Re: New victim

[Guest guest]

Welcome to the group!

I only have one partial answer to your questions. If you are

referring to Ivermectin use for heartworm like we do for dogs, one

important note is that at least for dogs, the level sufficient to

guard against Heartworm (using HeartGuard) is too low, I believe, to

be effective against mites. Or at least too infrequent (once/mo.).

Definitely check that out, if that is the program you were referring

to.

With luck, others on the group will have more useful answers to your

questions.

>

> Okay, I am reading a lot of stuff on this list as well as some other

> web pages.

> I am covered with bites. I have been getting bitten for about 2

weeks

> now, and i thought it was fleas. I worked extensively in my very

woody

> back yard yesterday and as a result i got a lot more bites.

> This morning I caught one... it had to be a mite, it was too small

to

> be anything else.

>

> *: can anyone point me to a scientific website that suggests that

> mites have an instar in the bloodstream? I see you guys talking

about

> it, but I have not found proof of this

>

> *: Cedar oil sounds great; but what will it do to my cats?

>

> *: I'm ready to go buy witch hazel, is it just soothing, or do the

> creatures hate them too?

> *: I just bought frontline for my cats, so that should help, i also

> give them ivermectin (program) but haven't started dosing them yet

> this season.

>

> *: has anyone used a hairdryer on the cracks and crevices of the

bed?

>

> *: does anyone know how hot our clothes dryers get?

>

>

> I've already been ironing my bed! but didn't realize what i was up

> against.

> I have never heard of this happening in the Pacific NW, does anyone

> have a map of where these infestations are occurring?

>

> HELP!

>

[Guest guest]

I had a similar poster request some info. I think these first links are some general info, but I can't remember. I don't have the time to go through them again.

http://www.uptodate.com/patients/content/topic.do?topicKey=tickflea/6591

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1559857

http://www2.ncid.cdc.gov/vector/TrainingManualPDFs/2.2%20Infections%20in%20Mosquito%20Cultures%20v%201.pdf

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1317186

http://web.birdbarrier.com/BirdBarrier/Site%20Pages/Diseases.htm

The following abstracts were originally provided by the Birdmites.org forum moderator, Tim.

TITLE: Acaroid mite, intestinal and urinary acariasisJOURNAL/DATE: World J Gastroenterol 2003;9(4):874-877AUTHOR(S): Chao-Pin Li, Yu-Bao Cui, Jian Wang, Qing-Gui Yang, Ye TianABSTRACT/SUMMARY: Various species of mites often infest stored foodstuffs and various drugs, and cause losses in food and drug products, especially in humid and warm area[1-9]. They are small creatures of about half a millimeter in body size and creamy white

in color, proving difficult to be detected from drugs and food products. Therefore, the incidence of various forms of human acariasis presumably caused by the ingestion of mite-infested food is unusually high in China[10]. In this study we investigates the epidemiological characteristics and pathogenic mite species of intestinal and urinary acariasis in individuals with different occupations in Anhui Province. Twenty-two species, from 9 families of mites were separated and identified.TEXT EXTRACT: "Acaroid mite can survive in many environments including the storehouse, human and animal bodies. Its infestion in human can cause acariasis in several organs including the lung, intestine and urinary tract[17-26]. Apparently the pathogenic mites come from environment. Regarding the transmission path, the following possibilities have been proposed. First, the insects may enter the urinary

tract by crawling from vulva. Second, they may enter the body through skin and reach urinary tract in some way. Third, mites in respiratory or alimentary system may enter the blood circulation, and reach kidney and urinary tract[46-50]. Acaroid in human urinary system may damage urethral epithelia, for the mites are good at digging. Furthermore, they can also invade loose connective tissue and small blood vessel in urinary tract, and caused an ulcer."IMPLICATIONS: Significant research that demonstrates the viability of acaroid mites to thrive in humans. These ectoparasites (environmental mites) were not previously known to infest humans; but thorough medical diagnostic tests showed the survivability of mites inside humans. Acariasis should always be a consideration for a longstanding infestation from parasites that need blood to

survive

TITLE: Diarrhea and acaroid mites: a clinical study.JOURNAL/DATE: World J Gastroenterol. 2003 Jul;9(7):1621-4.AUTHOR(S): Li CP, Cui YB, Wang J, Yang QG, Tian Y. Department of Etiology and Immunology, School of Medicine, Anhui University of Science Technology, Huainan 232001, Anhui Province, China.ABSTRACT/SUMMARY: To explore the characteristics of diarrhea caused by acaroid mites. METHODS: Acaroid

mites in fresh stools of 241 patients with diarrhea were separated by flotation in saturated saline. Meanwhile, skin prick test, total IgE and mite-specific IgE were detected in all patients. RESULTS: The total positive rate of mites in stool samples of the patients was 17.01 % (41/241), the positive rates of mites in male and female patients were 15.86 % (23/145) and 18.75 % (18/96), respectively, without significant difference (P>0.05). The percentage of skin prick test as "+++", "++", "+", "+/-" and "-" was 9.13 % (22/241), 7.47 % (18/241), 5.81 % (14/241), 4.98 % (12/241) and 72.61 % (175/241), respectively. The serum levels of total IgE, mite-specific IgE in patients with and without mites in stool samples were (165.72+/-78.55) IU/ml, (132.44+/-26.80) IU/ml and (145.22+/-82.47) IU/ml, (67.35+/-45.28) IU/ml, respectively, with significant difference (P<0.01). The positive rate of mites in stool samples in staffs working in traditional Chinese

medicine storehouses or rice storehouses (experimental group) was 26.74 % (23/86), which was significantly higher than that (11.61 %, 18/155) in people engaged in other professions (chi(2)=8.97, P<0.01). CONCLUSION: Acaroid mites cause diarrhea and increase serum levels of total IgE and mite-specific IgE of patients, and the prevalence of diarrhea caused by acaroid mites is associated with occupations rather than the gender of patients.IMPLICATIONS: Further research documenting human acariasis from mites previously classified as 'ectoparasites' in the textbooks. It is important for clinical researchers to 'think outside the box' when it comes to the variability of mites in order to survive in a changing environment. People with acariasis will often show increased levels of mite-specific IgE and this can be used by the physician to verify the person's claim of parasitosis and

acariasis. (Other tests can include IgG levels for parasites.)

These are posts within the birdmite forum in which you may also find informative.

bird mites/message/2702

bird mites/message/2487

bird mites/message/1724

bird mites/message/585

bird mites/message/37

new victim

Okay, I am reading a lot of stuff on this list as well as some otherweb pages.I am covered with bites. I have been getting bitten for about 2 weeksnow, and i thought it was fleas. I worked extensively in my very woodyback yard yesterday and as a result i got a lot more bites.This morning I caught one... it had to be a mite, it was too small tobe anything else.*: can anyone point me to a scientific website that suggests thatmites have an instar in the bloodstream? I see you guys talking aboutit, but I have not found proof of this*: Cedar oil sounds great; but what will it do to my cats?*: I'm ready to go buy witch hazel, is it just soothing, or do thecreatures hate them too?*: I just bought frontline for my cats, so that should help, i alsogive them ivermectin (program) but haven't started dosing them yetthis season.*: has anyone used a hairdryer on the cracks and crevices

of the bed?*: does anyone know how hot our clothes dryers get?I've already been ironing my bed! but didn't realize what i was upagainst.I have never heard of this happening in the Pacific NW, does anyonehave a map of where these infestations are occurring?HELP!

