new to this

[Guest guest]

Your Dr should have the normal values.

I would not expect Lotrel to work very weil in PA. What were you one before?

CE Grim MD

[Guest guest]

Your Dr should have the normal values.

I would not expect Lotrel to work very weil in PA. What were you one before?

CE Grim MD

[Guest guest]

This is the common problems of low K. Try to track back all of you Ks in the

past.

The family problems in familial PH are early strokes esp in men.

In a message dated 8/1/04 1:26:03 PM, bev2454@... writes:

<< I will continue to try to contact family members and see if they have had

low

potassium problems. What other symptoms do I/they look for? I had absolutely

NO idea that my potassium was low when it was 2.8. I just felt completely

wiped out, no energy, and was having some neck pain that sent me to the

cardiologist to make sure there wasn't blockage. As it turned out,

everything was ok

there, after a number of tests and scares.......

bevAnnie >>

[Guest guest]

This is the common problems of low K. Try to track back all of you Ks in the

past.

The family problems in familial PH are early strokes esp in men.

In a message dated 8/1/04 1:26:03 PM, bev2454@... writes:

<< I will continue to try to contact family members and see if they have had

low

potassium problems. What other symptoms do I/they look for? I had absolutely

NO idea that my potassium was low when it was 2.8. I just felt completely

wiped out, no energy, and was having some neck pain that sent me to the

cardiologist to make sure there wasn't blockage. As it turned out,

everything was ok

there, after a number of tests and scares.......

bevAnnie >>

[Guest guest]

In a message dated 8/1/04 1:28:36 PM, bev2454@... writes:

<< PS- I assume someone has asked if you eat licorice every day or so. This

> can cause what looks like PA but plasma and urine aldo will be very low.

No, no one has asked if I eat licorice, and the only licorice I eat is maybe

a black jelly bean once in a while. I keep jelly beans in my purse in case my

sugar drops.......or I get a craving.....<smile>......it's usually only two

or

three when I do though, but they're seldom black..... would that hurt? >>

No a few wont hurt. You know if you have seen a Dr. who know's what he (or

she) is doing if you have HTN and/or Low K and they ask you if you eat licorice

every day.

Apparanly your team is not well informed. Please tell them about licorice.

[Guest guest]

In a message dated 8/1/04 1:28:36 PM, bev2454@... writes:

<< PS- I assume someone has asked if you eat licorice every day or so. This

> can cause what looks like PA but plasma and urine aldo will be very low.

No, no one has asked if I eat licorice, and the only licorice I eat is maybe

a black jelly bean once in a while. I keep jelly beans in my purse in case my

sugar drops.......or I get a craving.....<smile>......it's usually only two

or

three when I do though, but they're seldom black..... would that hurt? >>

No a few wont hurt. You know if you have seen a Dr. who know's what he (or

she) is doing if you have HTN and/or Low K and they ask you if you eat licorice

every day.

Apparanly your team is not well informed. Please tell them about licorice.

[Guest guest]

Prob OK. Were you having diarrhea which will cause low K.

The way to check is to measure K in the blood and the urine and if it is high

in both then the kidney is losing K for some reason. If it is low in urine

then Kis being lost from sweat or vomit or diarrhea or the intake is very low

or a permutation or combination of these.

[Guest guest]

Prob OK. Were you having diarrhea which will cause low K.

The way to check is to measure K in the blood and the urine and if it is high

in both then the kidney is losing K for some reason. If it is low in urine

then Kis being lost from sweat or vomit or diarrhea or the intake is very low

or a permutation or combination of these.

[Guest guest]

Just after writing this, I went to the Dr. He called & gave my

practioner a bit of a reproach. He said I have a small scar on my

TM, but NOT cholesteatoma! WOO HOO!

I love this site & thank you all for being so open. Hopefully I

won't need to return, but if I do, I know I'll be better for it.

Connie

>

>

> I was just diagnosed last week with a cholesteatoma. I see

> the " surgeon " today to find out what is next.

>

> I feel like the whole left side of my head is kind of numb, have a

> lot of " white noise " type sound on that side & even the drainage

> from time to time. Most the time the canal just itches.

>

> My family practioner who found it said they will be moving fast

once

> I have this appt today. What is realistic for timing?

>

> How long do I need to usually plan off work from the procedure?

> Does anyone know if I have it during November if I'd be able to fly

> for Christmas?

>

> Any help would be so appreciated.