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

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[Guest guest]

GREAT info Frito. Thanks.

>

> I had a similar poster request some info.  I think these first links

are some general info, but I can't remember.  I don't have the time to

go through them again.

[Guest guest]

You are always very welcome.

Re: new victim

GREAT info Frito. Thanks.>> I had a similar poster request some info. I think these first links are some general info, but I can't remember. I don't have the time to go through them again.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Thanks so much

-- In bird mites , fritolay66 <fritolay66@...> wrote:

>

> I had a similar poster request some info.� I think these first links

are some general info, but I can't remember.� I don't have the time to

go through them again.

> http://www.uptodate.com/patients/content/topic.do?topicKey=tickflea/6591

> http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1559857

>

http://www2.ncid.cdc.gov/vector/TrainingManualPDFs/2.2%20Infections%20in%20Mosqu\

ito%20Cultures%20v%201.pdf

> http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1317186

> http://web.birdbarrier.com/BirdBarrier/Site%20Pages/Diseases.htm

> The following abstracts were originally provided by the

Birdmites.org forum moderator, Tim.

> TITLE: Acaroid mite, intestinal and urinary acariasisJOURNAL/DATE:

World J Gastroenterol 2003;9(4):874-877AUTHOR(S): Chao-Pin Li, Yu-Bao

Cui, Jian Wang, Qing-Gui Yang, Ye TianABSTRACT/SUMMARY: Various

species of mites often infest stored foodstuffs and various drugs, and

cause losses in food and drug products, especially in humid and warm

area[1-9]. They are small creatures of about half a millimeter in body

size and creamy white in color, proving difficult to be detected from

drugs and food products. Therefore, the incidence of various forms of

human acariasis presumably caused by the ingestion of mite-infested

food is unusually high in China[10]. In this study we investigates the

epidemiological characteristics and pathogenic mite species of

intestinal and urinary acariasis in individuals with different

occupations in Anhui Province. Twenty-two species, from 9 families of

mites were separated and identified.TEXT EXTRACT: " Acaroid mite can

survive in

> many environments including the storehouse, human and animal

bodies. Its infestion in human can cause acariasis in several organs

including the lung, intestine and urinary tract[17-26]. Apparently the

pathogenic mites come from environment. Regarding the transmission

path, the following possibilities have been proposed. First, the

insects may enter the urinary tract by crawling from vulva. Second,

they may enter the body through skin and reach urinary tract in some

way. Third, mites in respiratory or alimentary system may enter the

blood circulation, and reach kidney and urinary tract[46-50]. Acaroid

in human urinary system may damage urethral epithelia, for the mites

are good at digging. Furthermore, they can also invade loose

connective tissue and small blood vessel in urinary tract, and caused

an ulcer. " IMPLICATIONS: Significant research that demonstrates the

viability of acaroid mites to thrive in humans. These ectoparasites

(environmental mites)

> were not previously known to infest humans; but thorough medical

diagnostic tests showed the survivability of mites inside humans.

Acariasis should always be a consideration for a longstanding

infestation from parasites that need blood to survive

> TITLE: Diarrhea and acaroid mites: a clinical study.JOURNAL/DATE:

World J Gastroenterol. 2003 Jul;9(7):1621-4.AUTHOR(S): Li CP, Cui YB,

Wang J, Yang QG, Tian Y. Department of Etiology and Immunology, School

of Medicine, Anhui University of Science Technology, Huainan 232001,

Anhui Province, China.ABSTRACT/SUMMARY: To explore the characteristics

of diarrhea caused by acaroid mites. METHODS: Acaroid mites in fresh

stools of 241 patients with diarrhea were separated by flotation in

saturated saline.. Meanwhile, skin prick test, total IgE and

mite-specific IgE were detected in all patients. RESULTS: The total

positive rate of mites in stool samples of the patients was 17.01 %

(41/241), the positive rates of mites in male and female patients were

15.86 % (23/145) and 18.75 % (18/96), respectively, without

significant difference (P>0.05). The percentage of skin prick test as

" +++ " , " ++ " , " + " , " +/- " and " - " was 9.13 % (22/241), 7.47 % (18/241),

5.81 % (14/241),

> 4.98 % (12/241) and 72.61 % (175/241), respectively. The serum

levels of total IgE, mite-specific IgE in patients with and without

mites in stool samples were (165.72+/-78.55) IU/ml, (132.44+/-26.80)

IU/ml and (145.22+/-82.47) IU/ml, (67.35+/-45.28) IU/ml, respectively,

with significant difference (P<0.01). The positive rate of mites in

stool samples in staffs working in traditional Chinese medicine

storehouses or rice storehouses (experimental group) was 26.74 %

(23/86), which was significantly higher than that (11.61 %, 18/155) in

people engaged in other professions (chi(2)=8.97, P<0.01). CONCLUSION:

Acaroid mites cause diarrhea and increase serum levels of total IgE

and mite-specific IgE of patients, and the prevalence of diarrhea

caused by acaroid mites is associated with occupations rather than the

gender of patients.IMPLICATIONS: Further research documenting human

acariasis from mites previously classified as 'ectoparasites' in the

textbooks. It

> is important for clinical researchers to 'think outside the box'

when it comes to the variability of mites in order to survive in a

changing environment. People with acariasis will often show increased

levels of mite-specific IgE and this can be used by the physician to

verify the person's claim of parasitosis and acariasis. (Other tests

can include IgG levels for parasites.)

> These are posts within the birdmite forum in which you may also find

informative.

> bird mites/message/2702

> bird mites/message/2487

>

>

>

> new victim

>

>

> Okay, I am reading a lot of stuff on this list as well as some other

> web pages.

> I am covered with bites. I have been getting bitten for about 2 weeks

> now, and i thought it was fleas. I worked extensively in my very woody

> back yard yesterday and as a result i got a lot more bites.

> This morning I caught one... it had to be a mite, it was too small to

> be anything else.

>

> *: can anyone point me to a scientific website that suggests that

> mites have an instar in the bloodstream? I see you guys talking about

> it, but I have not found proof of this

>

> *: Cedar oil sounds great; but what will it do to my cats?

>

> *: I'm ready to go buy witch hazel, is it just soothing, or do the

> creatures hate them too?

> *: I just bought frontline for my cats, so that should help, i also

> give them ivermectin (program) but haven't started dosing them yet

> this season.

>

> *: has anyone used a hairdryer on the cracks and crevices of the bed?

>

> *: does anyone know how hot our clothes dryers get?

>

> I've already been ironing my bed! but didn't realize what i was up

> against.

> I have never heard of this happening in the Pacific NW, does anyone

> have a map of where these infestations are occurring?

>

> HELP!

>

>

> bird mites/message/1724

> bird mites/message/585

> bird mites/message/37

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Your welcome. Hope everyone finds it helpful.

Re: new victim

Thanks so much-- In bird mites, fritolay66 <fritolay66@ ...> wrote:>> I had a similar poster request some info.� I think these first linksare some general info, but I can't remember.� I don't have the time togo through them again.>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I really doubt mites have an instar phase in the bloodstream. That

kind of environment is not that hospitable for them and they tend to

be free living. They can occupy inside your ears, nose, lungs, and

any hole open to the outside though. From my experience they don't

live there but just hide until it is ok to come out ie. night or when

you are inactive. Here is my advice to you:

1. Isolate as much stuff as you can. Anything that is ok or you

don't want to clean, pack up in plastic air tight and throw it down in

the basement. The recommended time is 18 months for something to die

but you can probably take it out earlier when you are free of them in

the environment and treat them independently.

2. Try to limit the areas they can spread to. If you work in a cube

and drive a car, they are going to get in there easily. Therefore you

should have a good cleaning routine before you go in either. This

includes any uninfected areas. Otherwise they'll start hanging out

there and wait until you come back. The worst thing you can do is

move because you'll just start up another problem area.

3. Frontline is good against the mites that will bite. It only kills

the ones that have contact with the skin for a prolonged period of

time. It is made for ticks which only live on the host so it is only

partially good for them since these mites only spend part of their

lives on the host. I would advice against using ivermectin and

frontline on your cats. Both are very hard on mammals and cats are

extra sensitive to poisons. I would choose one and then do lime and

sulfur dips regularly.

4. Find the original host and get rid of the fucker and it's habitat.

Make sure you clean that out thoroughly. They had to get there some

how. These mites do not live off of trees and leaves.

5. Figure out a good cleaning routine and stick to it. Their biggest

strength is their numbers. Sulfur is best because it isn't harmful to

you but it is to them. Use ANYTHING with it such as Epsom salt, msm

(you can get this at Trader Joe's), etc. If you can get it in a pure

form just add it to anything you use. Try to make their in

environment inhospitable to them.

6. Store stuff that is routinely being treated in plastic. They

cannot crawl on it. Vaseline is good too.

7. One personal tip is go spitball crazy with the cleaning and be

extra paranoid. It is better to over do it than under do it.

8. They won't die alone with just washing your clothes and putting

them in the dryer. Wash your clothes in borax, ammonia, and bleach

for whites. Keep the cleaned clothes separate. I bought white sheets

at ross that I could bleach the hell out of that I change ever night.

This website had some good tips too:

http://209.85.173.104/search?q=cache:qL3ELMhfWpQJ:www.badspiderbites.com/scabies\

/+sauna+kills+mites & hl=en & ct=clnk & cd=1 & gl=us

>

> Okay, I am reading a lot of stuff on this list as well as some other

> web pages.

> I am covered with bites. I have been getting bitten for about 2 weeks

> now, and i thought it was fleas. I worked extensively in my very woody

> back yard yesterday and as a result i got a lot more bites.

> This morning I caught one... it had to be a mite, it was too small to

> be anything else.

>

> *: can anyone point me to a scientific website that suggests that

> mites have an instar in the bloodstream? I see you guys talking about

> it, but I have not found proof of this

>

> *: Cedar oil sounds great; but what will it do to my cats?

>

> *: I'm ready to go buy witch hazel, is it just soothing, or do the

> creatures hate them too?

> *: I just bought frontline for my cats, so that should help, i also

> give them ivermectin (program) but haven't started dosing them yet

> this season.

>

> *: has anyone used a hairdryer on the cracks and crevices of the bed?

>

> *: does anyone know how hot our clothes dryers get?

>

>

> I've already been ironing my bed! but didn't realize what i was up

> against.

> I have never heard of this happening in the Pacific NW, does anyone

> have a map of where these infestations are occurring?

>

> HELP!

>

[Guest guest]

Welcome Malerie,

I suffered from fatigue for a good year before I was diagnosed (the doctors do not think it had anything to do with having a cholesteatoma - but I disagree) - because my equalibrium was so messed up driving was a huge chore trying to focus my eyes on the road with your head swimming makes you exhausted - I can relate - I have been there. It will get better once you have surgery.

From: malerieace <malerieace@...>cholesteatoma Sent: Tue, November 3, 2009 8:00:45 AMSubject: New victim

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling. After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and constantly

fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told a cousin of

mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My husband said see! I

told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to my eyes will become

unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Can I ask who you are seeing in Cincinnati, OH? That is where I live. I saw two surgeons and Dr. Lesinski did my surgery.

From: malerieace <malerieace@...>Subject: New victimcholesteatoma Date: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling.. After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and constantly

fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told a cousin of

mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My husband said see! I

told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to my eyes will become

unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Hello , the doctors name is Dr. Persak. The people at the ent office feel that they will do this operation within 2 weeks a month at mostThe audiologist also felt like I would probably get the majority of my hearing back in my right ear after surgery. She was very encouraging and I am now looking forward to living a normal life let me know if you know anything about Dr. Persak. Thanks Malerie

From: Sefton <seftonmichelle@...>cholesteatoma Sent: Wed, November 4, 2009 5:08:28 AMSubject: Re: New victim

Can I ask who you are seeing in Cincinnati, OH? That is where I live. I saw two surgeons and Dr. Lesinski did my surgery.

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling.. After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Sorry about that Dr Pensak I did not read the report right the office was nice enough to give me a copy of the ct report so I could at least have an idea of what was going on . And the audiologist showed e the areas the report talked about. After being sloughed of like so uch bad skin for so any years I found this to be very comforting and I am very impressed that she took the time to help me. If you ever need the name of a good office I will tell you Dr. Conrad has treated me very very good he is in Maysville Kentucky. Anyway Dr Pensak is who I will be seeing and if he is anywhere near as good as Dr. Conrad has been I will count myself as doubley blessed. Hope you are doing well and get your rest. Sincerely Malerie

From: Malerie Ace <malerieace@...>cholesteatoma Sent: Thu, November 5, 2009 2:07:07 PMSubject: Re: New victim

Hello , the doctors name is Dr. Persak. The people at the ent office feel that they will do this operation within 2 weeks a month at mostThe audiologist also felt like I would probably get the majority of my hearing back in my right ear after surgery. She was very encouraging and I am now looking forward to living a normal life let me know if you know anything about Dr. Persak. Thanks Malerie

From: Sefton <seftonmichelle>cholesteatomaSent: Wed, November 4, 2009 5:08:28 AMSubject: Re: New victim

Can I ask who you are seeing in Cincinnati, OH? That is where I live. I saw two surgeons and Dr. Lesinski did my surgery.

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling.. After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Malerie,

I did go see Dr. Pensak but he did not do my surgery. I've heard very good things about him, but be prepared- he is very blunt and not at all compassionate. I left his office in tears. I chose to get a second opinion and ended up going to a different doctor. I have heard he is an excellent surgeon. Hopefully you will have a better experience with him- or maybe you already saw him? Tell me what you thought.

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Hello , I am so sorry he was so short with you and I appreciate the insight at least I will know how he is before I go in there. But I will tell you I can be pretty harsh to these doctors myself. I have never felt as low as I did at 17 with that last ent who told me there was nothing wrong with me and after the audiologist told me as well as my current ent that I have probably had this thing for 15 years or more I decided right then and there if anyone wants to push me off again I will fill them in on what they can do with there degrees. We know how we feel they can only conjecture. By the way I am thirty now and I had this thing when I saw that ent when I was 17. But believe me I will fill you in on how it goes at least this guy has hard evidence that I am not making it up and as

long as he has steady hands and does not render me brainless in my prime the rest will go fine. Thanks again for the info and keep in touch with how you are doing I am very interested to know. Malerie

From: Sefton <seftonmichelle@...>cholesteatoma Sent: Fri, November 6, 2009 5:13:42 AMSubject: Re: New victim

Malerie,

I did go see Dr. Pensak but he did not do my surgery. I've heard very good things about him, but be prepared- he is very blunt and not at all compassionate. I left his office in tears. I chose to get a second opinion and ended up going to a different doctor. I have heard he is an excellent surgeon. Hopefully you will have a better experience with him- or maybe you already saw him? Tell me what you thought.