>

> Connie

[Guest guest]

Connie,

I have never had any restrictions as far as flying is concerned, but you will need to ask the doctor as each procedure has different guidelines to follow. Depending on what they find they may get you scheduled immediately for surgery or you may be bumped for a few weeks or even months. The sooner the better though. Depending on which procedure you have done and what your job entitles, I would plan at least a week off work. My last surgery in August was done on a Wednesday and I was back at work on Monday but I work in an office and don't have any strenuous activities to perform. Plus throw in the 2 day weekend and I had a total of 5 days off. The timing actually worked out to my advantage so I only missed 3 days of work. Good luck and keep us posted on how it goes.

connielinz <wesnconnie@...> wrote:

I was just diagnosed last week with a cholesteatoma. I see the "surgeon" today to find out what is next.I feel like the whole left side of my head is kind of numb, have a lot of "white noise" type sound on that side & even the drainage from time to time. Most the time the canal just itches.My family practioner who found it said they will be moving fast once I have this appt today. What is realistic for timing?How long do I need to usually plan off work from the procedure? Does anyone know if I have it during November if I'd be able to fly for Christmas?Any help would be so appreciated.Connie

[Guest guest]

Hi Connie

Tne usual recommendation is no flying for about six weeks following any kind of major ear surgery. I don't think it's an idle ban, altitude is hard enough on normal healthy ears and I dare say the pressure of descent could cause the newly healing wounds inside the ear to be disturbed or rupture. Talk it through with your doctor if the "no flying" is going to be a problem.

Recovery time is different for everyone and may be affected by your age and and the kind of post-operative symptoms you have which often include things like dizziness, fatigue, a sore head and some bleeding/discharge. It may be useful to plan about two weeks rest if that's possible - it's always possible to rush back to work too soon but never too late. What sometimes happens is that you feel fine sitting around at home doing nothing then get back to work and quickly realize that you're not so fit as you thought. The surgery and anaesthetic are often exhausting and it takes time to heal fully.

Best wishes for the op

Phil

New to this

I was just diagnosed last week with a cholesteatoma. I see the "surgeon" today to find out what is next.I feel like the whole left side of my head is kind of numb, have a lot of "white noise" type sound on that side & even the drainage from time to time. Most the time the canal just itches.My family practioner who found it said they will be moving fast once I have this appt today. What is realistic for timing?How long do I need to usually plan off work from the procedure? Does anyone know if I have it during November if I'd be able to fly for Christmas?Any help would be so appreciated.Connie

[Guest guest]

There are several bandster near you. If you would email me at

<montongost > (removing spaces), I'll add you to the

monthly notices for the West Sounders meetings. We generally meet in

Central Kitsap, but there are some meetings planned in South Kitsap

in the fall. We try to keep it to the 3rd Sunday of the month at

1pm... only the location changes. If you'd like to start a different

group to meet in the evening, go for it! I'm a ferry commuter, so

weekends work better for me. There are others in the area who might

prefer an evening meeting.

Jo in Silverdale

> Hi, I have just recently been banded (06-08-05 Dr. Montgomery) and

> this is my first post. I have been reading the postings that are

here

> and they are interesting and informative. I would like any advice

> or " tips " that anyone can provide for a newbie. Also, is there

anyone

> close to the South Kitsap area? Thanks.

[Guest guest]

Kari,

Is there a name for this excercise? I'd be interested in learning

more about it as my son's feet face in the same direction when in a

supine position due to issues with his hip. Is this excercise

supposed to help address that?

Val

====================

Do you know what the physiological theory is when you rotate your

right foot to the right hold your arm out and make a figure 6 in the

air? It changes your foot to rotate in the opposite direction? In my

Brain Gym for Sr's class someone asked this question and I do not have

any idea? Hope you are enjoying your new home.

[Guest guest]

My daughter, was around 26 months when we started chemo for AML. We were in the hospital for 5 days getting chemo, discharged, and within a week we were back in for fever/ low WBC counts. We were in the hospital for about a week, and then discharged. Here first and her last treatment seemed to be the hardest on her. The doctors and nurses told me that each child is very different. Some get there chemo and have very little readmissions for fever /low blood counts and other children take longer to have their counts bounce back and spend lots of time in the hospital. I know it is scary and frustrating, but hang in there. bmschmeltzer <bmschmeltzer@...> wrote: hi to all,my now 11 months

daughter Hannah (ds) was diagnosed with AML 21 days ago. we're still in the hospital waiting for her counts to start to recover from her first induction cycle. can anyone tell me how long your first hospital stays were?

[Guest guest]

Hi!!

My son was diagnosed when he was 31 months and his first stay was about 2 weeks, although all kids are different. He did wonderfully through treatment and has now been in remission for 5 years. YAY!!

Where is your daughter recieving her treatment at?

Hugs

[ ] new to this

hi to all,my now 11 months daughter Hannah (ds) was diagnosed with AML 21 days ago. we're still in the hospital waiting for her counts to start to recover from her first induction cycle. can anyone tell me how long your first hospital stays were?

[Guest guest]

Hi,

my daughter was diagnosed with AML at the same time as Hannah. She

had her first round of chemo for 1 week non stop. We were then sent back

home but the doctor warned us that she would be back to the hospital due to

chemo complications and so that happened.... we were back there 5 days and

stayed in the hospital for 35 days. That was the longest period we had to

stay in the hospital with her. is now 6 and out of chemo for 3 years

and 8 months. Hang in there . All the best for you and your family,

Simone Wheeler.

[ ] new to this

> hi to all,

> my now 11 months daughter Hannah (ds) was diagnosed with AML 21 days

> ago. we're still in the hospital waiting for her counts to start to

> recover from her first induction cycle. can anyone tell me how long

> your first hospital stays were?