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Malerie-

When do you go see Dr. Pensak? I'm anxious to hear what you thought.

Take care!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

I have no idea yet they are kind of dragging their heels. I guess it's just the time of year, slows us all down. I called thurs. morning and Patti said they would let me know by thurs evening or friday morning but ain't heard nothing as of yet. Believe me you guys are the only ones in the world that could possiably understand how anxious I am to get seen. But I will keep you up to date, it has been so nice to have somebody else understand how it feels although I would not wish this on anyone it is still a comfort to have you guys. Thanks for keeping up with me though I really needed that warm fuzzy today. Hope everything is going well on your end of the pc! Malerie

From: Sefton <seftonmichelle@...>cholesteatoma Sent: Fri, November 13, 2009 5:49:58 AMSubject: Re: New victim

Malerie-

When do you go see Dr. Pensak? I'm anxious to hear what you thought.

Take care!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill.. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Malerie,

My husband has had several surgeries on his ears. He is 44 years old and like you, had many problems with his ears at an early age. His bones in his ears had also been eroded. He has had one ctoma on one ear and two on the other. His last surgery was in Sept. and he still can't hear well. I honestly believe he will need hearing aids soon. I hope things go well for you. My husband has had vertigo since his surgery, extremely painful headaches, and depression. Matter-of-fact, I made him go to his family doctor yesterday because of his depression. They put him on medicine to help with it. I think he is depressed because he can't hear well and just doesn't feel good.

From: Malerie Ace <malerieace@...>cholesteatoma Sent: Fri, November 13, 2009 6:23:05 PMSubject: Re: New victim

I have no idea yet they are kind of dragging their heels. I guess it's just the time of year, slows us all down. I called thurs. morning and Patti said they would let me know by thurs evening or friday morning but ain't heard nothing as of yet. Believe me you guys are the only ones in the world that could possiably understand how anxious I am to get seen. But I will keep you up to date, it has been so nice to have somebody else understand how it feels although I would not wish this on anyone it is still a comfort to have you guys. Thanks for keeping up with me though I really needed that warm fuzzy today. Hope everything is going well on your end of the pc! Malerie

From: Sefton <seftonmichelle>cholesteatomaSent: Fri, November 13, 2009 5:49:58 AMSubject: Re: New victim

Malerie-

When do you go see Dr. Pensak? I'm anxious to hear what you thought.

Take care!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill.. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Hang in there, Malerie- I know exactly how you feel!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill.. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Thank you I needed that. :0) Keep in touch. Mal

From: Sefton <seftonmichelle@...>cholesteatoma Sent: Sat, November 14, 2009 4:53:12 PMSubject: Re: New victim

Hang in there, Malerie- I know exactly how you feel!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill.. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Thanks for sharing with me Christy. I can definantley understand his depression, it is hard to not feel good and make yourself get up everyday and do what you have to. You feel alone because it is something no one else can understand and because you aren't showing any physical symptoms no one would ever know you are feeling bad. Your husband is very lucky though he has you to support him and I can tell you are doing all you can to help him. The deprssion meds should help take the edge off for him(they did for me). I am so sorry he has to go through this and you with him I don't believe I would wish it on anyone. Thanks again ,take care and please keep in touch and let me know if the meds helped him at all. Malerie

From: Christy Dozier <savemoredo@...>cholesteatoma Sent: Sat, November 14, 2009 10:42:52 AMSubject: Re: New victim

Malerie,

My husband has had several surgeries on his ears. He is 44 years old and like you, had many problems with his ears at an early age. His bones in his ears had also been eroded. He has had one ctoma on one ear and two on the other. His last surgery was in Sept. and he still can't hear well. I honestly believe he will need hearing aids soon. I hope things go well for you. My husband has had vertigo since his surgery, extremely painful headaches, and depression.. Matter-of-fact, I made him go to his family doctor yesterday because of his depression. They put him on medicine to help with it. I think he is depressed because he can't hear well and just doesn't feel good.

From: Malerie Ace <malerieace (DOT) com>cholesteatomaSent: Fri, November 13, 2009 6:23:05 PMSubject: Re: New victim

I have no idea yet they are kind of dragging their heels. I guess it's just the time of year, slows us all down. I called thurs. morning and Patti said they would let me know by thurs evening or friday morning but ain't heard nothing as of yet. Believe me you guys are the only ones in the world that could possiably understand how anxious I am to get seen. But I will keep you up to date, it has been so nice to have somebody else understand how it feels although I would not wish this on anyone it is still a comfort to have you guys. Thanks for keeping up with me though I really needed that warm fuzzy today. Hope everything is going well on your end of the pc! Malerie

From: Sefton <seftonmichelle>cholesteatomaSent: Fri, November 13, 2009 5:49:58 AMSubject: Re: New victim

Malerie-

When do you go see Dr. Pensak? I'm anxious to hear what you thought.

Take care!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill.. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Hello , I got my call today at about 2:00 Surgery is saturday at 10:30 am at UC I guess there is no reason to see Dr Pensak before the surgery so I won't be able to tell you what I think until after surgery. Why am I a little scared? It just all seems a little fast, do you think maybe it is because I am unknown to himand he just wants to get it over with? That's what I am going to think, the CT scan sounded positive so I am going to stick with positive thoughts. I don't know I am just rambling. I am really worried how I will feel afterwards, how long does this thing knock you down. I have got kids, and a job, and going to school. oh well I can make it through, it couldn't be worse than the headaches life throws at us could it? Take care and keep in touch. Malerie

From: Sefton <seftonmichelle@...>cholesteatoma Sent: Fri, November 13, 2009 5:49:58 AMSubject: Re: New victim

Malerie-

When do you go see Dr. Pensak? I'm anxious to hear what you thought.

Take care!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Malerie,

Why can't you see Dr. Pensak before surgery? I think I would want to meet him and at least get any questions I had answered. If you do have questions or concerns I would at least call the office and get them answered.

I know how you feel. I am 41 years old with three kids, ages 14, 11, and 8. I never had any problems with my ear until about 4 years ago it became "plugged up". I kept going to my family doctor and he kept telling me nothing was wrong. Finally, he referred me to an ENT who told me I had otosclerosis and to come back in a year for another hearing test. To make a long story short, I got a second opinion and he did a CT scan and found the C-toma. So to go from nothing is wrong to suddenly you have something in your ear that requires surgery is quite dishearteneing. I had some time between diagnosis and my actual surgery which in my opinion is almost worse. The less time you have the less time you worry and really the worrying is the hardest part. I had my CT scan in Dec. and surgery wasn't until Aug. I wish I wouldn't have waited so long- I may have had better results in the end.

But as far as the surgery itself. Going in my doctor thought he was going to do Canal Wall Up, but once he got in there it was worse than the scan showed. He said it was about the size of my thumb, ate away 1-/2 of my hearing bones and part of the third. It also at away about 8mm of the bone between the ear and brain, exposing part of the Dura of the brain, and he had to peal it off the facial nerve. He ended up doing Canal Wall Down. I am not telling you all of this to scare you. My point is, I had all of this done, outpatient, and it wasn't as bad as I thought. Now I had a slight complication with the prothesis- he thinks he pulled something too tight and caused an inner ear fluid leak because I did have sever dizziness for about a week after surgery. I wasn't able to drive for 2 weeks. It was supposed to be 3 days but mine was a bit longer because of the dizziness. So even the worst case

senario, I was down for about two weeks, which I believe is on the long side.

I also tired out easily for about 2-3 weeks and I believe that is the anesthesia. Everything I worried about I shouldn't have. The anethesia went well, I didn't even know I had a breathing tube, it wasn't painful. I had pain right after surgery and they gave me percoset. It made me deathly ill so I didn't take any more. I took extra strength Tylenol for about a week if that. I was also on prednisone for the problem with the inner ear fluid leak.

And now, 3 months after surgery I am doing great. I went on my first plane trip since surgery and didn't have any pain! I do still have ringing in that ear which I don't think will ever go away. I also have about a 15% hearing loss in that ear which I don't think is that bad. But my ear still feels "plugged up" which I was hoping that feeling would go away. I guess that is just the hearing loss. Also, the area around my ear on my head feels weird. Not exactly numb but kind of. The incision looks great- I didn't have any outter stitches- just a steri strip that they removed after 2 weeks. I do have a taste disturbance, which is getting better. Right after surgery everything tasted (or I should say didn't taste!) like cardboard. And the right side of my tongue is still slightly numb- but it keeps getting better.

I'm probably telling you too much, but it helped me to hear from people who had been through this. I too, was worried about how I would manage with 3 kids after surgery. My husband took off three days and my mom came and stayed with us for a week. Let people help you if you have that opportunity. Concentrate on healing and drink, drink, drink lots of fluids after surgery to flush all that anesthesia out of your system. Also get up and walk around as much as possible!!!

If you have any questions feel free to ask. I will be thinking about you and when you are feeling better let us all know how surgery went.

Best of luck!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

Hey ,

I found out today after calling and getting no call backs that tomarrow is just a visit. Thank goodness! I was a little bit leary of doing surgery that fast so this works out better. I am so glad for the information you gave me I know everybody is differant but you hav alieved a lot of the worries I had. I am so sorry they made you wait so long and then to have all that trouble afterwards and I am kind of worried what they will find once they get in there. Last year my tongue did go numb on the right side and it still is but I just adjusted to it so I don't even notice it anymore. The only thing it really affects is Ice cream (it makes it taste metallic) but that's okay because I am already about 100 pounds over weight so any help in that dept. is okay.LOL! I was just really worried about feeling worse than I do now and that is not very good most of the time. But I have adopted the attitude that it will all be worth it in

the end. Thank you for all the encouragement I really do appreciate it you don't know how much. My mother n law said she would probably come and stay when I had it done and I won't be able to hear her so I deffinantly won't mind LOL. Your right it does help to hear about others that have this problem because it is like any other disease unless you have it you can't understand it. And it does help me for you to tell me all that you went through because I am the type of person who likes to know all the angles. So I will write tomarrow and tell you what happened. Thanks for being there and talking to me it means the world to me.

From: Sefton <seftonmichelle@...>cholesteatoma Sent: Fri, November 20, 2009 4:43:01 AMSubject: Re: New victim

Malerie,

Why can't you see Dr. Pensak before surgery? I think I would want to meet him and at least get any questions I had answered. If you do have questions or concerns I would at least call the office and get them answered.

I know how you feel. I am 41 years old with three kids, ages 14, 11, and 8. I never had any problems with my ear until about 4 years ago it became "plugged up". I kept going to my family doctor and he kept telling me nothing was wrong. Finally, he referred me to an ENT who told me I had otosclerosis and to come back in a year for another hearing test. To make a long story short, I got a second opinion and he did a CT scan and found the C-toma. So to go from nothing is wrong to suddenly you have something in your ear that requires surgery is quite dishearteneing. I had some time between diagnosis and my actual surgery which in my opinion is almost worse. The less time you have the less time you worry and really the worrying is the hardest part. I had my CT scan in Dec. and surgery wasn't until Aug. I wish I wouldn't have waited so long- I may have had better results in the end.

But as far as the surgery itself. Going in my doctor thought he was going to do Canal Wall Up, but once he got in there it was worse than the scan showed. He said it was about the size of my thumb, ate away 1-/2 of my hearing bones and part of the third. It also at away about 8mm of the bone between the ear and brain, exposing part of the Dura of the brain, and he had to peal it off the facial nerve. He ended up doing Canal Wall Down. I am not telling you all of this to scare you. My point is, I had all of this done, outpatient, and it wasn't as bad as I thought. Now I had a slight complication with the prothesis- he thinks he pulled something too tight and caused an inner ear fluid leak because I did have sever dizziness for about a week after surgery. I wasn't able to drive for 2 weeks. It was supposed to be 3 days but mine was a bit longer because of the dizziness. So even the worst case

senario, I was down for about two weeks, which I believe is on the long side.

I also tired out easily for about 2-3 weeks and I believe that is the anesthesia. Everything I worried about I shouldn't have. The anethesia went well, I didn't even know I had a breathing tube, it wasn't painful. I had pain right after surgery and they gave me percoset. It made me deathly ill so I didn't take any more. I took extra strength Tylenol for about a week if that. I was also on prednisone for the problem with the inner ear fluid leak.

And now, 3 months after surgery I am doing great. I went on my first plane trip since surgery and didn't have any pain! I do still have ringing in that ear which I don't think will ever go away. I also have about a 15% hearing loss in that ear which I don't think is that bad. But my ear still feels "plugged up" which I was hoping that feeling would go away. I guess that is just the hearing loss. Also, the area around my ear on my head feels weird. Not exactly numb but kind of. The incision looks great- I didn't have any outter stitches- just a steri strip that they removed after 2 weeks. I do have a taste disturbance, which is getting better. Right after surgery everything tasted (or I should say didn't taste!) like cardboard. And the right side of my tongue is still slightly numb- but it keeps getting better.

I'm probably telling you too much, but it helped me to hear from people who had been through this. I too, was worried about how I would manage with 3 kids after surgery. My husband took off three days and my mom came and stayed with us for a week. Let people help you if you have that opportunity. Concentrate on healing and drink, drink, drink lots of fluids after surgery to flush all that anesthesia out of your system. Also get up and walk around as much as possible!!!

If you have any questions feel free to ask. I will be thinking about you and when you are feeling better let us all know how surgery went.

Best of luck!

From: malerieace <malerieace (DOT) com>Subject: New victimcholesteatomaDate: Tuesday, November 3, 2009, 2:00 PM