>

>

>

>

>

>

>

[Guest guest]

Thanks,

It's good to know that ther is a light at the end of the tunnel. It

is so wonderful to hear of all of the kids that are in remission or

cured. Today was the first day that her ANC count was above 0 since

not long after she started the chemo. We are trying to patiently

waiting for her counts to begin to recover.

Thanks,

Beth

>

> Hi,

>

> my daughter was diagnosed with AML at the same time as

Hannah. She

> had her first round of chemo for 1 week non stop. We were then

sent back

> home but the doctor warned us that she would be back to the

hospital due to

> chemo complications and so that happened.... we were back there 5

days and

> stayed in the hospital for 35 days. That was the longest period we

had to

> stay in the hospital with her. is now 6 and out of chemo

for 3 years

> and 8 months. Hang in there . All the best for you and your family,

>

> Simone Wheeler.

> [ ] new to this

>

>

> > hi to all,

> > my now 11 months daughter Hannah (ds) was diagnosed with AML 21

days

> > ago. we're still in the hospital waiting for her counts to

start to

> > recover from her first induction cycle. can anyone tell me how

long

> > your first hospital stays were?

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Beth,

Where are you located? My son, is 9 months old and is currently receiving treatment in Chicago. He has AML. Email me directly at Bluyz1966@... if you want to talk.

Thanks!

from MI

Thanks,It's good to know that ther is a light at the end of the tunnel. It is so wonderful to hear of all of the kids that are in remission or cured. Today was the first day that her ANC count was above 0 since not long after she started the chemo. We are trying to patiently waiting for her counts to begin to recover.Thanks,Beth

[Guest guest]

Wednesday, March 29, 2006, 6:41:36 PM, you wrote:

CmL> I was just banded on March 18th. right now I am

CmL> losing my mind with

CmL> hunger. I want to know if anyone has felt this

CmL> before. I am still

CmL> supposed to be on liquid diets but this is

CmL> killing me and I am always

CmL> hungry. This does not seem normal to me at all.

CmL> Please help!!!!

It sounds completely normal to me. Your stomach is used to being full

of stuff. What it is getting now is liquids that go through quickly.

I'm sure every one of us has felt this way right after being banded.

Things will change as you get to real food. How long does your doc

keep you on liquids? Eleven days is longer than most require.

dan

Dan Lester, Boise, ID honu@... www.mylapband.tk

Dr. Ortiz, Tijuana, 4/28/03

323/209/199 Age 63 The road goes on forever....

[Guest guest]

, This first 6 weeks or so is a very hard time for all of us.

your hunger has returned, but you're still on liquids. it is very

normal to be hungry, becuase your band really isn;t working until you

get to a good fill level in several months.

If you're allowed " full liquids " that means anything that is pureed,

and then thinned enough to be able to get through a straw. Don't

actually USE the straw, but that is the test.

Eat good protein, and that will help your hunger. Puree and then thin:

meaty soups, chili, meaty spaghetti sauce, refried or other beans,

meatloaf, and canned and cooked veggies or fruit, oatmeal, low-cal

puddings, drinkable yogurt, pureed and thinned soft stew meat or canned

meat. Drink lots of water- at least 8 glasses a day. the liquid in

the " foods " will add more fluid. This is a good time for a few protein

drinks too - maybe one a day.

Eat what you need to to be satisfied; there is no reason to be hungry

and miserable. Just do your best to fill up on lower-cal things, and

you cn lose a bit of weight even in this hard period. Liquids with good

protein and calories stop hunger too.

Sandy R

>

> I was just banded on March 18th. right now I am losing my mind with

> hunger. I want to know if anyone has felt this before. I am still

> supposed to be on liquid diets but this is killing me and I am always

> hungry. This does not seem normal to me at all. Please help!!!!

>

[Guest guest]

> I am allowed full liquids so I will try your suggestions. I just get

> bored of eating the same thingsa dn I think my body is craving taste.

> Food that is blended is not so pretty to look at. SO anymore

> suggestions on food and what I can make to add variety would be

> helpful.

Hi Bertha,

I found that blending Dinty beef stew and adding enough beef broth

to thin it satisfied my mouth hunger for chewable foods. I told myself

to think of it like one of those fancy vegetable purees that are

fashionable every so often. I only needed that for the first time,

after that the satisfaction of the taste was enough. And if you buy the

larger than single serving cans, be sure and blenderize the whole can

because the meat sinks to the bottom. If you scoop out a third from the

top of the can, it will be all vegetables and doesn't taste as good.

Liz, the carnivore, in Bellevue WA

[Guest guest]

The high pressure! I can relate - I live in Florida and I could

always predict when a " cold " front was coming. My ears feel stuffy

and my hearing gets worse. I travel a lot for business (about once

every two weeks), so then I would hop on a plane & I could hear

again! I knew there was something going on, although I had NO IDEA

it was a c-toma (although I had one in my left ear a few years

ago). I did not realize that a c-ctoma had anything to do with

eustachian tubes. At any rate, I saw my ENT last week and I am now

going to the specialist (otologist) tomorrow who performed the

surgery in my left ear. I am just hoping that my eustachian tubes

aren't working probably & the c-toma hasn't had a chance to grow in

my right ear. I'm sorry to hear that you have to go to the

unpleasant doctor. Could you see an otologist rather than an ENT?

My ENT told me that because he does not perform these surgeries very

often, I should see someone who does (the otologist).

>

> This is so cool that there is a whole group of people that have

the

> same concerns/fears/issues I do! This is going to be a very long

&

> involved first posting as I've kept most of this bottled up for

> nearly a year. I was first 'diagnosed' (for some reason writing

that

> out makes me feel like a terminally ill person) with a

cholesteatoma

> in my right ear September 2005. I had a hellacious ear infection

out

> of nowhere (or so I thought) that felt like someone was blowing my

> eardrum up like a balloon & then stabbing it with a knife. Being

a

> typical impecunious student I didn't have health insurance so I

went

> to the student health center (SHC) & they gave me some

antibiotics.

> I had an ear infection for the better part of 6 weeks. Finally it

> cleared up enough for a particularly observant doctor to notice

there

> was something behind my eardrum that shouldn't be there. He

referred

> me to a specialist. I don't know if any of you are in the

> Albuquerque, NM area or familiar with it, but around here

specialists

> are few & far between so appointments are usually made 2 months

out.

> I think I made a bad impression in the ENT when we first met -

when I

> went in I wouldn't shake his hand because I had a cold & just

sneezed

> on my hand & didn't have time to wash them (I was actually on my

way

> to wash them when he called on me). I am a very germ-aware person

&

> think it's rude to knowingly spread germs around. Although in

> hindsight he's an ENT & is in constant contact with 'mucousy'

> children so it probably would have been OK to shake his hand. He

was

> very abrupt with me. He didn't seem to care that I was still in

> immense pain even though the infection had cleared up. It hurt in

> waves/pangs & hurt enough to make my right arm twitch & sometimes

fly

> out uncontrollably. A big problem because I was a bartender at

the

> time & was constantly throwing drinks around!) His response to my

> concerns with the pain was " I don't know why it hurts. If you get

> discharge, call us. " That's it! I also think he did a pre-

judgment

> of me because I am young (26) & have collected a few tattoos & he

is

> a military trained doc (marine). (Although the reverse is true,

> too. I judged him to be prejudiced against me because he is

military

> trained. Oh well, onwards & upwards.) I had the CTs done; they

> found I have what appeared to be 2 separate tumors. One behind in

my

> inner ear & one in my middle ear, connected somewhere in the

middle

> there. I didn't get to look at my CTs because the imaging place

only

> had them on a disk & because I thought the doctors office would

> request the films be sent over (silly me) I didn't have time to

get

> the imaging place to print them before my follow up. After

looking

> at the CTs, doc came back, explained to me what he thought, told

me

> about the surgery, that I needed to get it done within the next 3-

6

> months, they are probably congenital, seemed imposed upon when I

> asked him to explain more to me about where the tumors were, ect.,

> ect. Then I explained to him that I had no health insurance, he

> seemed shocked & not able to comprehend that it's possible to not

> have health insurance this day and age. I had a post card

reminder

> filled out for me to call them in 3 months. So far, I have to

say, I

> am not at all impressed with Albuquerque doctor's customer

service.

> I went back to the SHC doc, who was very interested in my case b/c

he

> had never seen one before. He gave me info on some free health

> insurance offered by the university hospital. Getting that took

some

> doing. I had to get denied by Medicaid first, there are residency

> requirements (I've only been in New Mexico since June 2005),

> eligibility appointments are a month out. Then there's a referral

> requirement. All of these events have a 3-month delay between

> events. So I finally went to the surgery specialist last month.

He

> explained that the pain is most likely coming from the fact that

my

> eardrum is super-stretched over some bones & such. He also linked

it

> to the fact that my eardrums are inverted? What an odd thing to

> happen! He told me I have the tumors because my mum made the

> decision to not put tubes in my ears when I was a kid. She didn't

> think the side effects were much different from the ear problems I

> already had. Hearing test = moderate hearing loss. I can't hear

> high frequency noises (like microphone feedback but I've got

tennitus

> in that ear so bad it sounds like feedback all the time) & I can't

> hear really low frequencies. I don't have examples of the low

> frequencies because they didn't give them to me & I can't hear

them!