Hello my name is Malerie and I am really glad to know I am not alone out there. My storey starts early on I had multiple ear infections as a small child one of my earliest memories is waking up in the hospital from tubes being put in. It was a big deal in 1981. After having tubes 3 times I still had reocurring ear infections and sinusitis all through my childhood and teenage years. During my senior year in high school(1996- 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my sickbed to my bathroom. I had to crawl which I can tell you was not just a little bit humbling... After being told several times by the doctor I had blisters on my eardrums my mother finally got fed up and scheduled me with an ent. I went to this doctor and he told me there was nothing wrong with me and to stop taking all the antibiotics. I cried all the way home I was trully sick and no one believed me. So I sucked it up and went back to school and

constantly fought back sick waves of dizziness. I lived that way through metting my husband, having my first and second child and working. Until July of 2005 when we went swimming in the local communityh lake and I came up with an ear infection that layed me low. I was so sick my throat started closing up and everything. After my round with really good antibiotics my Right ear was never the same it would itch and ache I would clean it with a q-tip and the q-tip would be nothign but solid reddish brown afterwards. I finally went to a night clinic and that is were I recieved my first diagnosis of c-toma in the right ear. I was very scared, I had no insurance and a very poor paying job two children to support and my husband didn't have a very good paying job either and no insurance. But I trucked on to the ent anyway and he was a real jerk. He kept pushing surgery without any thought to how I could even pay for it so I gave up, and did not go back. I told

a cousin of mine about my situation and she worked for the radiology department of a hospital and she set my up with the head and neck surgon at her hospital. He was very kind and patient. He informed me of all I needed to know about this condition and had a ct ran of my mastoids. When I went back to see him he told me the c-toma was gone! I was overjoyed! But as the years went on, I got a better job one with insurance,but the pain in my right ear never got any better I went through the tough antibiotic drops and z-packs but nothing ever helped for long stretches. Also my left ear was starting to fail me.. Finally one day this Oct. I was sitting outside in the garage with my husband on my left and the family beagle on my right. My husband said "Boy that dog is snoring to beat all!" I said what are you talking about I can't hear him snoring. I had to turn and listen intently with my left ear to even hear him and he was sitting right next to me! My

husband said see! I told you you couldn't hear it thunder! I was very upset.I kinew my hearing was bad but I did not realize it had gotten this bad! So I made my appointment with the doc and she felt it was time for me to go on to the ent since I never saw her when my ears felt normal. The ent who is great by the way looked at my right ear with his high-powered microscope and told me the c-toma had eroded some of my bone! I thought it was gone and now they are telling me it has eaten away at my bones! So that was last tuesday in which he also told me there was a tiny hole in my left ear and sent me for a ct scan on thursday. This week I am scheduled for my audiology on thursday and I have no idea what to expect. I would also like to know if anyone else has experienced extreme fatigue with this thing? Since my senior year, I can not get enough sleep. I have been treated for depression but I still want to sleep all the time. Sometimes I physically have to

my eyes will become unfocused and my head will just swim I will also get extremely nausous. Is this part of this condition ? The doctor told me the c-toma was probably from all the tubes I had had but wouldn't have shown up sooner if so? I just have no idea what to expect I know they want to do surgery and that guy is in cincinati OH 2 hours away from me. But other than that I am just floating in a sea of unknowing. Let me know if anyone has any info.

[Guest guest]

OK, the MIL thing really cracked me up! I love mine, but she has said

some weird stuff through Chloe's (my 6 year old) crazy time with

ctoma! Sometimes I feel like she is saying it is somehow my fault that

hers keeps coming back. Hers was congenital and complicated...Anyway,

it reminded me of when Chloe had her hearing aid and used to turn it

off when things got " boring... "

Best on your visit today!

On 11/20/09, Malerie Ace <malerieace@...> wrote:

> Hey ,

>     I found out today after calling and getting no call backs that tomarrow

> is just a visit. Thank goodness! I was a little bit leary of doing surgery

> that fast so this works out better. I am so glad for the information you

> gave me I know everybody is differant but you hav alieved a lot of the

> worries I had. I am so sorry they made you wait so long and then to have all

> that trouble afterwards and I am kind of worried what they will find once

> they get in there. Last year my tongue did go numb on the right side and it

> still is but I just adjusted to it so I don't even notice it anymore. The

> only thing it really affects is Ice cream (it makes it taste metallic) but

> that's okay because I am already about 100 pounds over weight so any help in

> that dept. is okay.LOL!  I was just really worried about feeling worse than

> I do now and that is not very good most of the time. But I have adopted the

> attitude that it will all be worth it in the end. Thank you for

> all the encouragement I really do appreciate it you don't know how much. My

> mother n law said she would probably come and stay when I had it done and I

> won't be able to hear her so I deffinantly won't mind LOL. Your right it

> does help to hear about others that have this problem because it is like any

> other disease unless you have it you can't understand it. And it does help

> me for you to tell me all that you went through because I am the type of

> person who likes to know all the angles. So I will write tomarrow and tell

> you what happened. Thanks for being there and talking to me it means the

> world to me.

>

>

>

>

> ________________________________

> From: Sefton <seftonmichelle@...>

> cholesteatoma

> Sent: Fri, November 20, 2009 4:43:01 AM

> Subject: Re: New victim

>

>

> Malerie,

>

> Why can't you see Dr. Pensak before surgery?  I think I would want to meet

> him and at least get any questions I had answered.  If you do have questions

> or concerns I would at least call the office and get them answered.

>

> I know how you feel.  I am 41 years old with three kids, ages 14, 11, and

> 8.  I never had any problems with my ear until about 4 years ago it became

> " plugged up " .  I kept going to my family doctor and he kept telling me

> nothing was wrong.  Finally, he referred me to an ENT who told me I had

> otosclerosis and to come back in a year for another hearing test.  To make a

> long story short, I got a second opinion and he did a CT scan and found the

> C-toma.  So to go from nothing is wrong to suddenly you have something in

> your ear that requires surgery is quite dishearteneing.  I had some time

> between diagnosis and my actual surgery which in my opinion is almost

> worse.  The less time you have the less time you worry and really the

> worrying is the hardest part.  I had my CT scan in Dec. and surgery wasn't

> until Aug.  I wish I wouldn't have waited so long- I may have had better

> results in the end.

>

> But as far as the surgery itself.  Going in my doctor thought he was going

> to do Canal Wall Up, but once he got in there it was worse than the scan

> showed.  He said it was about the size of my thumb, ate away 1-/2 of my

> hearing bones and part of the third.  It also at away about 8mm of the bone

> between the ear and brain, exposing part of the Dura of the brain, and he

> had to peal it off the facial nerve.  He ended up doing Canal Wall Down.  I

> am not telling you all of this to scare you.  My point is, I had all of this

> done, outpatient, and it wasn't as bad as I thought.  Now I had a slight

> complication with the prothesis- he thinks he pulled something too tight and

> caused an inner ear fluid leak because I did have sever dizziness for about

> a week after surgery.  I wasn't able to drive for 2 weeks.  It was supposed

> to be 3 days but mine was a bit longer because of the dizziness.  So even

> the worst case senario, I was down for about two weeks,

> which I believe is on the long side.

>

> I also tired out easily for about 2-3 weeks and I believe that is the

> anesthesia.  Everything I worried about I shouldn't have.  The anethesia

> went well, I didn't even know I had a breathing tube, it wasn't painful.  I

> had pain right after surgery and they gave me percoset.  It made me deathly

> ill so I didn't take any more.  I took extra strength Tylenol for about a

> week if that.  I was also on prednisone for the problem with the inner ear

> fluid leak.

>

> And now, 3 months after surgery I am doing great.  I went on my first plane

> trip since surgery and didn't have any pain!  I do still have ringing in

> that ear which I don't think will ever go away.  I also have about a 15%

> hearing loss in that ear which I don't think is that bad.  But my ear still

> feels " plugged up " which I was hoping that feeling would go away.  I guess

> that is just the hearing loss.  Also, the area around my ear on my head

> feels weird.  Not exactly numb but kind of.  The incision looks great- I

> didn't have any outter stitches- just a steri strip that they removed after

> 2 weeks.  I do have a taste disturbance, which is getting better.  Right

> after surgery everything tasted (or I should say didn't taste!) like

> cardboard.  And the right side of my tongue is still slightly numb- but it

> keeps getting better.