> I find the hearing loss somewhat useful when listening to people

who

> bore me, or for really obnoxious sounds, I just make sure they are

on

> my right side! I know it's rude but I can't help it, I have to

have

> some kind of benefit out of all this! I really like the

specialist I

> saw but he's not actually a specialist, he's a PA. He really

> listened to my concerns - the one's I could think of, I get

nervous

> when I talk to doctors & forget to ask a lot of things. I always

> write the stuff I want to ask down the night before the

appointment

> but then forget my paper. I found out that the first doc I went

to

> see is the only one who does surgery for this clinic! So then I

get

> this job (first day the day I went to see the specialist) with

really

> good health insurance & coverage. They don't consider this a pre-

> existing condition so the surgery is covered. So I'm on their

site,

> looking for another ENT to go to & take a wild guess who the only

ENT

> in the area accepts my insurance? I can't seem to get away from

this

> guy! So, now that I am done with the long, involved, stultifying

> story, here are my questions/concerns:

>

> * My ENT is well qualified to perform my surgery, should I search

for

> another doctor in Santa Fe that I am more comfortable with? I

mean,

> is bedside manner all that important?

>

> * My ear itches constantly. I mean constantly. You'd think I had

> mites or something. Is this normal? I think it might itch all

the

> time because I can't ever scratch it as it's on the inside.

>

> * When there's high pressure in the weather my ear feels like it

is

> stuffed with cotton. Again, normal?

>

> * Is it really so bad to use q-tips? I've already got the tumors,

> what more could happen? Also, it really helps to relieve some of

the

> inside itching, even if it is temporary. I've also already had

the

> worse earache/infection known to man (or to myself) that I could

> possibly have. If I handled that I believe I could handle a small

> one because of the dirt.

>

> * Why did no other doctor see this in the past 26 years????? This

is

> what upsets me the most. I've had problems with my sinuses/ears/

> tonsils all my life. I had my tonsils removed when I was 23

because

> they were blocking my eustachian tubes. Why didn't that doctor

> notice anything? When I would go to the doc for sinus infections

> they would always check my ears & clean them for me because I use

q-

> tips & the wax would get stuck. I was always surprised when they

> said there was a bit that just wouldn't come out. Now I find out

> that the bit not coming out was a tumor.

>

> * I sometimes get bits of hard, nerd-shaped & sized red or dark

brown

> wax in my ear - what are these - are these bits of my tumor

falling

> out?

>

> * I read in a google group that some cholesteatomas will just stop

> growing & sit in your ear like a lump & your really don't need

> surgery. I really don't want to ask this one to the doc because

of

> course they are going to say this is completely false & surgery is

> absolutely necessary - they have to eat & pay bills, too!

>

> * What's post-surgery like?

>

> * Does tennitus gets worse?

>

> * Does it leave a scar? I think a scar on the back of the ear

would

> be kind of cool, like enstein's monster.

>

> * Why won't they let you keep the tumor? This sounds like an odd

> request but I have not seen anything of mine & I think if I could,

I

> would be less anxious about the whole thing.

>

> * Would they let me videotape the surgery if I can't have the

tumor?

>

> * What is the danger of the surgeon 'slipping' & hurting vital

parts

> of your ear & /or brain?

>

> *Were any of you incredibly anxious about this whole thing,

loosing

> sleep, becoming overly emotional? I cried a lot & still get tight-

> throated & stingy eyed if I think about it too much or ask the

> doctors questions. I seem to be more keenly aware of my mortality

> now. I have found vitamin B helps with this.

>

> I know I should call the doctor & ask these questions but I don't

> want to be one of those 'the sky is falling!' patients. They seem

> busy enough when I'm there, I don't want to intrude on other

> patient's time.

>

> Thanks for letting me rant! Like I said before, I've had this

> bottled up for the better part of a year now & it feels good to

> finally see that other people are inflicted with this.

>

[Guest guest]

If you are not pleased with your Doc then by all means

look for another. As far as your Doc being a Marine

Doc, that's not possible (there are no Marine Corps

Doc's). The Marines get their medical needs provided

by the Navy. Navy Doc's are taught to be aggressive

when treating patients as they don't get payed per

patient or procedure They do not want to have same

patient come back with the same problems. My CWD was

done by a Navy Doc and glad it was. I have gone 27

years without mine coming back. I would rethink about

not using this Doc as in my opinion they are among the

best.

As to your tattoo's, if you did not know most of the

inks used with tattoo's have metal compounds in them.

Depending on where and how many tattoo's you have it

could possibly keep you from having or limiting the

amount of MRI's or CT scans you can have. CT's and

MRI's use magnets in the process which could turn that

body part and or area into a human micro wave.

As to your problems with germs, C-toma to my knowledge

does not form that way nor grow that way. Discharge

is a side affect from c-toma, it is generally produced

when the tumor is growing. It should be a

greenish/yellowish color and stinks to high heaven.

The discharge is also a by-product of the c-toma

eating away the bones in your inner ear. So, it is a

way for the Doc to judge the rate of growth in

relation to how quickly the surgery needs to be done.

Hopefully someone in the group can point you in the

right direction of finding a Doc for you in your

area....

tom hansen

--- sp1d3y_v3n0m <5P1D3YV3N0M@...> wrote:

> This is so cool that there is a whole group of

> people that have the

> same concerns/fears/issues I do! This is going to

> be a very long &

> involved first posting as I've kept most of this

> bottled up for

> nearly a year. I was first 'diagnosed' (for some

> reason writing that

> out makes me feel like a terminally ill person) with

> a cholesteatoma

> in my right ear September 2005. I had a hellacious

> ear infection out

> of nowhere (or so I thought) that felt like someone

> was blowing my

> eardrum up like a balloon & then stabbing it with a

> knife. Being a

> typical impecunious student I didn't have health

> insurance so I went

> to the student health center (SHC) & they gave me

> some antibiotics.