>

> I'm probably telling you too much, but it helped me to hear from people who

> had been through this.  I too, was worried about how I would manage with 3

> kids after surgery.  My husband took off three days and my mom came and

> stayed with us for a week.  Let people help you if you have that

> opportunity.  Concentrate on healing and drink, drink, drink lots of fluids

> after surgery to flush all that anesthesia out of your system.  Also get up

> and walk around as much as possible!!!

>

> If you have any questions feel free to ask.  I will be thinking about you

> and when you are feeling better let us all know how surgery went.

>

> Best of luck!

>

>

>

>>>

>>>

>>>>From: malerieace <malerieace (DOT) com>

>>>>Subject: New victim

>>>>cholesteatoma

>>>>Date: Tuesday, November 3, 2009, 2:00 PM

>>>>

>>>>

>>>>

>>>>Hello my name is Malerie and I am really glad to know I am not alone out

>>>> there. My storey starts early on I had multiple ear infections as a

>>>> small child one of my earliest memories is waking up in the hospital

>>>> from tubes being put in. It was a big deal in 1981. After having tubes 3

>>>> times I still had reocurring ear infections and sinusitis all through my

>>>> childhood and teenage years. During my senior year in high school(1996-

>>>> 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my

>>>> sickbed to my bathroom. I had to crawl which I can tell you was not just

>>>> a little bit humbling... After being told several times by the doctor I

>>>> had blisters on my eardrums my mother finally got fed up and scheduled

>>>> me with an ent. I went to this doctor and he told me there was nothing

>>>> wrong with me and to stop taking all the antibiotics. I cried all the

>>>> way home I was trully sick and no one believed me. So I sucked it up and

>>>> went back to school and constantly

> fought back sick waves of dizziness. I lived that way through metting my

> husband, having my first and second child and working. Until July of 2005

> when we went swimming in the local communityh lake and I came up with an ear

> infection that layed me low. I was so sick my throat started closing up and

> everything. After my round with really good antibiotics my Right ear was

> never the same it would itch and ache I would clean it with a q-tip and the

> q-tip would be nothign but solid reddish brown afterwards. I finally went to

> a night clinic and that is were I recieved my first diagnosis of c-toma in

> the right ear. I was very scared, I had no insurance and a very poor paying

> job two children to support and my husband didn't have a very good paying

> job either and no insurance. But I trucked on to the ent anyway and he was a

> real jerk. He kept pushing surgery without any thought to how I could even

> pay for it so I gave up, and did not go back. I told a cousin of

> mine about my situation and she worked for the radiology department of a

> hospital and she set my up with the head and neck surgon at her hospital. He

> was very kind and patient. He informed me of all I needed to know about this

> condition and had a ct ran of my mastoids. When I went back to see him he

> told me the c-toma was gone! I was overjoyed! But as the years went on, I

> got a better job one with insurance,but the pain in my right ear never got

> any better I went through the tough antibiotic drops and z-packs but nothing

> ever helped for long stretches. Also my left ear was starting to fail me..

> Finally one day this Oct. I was sitting outside in the garage with my

> husband on my left and the family beagle on my right. My husband said " Boy

> that dog is snoring to beat all! " I said what are you talking about I can't

> hear him snoring. I had to turn and listen intently with my left ear to even

> hear him and he was sitting right next to me! My husband said see!

> I told you you couldn't hear it thunder! I was very upset.I kinew my

> hearing was bad but I did not realize it had gotten this bad! So I made my

> appointment with the doc and she felt it was time for me to go on to the ent

> since I never saw her when my ears felt normal. The ent who is great by the

> way looked at my right ear with his high-powered microscope and told me the

> c-toma had eroded some of my bone! I thought it was gone and now they are

> telling me it has eaten away at my bones! So that was last tuesday in which

> he also told me there was a tiny hole in my left ear and sent me for a ct

> scan on thursday. This week I am scheduled for my audiology on thursday and

> I have no idea what to expect. I would also like to know if anyone else has

> experienced extreme fatigue with this thing? Since my senior year, I can not

> get enough sleep. I have been treated for depression but I still want to

> sleep all the time. Sometimes I physically have to my eyes will

> become unfocused and my head will just swim I will also get extremely

> nausous. Is this part of this condition ? The doctor told me the c-toma was

> probably from all the tubes I had had but wouldn't have shown up sooner if

> so? I just have no idea what to expect I know they want to do surgery and

> that guy is in cincinati OH 2 hours away from me. But other than that I am

> just floating in a sea of unknowing. Let me know if anyone has any info.

>>>>

>>>>

>>>

>>

>>

>

>

>

>

>

[Guest guest]

How is Chloe? I have been thinking about her and wondering how she was. Yeah you can love your MIL's but they can really say some stupid stuff! Mine tries to be helpful and I do love her but she is Bi-polar and really hard to deal with when she gets excited. And she can talk more than anyone alive so she drives me a little crazy. Bless your heart I am sorry she made you feel that way you know it isn't your fault sometimes it's just the cards your delt. My ENT told me that my ctoma had probably been growing since I had tubes as a kid and my mother took offense saying well we did all that could be done at the time. And I told her that it absolutely was not her fault it was just a malfunction of my body there is nothing anyone could have done to have prevented it. But I LOVE that she

turns down her hearing aid when things get "boring" LOL kids are wonderful aren't they, when I have difficulty hearing people my daughter will pipe up and say "My mommy doesn't hear beary well" and it just tickles the heck out me! Nothing passes them by, they catch everything. The visit went very well the dr was clear and concise he and was prepared to take all my questions, thankfully I have had you all to talk to so he didn't tell me a thing that I didn't already know just by reading these posts. Monday his surgery scheduler will call me and we will set the day. Keep in touch and I am glad you are out there. Malerie

From: s <thequeen.christine@...>cholesteatoma Sent: Fri, November 20, 2009 8:38:56 PMSubject: Re: New victim

OK, the MIL thing really cracked me up! I love mine, but she has saidsome weird stuff through Chloe's (my 6 year old) crazy time withctoma! Sometimes I feel like she is saying it is somehow my fault thathers keeps coming back. Hers was congenital and complicated. ..Anyway,it reminded me of when Chloe had her hearing aid and used to turn itoff when things got "boring..."Best on your visit today!On 11/20/09, Malerie Ace <malerieace (DOT) com> wrote:> Hey ,> I found out today after calling and getting no call backs that tomarrow> is just a visit. Thank goodness! I was a little bit leary of doing surgery> that fast so this works out better. I am so glad for the information you> gave me I know everybody is differant but you hav

alieved a lot of the> worries I had. I am so sorry they made you wait so long and then to have all> that trouble afterwards and I am kind of worried what they will find once> they get in there. Last year my tongue did go numb on the right side and it> still is but I just adjusted to it so I don't even notice it anymore. The> only thing it really affects is Ice cream (it makes it taste metallic) but> that's okay because I am already about 100 pounds over weight so any help in> that dept. is okay.LOL! I was just really worried about feeling worse than> I do now and that is not very good most of the time. But I have adopted the> attitude that it will all be worth it in the end. Thank you for> all the encouragement I really do appreciate it you don't know how much. My> mother n law said she would probably come and stay when I had it done and I> won't be able to hear

her so I deffinantly won't mind LOL. Your right it> does help to hear about others that have this problem because it is like any> other disease unless you have it you can't understand it. And it does help> me for you to tell me all that you went through because I am the type of> person who likes to know all the angles. So I will write tomarrow and tell> you what happened. Thanks for being there and talking to me it means the> world to me.>>>>> ____________ _________ _________ __> From: Sefton <seftonmichelle>> cholesteatoma> Sent: Fri,