> I had an ear infection for the better part of 6

> weeks. Finally it

> cleared up enough for a particularly observant

> doctor to notice there

> was something behind my eardrum that shouldn't be

> there. He referred

> me to a specialist. I don't know if any of you are

> in the

> Albuquerque, NM area or familiar with it, but around

> here specialists

> are few & far between so appointments are usually

> made 2 months out.

> I think I made a bad impression in the ENT when we

> first met - when I

> went in I wouldn't shake his hand because I had a

> cold & just sneezed

> on my hand & didn't have time to wash them (I was

> actually on my way

> to wash them when he called on me). I am a very

> germ-aware person &

> think it's rude to knowingly spread germs around.

> Although in

> hindsight he's an ENT & is in constant contact with

> 'mucousy'

> children so it probably would have been OK to shake

> his hand. He was

> very abrupt with me. He didn't seem to care that I

> was still in

> immense pain even though the infection had cleared

> up. It hurt in

> waves/pangs & hurt enough to make my right arm

> twitch & sometimes fly

> out uncontrollably. A big problem because I was a

> bartender at the

> time & was constantly throwing drinks around!) His

> response to my

> concerns with the pain was " I don't know why it

> hurts. If you get

> discharge, call us. " That's it! I also think he

> did a pre-judgment

> of me because I am young (26) & have collected a few

> tattoos & he is

> a military trained doc (marine). (Although the

> reverse is true,

> too. I judged him to be prejudiced against me

> because he is military

> trained. Oh well, onwards & upwards.) I had the

> CTs done; they

> found I have what appeared to be 2 separate tumors.

> One behind in my

> inner ear & one in my middle ear, connected

> somewhere in the middle

> there. I didn't get to look at my CTs because the

> imaging place only

> had them on a disk & because I thought the doctors

> office would

> request the films be sent over (silly me) I didn't

> have time to get

> the imaging place to print them before my follow up.

> After looking

> at the CTs, doc came back, explained to me what he

> thought, told me

> about the surgery, that I needed to get it done

> within the next 3-6

> months, they are probably congenital, seemed imposed

> upon when I

> asked him to explain more to me about where the

> tumors were, ect.,

> ect. Then I explained to him that I had no health

> insurance, he

> seemed shocked & not able to comprehend that it's

> possible to not

> have health insurance this day and age. I had a

> post card reminder

> filled out for me to call them in 3 months. So far,

> I have to say, I

> am not at all impressed with Albuquerque doctor's

> customer service.

> I went back to the SHC doc, who was very interested

> in my case b/c he

> had never seen one before. He gave me info on some

> free health

> insurance offered by the university hospital.

> Getting that took some

> doing. I had to get denied by Medicaid first, there

> are residency

> requirements (I've only been in New Mexico since

> June 2005),

> eligibility appointments are a month out. Then

> there's a referral

> requirement. All of these events have a 3-month

> delay between

> events. So I finally went to the surgery specialist

> last month. He

> explained that the pain is most likely coming from

> the fact that my

> eardrum is super-stretched over some bones & such.

> He also linked it

> to the fact that my eardrums are inverted? What an

> odd thing to

> happen! He told me I have the tumors because my mum

> made the

> decision to not put tubes in my ears when I was a

> kid. She didn't

> think the side effects were much different from the

> ear problems I

> already had. Hearing test = moderate hearing loss.

> I can't hear

> high frequency noises (like microphone feedback but

> I've got tennitus

> in that ear so bad it sounds like feedback all the

> time) & I can't

> hear really low frequencies. I don't have examples

> of the low

> frequencies because they didn't give them to me & I

> can't hear them!

> I find the hearing loss somewhat useful when

> listening to people who

> bore me, or for really obnoxious sounds, I just make

> sure they are on

> my right side! I know it's rude but I can't help

> it, I have to have

> some kind of benefit out of all this! I really like

> the specialist I

> saw but he's not actually a specialist, he's a PA.

> He really

> listened to my concerns - the one's I could think

> of, I get nervous

> when I talk to doctors & forget to ask a lot of

> things. I always

> write the stuff I want to ask down the night before

> the appointment

> but then forget my paper. I found out that the

> first doc I went to

> see is the only one who does surgery for this

> clinic! So then I get

> this job (first day the day I went to see the

> specialist) with really

> good health insurance & coverage. They don't

> consider this a pre-

> existing condition so the surgery is covered. So

> I'm on their site,

> looking for another ENT to go to & take a wild guess

> who the only ENT

> in the area accepts my insurance? I can't seem to

> get away from this

> guy! So, now that I am done with the long,

> involved, stultifying

> story, here are my questions/concerns:

>

> * My ENT is well qualified to perform my surgery,

> should I search for

> another doctor in Santa Fe that I am more

> comfortable with? I mean,

> is bedside manner all that important?

>

> * My ear itches constantly. I mean constantly.

> You'd think I had

> mites or something. Is this normal? I think it

> might itch all the

> time because I can't ever scratch it as it's on the

> inside.

>

> * When there's high pressure in the weather my ear

> feels like it is

> stuffed with cotton. Again, normal?

>

> * Is it really so bad to use q-tips? I've already

> got the tumors,

> what more could happen? Also, it really helps to

> relieve some of the

> inside itching, even if it is temporary. I've also

> already had the

> worse earache/infection known to man (or to myself)

> that I could

> possibly have. If I handled that I believe I could

> handle a small

> one because of the dirt.

>

> * Why did no other doctor see this in the past 26

> years????? This is

>

=== message truncated ===

__________________________________________________

[Guest guest]

If it were me or my son, the first thing I would want to know about this ENT doctor you have been seeing is whether or not he is experienced with cholesteatoma. You really want a doctor who has considerable experience with cholesteatoma. I would find a doctor that was both experienced with cholesteatoma AND who would talk to me. It sounds like you are extremely anxious due to the fact that your doctor has not been up front with you. I understand it may be a drive to go to Santa Fe, however, I think if there is a doctor there with experience in this particular area it would be worth your time and peace of mind to get a second opinion from him.

As far as it being congenital, this is the first time I have ever heard that c-toma could be congenital. However, there are many much more experienced people in this group than I am...maybe they have heard of this.

Good Luck

New to this

This is so cool that there is a whole group of people that have the same concerns/fears/ issues I do! This is going to be a very long & involved first posting as I've kept most of this bottled up for nearly a year. I was first 'diagnosed' (for some reason writing that out makes me feel like a terminally ill person) with a cholesteatoma in my right ear September 2005. I had a hellacious ear infection out of nowhere (or so I thought) that felt like someone was blowing my eardrum up like a balloon & then stabbing it with a knife. Being a typical impecunious student I didn't have health insurance so I went to the student health center (SHC) & they gave me some antibiotics. I had an ear infection for the better part of 6 weeks. Finally it cleared up enough for a particularly observant doctor to notice there was something behind my eardrum that shouldn't be there. He referred me to a specialist. I don't know if

any of you are in the Albuquerque, NM area or familiar with it, but around here specialists are few & far between so appointments are usually made 2 months out. I think I made a bad impression in the ENT when we first met - when I went in I wouldn't shake his hand because I had a cold & just sneezed on my hand & didn't have time to wash them (I was actually on my way to wash them when he called on me). I am a very germ-aware person & think it's rude to knowingly spread germs around. Although in hindsight he's an ENT & is in constant contact with 'mucousy' children so it probably would have been OK to shake his hand. He was very abrupt with me. He didn't seem to care that I was still in immense pain even though the infection had cleared up. It hurt in waves/pangs & hurt enough to make my right arm twitch & sometimes fly out uncontrollably. A big problem because I was a bartender at the time

& was constantly throwing drinks around!) His response to my concerns with the pain was "I don't know why it hurts. If you get discharge, call us." That's it! I also think he did a pre-judgment of me because I am young (26) & have collected a few tattoos & he is a military trained doc (marine). (Although the reverse is true, too. I judged him to be prejudiced against me because he is military trained. Oh well, onwards & upwards.) I had the CTs done; they found I have what appeared to be 2 separate tumors. One behind in my inner ear & one in my middle ear, connected somewhere in the middle there. I didn't get to look at my CTs because the imaging place only had them on a disk & because I thought the doctors office would request the films be sent over (silly me) I didn't have time to get the imaging place to print them before my follow up. After looking at the CTs, doc came back, explained to me what

he thought, told me about the surgery, that I needed to get it done within the next 3-6 months, they are probably congenital, seemed imposed upon when I asked him to explain more to me about where the tumors were, ect., ect. Then I explained to him that I had no health insurance, he seemed shocked & not able to comprehend that it's possible to not have health insurance this day and age. I had a post card reminder filled out for me to call them in 3 months. So far, I have to say, I am not at all impressed with Albuquerque doctor's customer service. I went back to the SHC doc, who was very interested in my case b/c he had never seen one before. He gave me info on some free health insurance offered by the university hospital. Getting that took some doing. I had to get denied by Medicaid first, there are residency requirements (I've only been in New Mexico since June 2005), eligibility appointments are a month out.