November 20, 2009 4:43:01 AM> Subject: Re: New victim>>> Malerie,>> Why can't you see Dr. Pensak before surgery? I think I would want to meet> him and at least get any questions I had answered. If you do have questions> or concerns I would at least call the office and get them answered.>> I know how you feel. I am 41 years old with three kids, ages 14, 11, and> 8. I never had any problems with my ear until about 4 years ago it became> "plugged up". I kept going to my family doctor and he kept telling me> nothing was wrong. Finally, he referred me to an ENT who told me I had> otosclerosis and to come back in a year for another hearing test. To make a> long story short, I got a second opinion and he did a CT scan and found the> C-toma. So to go from nothing is wrong to suddenly you

have something in> your ear that requires surgery is quite dishearteneing. I had some time> between diagnosis and my actual surgery which in my opinion is almost> worse. The less time you have the less time you worry and really the> worrying is the hardest part. I had my CT scan in Dec. and surgery wasn't> until Aug. I wish I wouldn't have waited so long- I may have had better> results in the end.>> But as far as the surgery itself. Going in my doctor thought he was going> to do Canal Wall Up, but once he got in there it was worse than the scan> showed. He said it was about the size of my thumb, ate away 1-/2 of my> hearing bones and part of the third. It also at away about 8mm of the bone> between the ear and brain, exposing part of the Dura of the brain, and he> had to peal it off the facial nerve. He ended up

doing Canal Wall Down. I> am not telling you all of this to scare you. My point is, I had all of this> done, outpatient, and it wasn't as bad as I thought. Now I had a slight> complication with the prothesis- he thinks he pulled something too tight and> caused an inner ear fluid leak because I did have sever dizziness for about> a week after surgery. I wasn't able to drive for 2 weeks. It was supposed> to be 3 days but mine was a bit longer because of the dizziness. So even> the worst case senario, I was down for about two weeks,> which I believe is on the long side.>> I also tired out easily for about 2-3 weeks and I believe that is the> anesthesia. Everything I worried about I shouldn't have. The anethesia> went well, I didn't even know I had a breathing tube, it wasn't painful. I> had pain right after

surgery and they gave me percoset. It made me deathly> ill so I didn't take any more. I took extra strength Tylenol for about a> week if that. I was also on prednisone for the problem with the inner ear> fluid leak.>> And now, 3 months after surgery I am doing great. I went on my first plane> trip since surgery and didn't have any pain! I do still have ringing in> that ear which I don't think will ever go away. I also have about a 15%> hearing loss in that ear which I don't think is that bad. But my ear still> feels "plugged up" which I was hoping that feeling would go away. I guess> that is just the hearing loss. Also, the area around my ear on my head> feels weird. Not exactly numb but kind of. The incision looks great- I> didn't have any outter stitches- just a steri strip that they removed

after> 2 weeks. I do have a taste disturbance, which is getting better. Right> after surgery everything tasted (or I should say didn't taste!) like> cardboard. And the right side of my tongue is still slightly numb- but it> keeps getting better.>> I'm probably telling you too much, but it helped me to hear from people who> had been through this. I too, was worried about how I would manage with 3> kids after surgery. My husband took off three days and my mom came and> stayed with us for a week. Let people help you if you have that> opportunity. Concentrate on healing and drink, drink, drink lots of fluids> after surgery to flush all that anesthesia out of your system. Also get up> and walk around as much as possible!!!>> If you have any questions feel free to ask. I will be thinking about you> and

when you are feeling better let us all know how surgery went.>> Best of luck!> >> >>>>>>>>>>From: malerieace <malerieace@ . com>>>>>Subject: New victim>>>>cholesteatoma>>>>Date: Tuesday, November 3, 2009, 2:00

PM>>>>>>>>>>>>>>>>Hello my name is Malerie and I am really glad to know I am not alone out>>>> there. My storey starts early on I had multiple ear infections as a>>>> small child one of my earliest memories is waking up in the hospital>>>> from tubes being put in. It was a big deal in 1981. After having tubes 3>>>> times I still had reocurring ear infections and sinusitis all through my>>>> childhood and teenage years. During my senior year in high school(1996->>>> 97) I became extremely ill. I was so dizzy I could not walk 5 ft from my>>>> sickbed to my bathroom. I had to crawl which I can tell you was not just>>>> a little bit humbling... After being told several times by the doctor I>>>> had blisters on my eardrums my mother finally got fed up

and scheduled>>>> me with an ent. I went to this doctor and he told me there was nothing>>>> wrong with me and to stop taking all the antibiotics. I cried all the>>>> way home I was trully sick and no one believed me. So I sucked it up and>>>> went back to school and constantly> fought back sick waves of dizziness. I lived that way through metting my> husband, having my first and second child and working. Until July of 2005> when we went swimming in the local communityh lake and I came up with an ear> infection that layed me low. I was so sick my throat started closing up and> everything. After my round with really good antibiotics my Right ear was> never the same it would itch and ache I would clean it with a q-tip and the> q-tip would be nothign but solid reddish brown afterwards. I finally went to> a night clinic and that is were I

recieved my first diagnosis of c-toma in> the right ear. I was very scared, I had no insurance and a very poor paying> job two children to support and my husband didn't have a very good paying> job either and no insurance. But I trucked on to the ent anyway and he was a> real jerk. He kept pushing surgery without any thought to how I could even> pay for it so I gave up, and did not go back. I told a cousin of> mine about my situation and she worked for the radiology department of a> hospital and she set my up with the head and neck surgon at her hospital. He> was very kind and patient. He informed me of all I needed to know about this> condition and had a ct ran of my mastoids. When I went back to see him he> told me the c-toma was gone! I was overjoyed! But as the years went on, I> got a better job one with insurance,but the pain in my right ear never got> any better I

went through the tough antibiotic drops and z-packs but nothing> ever helped for long stretches. Also my left ear was starting to fail me..> Finally one day this Oct. I was sitting outside in the garage with my> husband on my left and the family beagle on my right. My husband said "Boy> that dog is snoring to beat all!" I said what are you talking about I can't> hear him snoring. I had to turn and listen intently with my left ear to even> hear him and he was sitting right next to me! My husband said see!> I told you you couldn't hear it thunder! I was very upset.I kinew my> hearing was bad but I did not realize it had gotten this bad! So I made my> appointment with the doc and she felt it was time for me to go on to the ent> since I never saw her when my ears felt normal. The ent who is great by the> way looked at my right ear with his high-powered microscope and told me

the> c-toma had eroded some of my bone! I thought it was gone and now they are> telling me it has eaten away at my bones! So that was last tuesday in which> he also told me there was a tiny hole in my left ear and sent me for a ct> scan on thursday. This week I am scheduled for my audiology on thursday and> I have no idea what to expect. I would also like to know if anyone else has> experienced extreme fatigue with this thing? Since my senior year, I can not> get enough sleep. I have been treated for depression but I still want to> sleep all the time. Sometimes I physically have to my eyes will> become unfocused and my head will just swim I will also get extremely> nausous. Is this part of this condition ? The doctor told me the c-toma was> probably from all the tubes I had had but wouldn't have shown up sooner if> so? I just have no idea what to expect I know they want

to do surgery and> that guy is in cincinati OH 2 hours away from me.. But other than that I am> just floating in a sea of unknowing. Let me know if anyone has any info.>>>>>>>>>>>>>>>>>>>>