Then there's a referral requirement. All of these events have a 3-month delay between events. So I finally went to the surgery specialist last month. He explained that the pain is most likely coming from the fact that my eardrum is super-stretched over some bones & such. He also linked it to the fact that my eardrums are inverted? What an odd thing to happen! He told me I have the tumors because my mum made the decision to not put tubes in my ears when I was a kid. She didn't think the side effects were much different from the ear problems I already had. Hearing test = moderate hearing loss. I can't hear high frequency noises (like microphone feedback but I've got tennitus in that ear so bad it sounds like feedback all the time) & I can't hear really low frequencies. I don't have examples of the low frequencies because they didn't give them to me & I can't hear them! I find the hearing loss somewhat useful

when listening to people who bore me, or for really obnoxious sounds, I just make sure they are on my right side! I know it's rude but I can't help it, I have to have some kind of benefit out of all this! I really like the specialist I saw but he's not actually a specialist, he's a PA. He really listened to my concerns - the one's I could think of, I get nervous when I talk to doctors & forget to ask a lot of things. I always write the stuff I want to ask down the night before the appointment but then forget my paper. I found out that the first doc I went to see is the only one who does surgery for this clinic! So then I get this job (first day the day I went to see the specialist) with really good health insurance & coverage. They don't consider this a pre-existing condition so the surgery is covered. So I'm on their site, looking for another ENT to go to & take a wild guess who the only ENT in the area

accepts my insurance? I can't seem to get away from this guy! So, now that I am done with the long, involved, stultifying story, here are my questions/concerns:* My ENT is well qualified to perform my surgery, should I search for another doctor in Santa Fe that I am more comfortable with? I mean, is bedside manner all that important?* My ear itches constantly. I mean constantly. You'd think I had mites or something. Is this normal? I think it might itch all the time because I can't ever scratch it as it's on the inside. * When there's high pressure in the weather my ear feels like it is stuffed with cotton. Again, normal?* Is it really so bad to use q-tips? I've already got the tumors, what more could happen? Also, it really helps to relieve some of the inside itching, even if it is temporary. I've also already had the worse earache/infection known to man (or to myself) that I could possibly have.

If I handled that I believe I could handle a small one because of the dirt.* Why did no other doctor see this in the past 26 years????? This is what upsets me the most. I've had problems with my sinuses/ears/ tonsils all my life. I had my tonsils removed when I was 23 because they were blocking my eustachian tubes. Why didn't that doctor notice anything? When I would go to the doc for sinus infections they would always check my ears & clean them for me because I use q-tips & the wax would get stuck. I was always surprised when they said there was a bit that just wouldn't come out. Now I find out that the bit not coming out was a tumor.* I sometimes get bits of hard, nerd-shaped & sized red or dark brown wax in my ear - what are these - are these bits of my tumor falling out?* I read in a google group that some cholesteatomas will just stop growing & sit in your ear like a lump &

your really don't need surgery. I really don't want to ask this one to the doc because of course they are going to say this is completely false & surgery is absolutely necessary - they have to eat & pay bills, too!* What's post-surgery like? * Does tennitus gets worse? * Does it leave a scar? I think a scar on the back of the ear would be kind of cool, like enstein' s monster.* Why won't they let you keep the tumor? This sounds like an odd request but I have not seen anything of mine & I think if I could, I would be less anxious about the whole thing. * Would they let me videotape the surgery if I can't have the tumor?* What is the danger of the surgeon 'slipping' & hurting vital parts of your ear & /or brain?*Were any of you incredibly anxious about this whole thing, loosing sleep, becoming overly emotional? I cried a lot & still get tight-throated &

stingy eyed if I think about it too much or ask the doctors questions. I seem to be more keenly aware of my mortality now. I have found vitamin B helps with this.I know I should call the doctor & ask these questions but I don't want to be one of those 'the sky is falling!' patients. They seem busy enough when I'm there, I don't want to intrude on other patient's time.Thanks for letting me rant! Like I said before, I've had this bottled up for the better part of a year now & it feels good to finally see that other people are inflicted with this.

[Guest guest]

Thanks for all the replies! I didn't think anyone would read through

the novella I came up with! The doc had Marine Corps training.

Whether he was a doc in the Corps I have no idea, he just has a lot

of certificates from the Corps on his wall. The tattoo ink is

plausible in older inks but mine are newer (within the last 8 years)

& most good artists will not use inks with metal bits in them. I had

heard of this before I started getting tattoos. I know what kind of

ink they are using on me before they do it. But thanks for the heads

up on that! From what I've researched cholesteatomas can be

congenital or aquired. Doc said that the size, the kind of issues

I've had with the whole ear/nose/throat plumbing system since birth,

the fact that my tonsils had to be taken out because they were

blocking my eustachian tubes pretty much guarantees they are

congential. And my mum had military overseas shots during her first

month or so of being pregnant with me (she didn't know she was

pregnant) & I think I read somewhere that one of those shots has been

linked to poor developement of the areas I have problems with.

(Although that could have just been us telling stories to one

another. We like to make up cockamany reasons why things happen. It

was probably us making things up so no one take my word on that.)

After posting, I went to my insurance website & found listings for

Otologists. I had no idea there were such things, just ENT docs. An

ENT doc took out my tonsils so I thought they were supposed to do all

the surgeries. I'm going to try one of them. Unfortunately the

diagnosing ENT is also registered as an Otologist & in the same

office. I hope he doesn't recognize me or the one I see refers me

back to him. So I've got to call to make the appointment. Thanks

for all the recommendations!