my story

[Guest guest]

Hi,

I'm living in Northern California in Redding. I did go to the doctor

and he believes me but I would be interested in seeing somebody that

acctually knows more about Lymes. Sorry to everybody that I did not

reply back to previous messages. It has just been kind of a mind

meld with all of the info I have been reading online. Scary really.

For a lot of years I have been able to ignore my condition or take a

pill to aleviate the symptoms. I'm past that now and have to admit

to myself I am living with this for life. Thanks to everybody for

the supportive words.

Elsa

> Elsa,

> Yes, you can get tests through various labs, one is Igenex. Go to

a Lyme

> Literate doctor in your area. You can email this list and let us

know where

> you are and we'll try to help find a doc by you. God bless,

Colleen N.

[Guest guest]

Elaine,

I read your plea and wished I had an answer for you. I have shut my

digestive system down on purpose before doing an extended fast. When it

started back up after the fast my body has always done it naturally as far

as I remember.

I'm glad that the yoga positions worked for you. I am interested in what

you are doing.

Karma

> Well I haven't posted in a while. I'm trying to convience myself

> that I am not a failure. Last time I posted I was in major shut down

> mode. 3 weeks ago my ovary torsed again. 2 days later--still torsing

> I went to the hospital. The ovary died 2 days before. It was 6 "

> long and 4 " thick. I'm not heavy so this had to happen over night.--

> They took a picture that was pretty amazing. The dr was amazed that

> I wasn't septic. I'm sure the reason I wasn't is because I have done

> so much cleansing. The day my ovary torsed my stomach shut down. My

> natural dr put me on enzymes to flush the bowel. They stayed in my

> stomach 4 hours and since they had protease in them it really burned

> my stomach. I don't think he realized when I said my digestive tract

> shut down --I meant it shut down not that I was constipated. I knew

> this because the 2 glasses of water I drink first thing in the

> morning came back up along with all the herbs I took--4 hours later.

> I think water stays in the stomach for 20 min. I also did an enema

> (1/2 gal) and nothing came out. I did another that night--nothing.

> The next morning--nothing. WOW 1 1/2 gal in -- nothing out. 2 days

> after the surgery to deliver the ovary!! I was out of the hospital.

> That is when I wrote my plea for help with my stomach. after throwing

> up for 18 hours every 45 min. I was back in the hospital. My bowels

> had no sounds and my kidneys were shutting down. My throat and

> stomach were burned. The drs had no idea what was going on. After

> rehydrating for 2 days(iv) I finally dragged myself out of bed and

> did the yoga abdominal movements. Thank GOD for that or there would

> have been more surgery and tests. After a few minutes of doing the

> ab movements there was a small sound. I did more--no small feat

> after abdominal surgery. What amazes me is that the GI and GYN knew I

> was doing the yoga--but didn't even ask me what I did. They had no

> idea what to do--and when I did something that worked they didn't

> even want to know what it was. OH well spilt milk!! So now I am

> recovering. While I feel like I failed with the ovary I know that I

> would be dead--2 times--if I hadn't done the cleansing that I have.

> Now I have to start all over. I can only imagine what my liver has

> been thru with all the drugs. I think what started the ovarian

> tortion was grains--I hadn't had any in some time and then I ate

> some. Maybe I'm just looking for reasons and it was going to happen

> anyway--that is what the drs say.

> Alive and getting better. Now I'm faced with surgical menopause.

> Anyone out there dealing with that? So far I have no sysmptoms--

> although the dr said I would. I'm sure again my diet and cleansing

> are helping me with that, but I do worry about osteoperosis--that

> fear factor is at work. ;-( I'm doing Schulzes female formula for

> menopause, calcium, borage,--etc. I will list everything if there is

> interest. I'm hoping that someone has info for me!!

> Elaine

[Guest guest]

Wow! I am really amazed that you took control of your body with so much success.

Go girl!

I have a story much like yours, I have a digestive system that does not work. A

whole box of ex-lax and nothing happens, enema after enema and nothing. I blow

up 10 pounds in three days and keep going if I am not careful. What works for

me? Raw foods, lots, water, and fervent excersise. Fasting and occasionally

cleansing. If I have a blow up day, from the tempting smell of baked goodies, I

Homozone to death. Lifting weights will take care of your concerns for

Osteoporosis. I found this so hard at first and now its been life changing. I

went from 185 pounds and looking in my fifties. To 135 a sleek size 2 and

looking in my low 30's. I feel as good as I look. I home educate four children,

so to incorporate my regime, I get up with the Hubby and see him off to work at

seven. I am dressed and ready for my run, I ran for 10 minutes at the beginning

and now I run 5 miles. I come home and rest by reading the children history

books. Then I plan supper and about 2pm we all head for the YMCA. They do there

thing, while I lift weights and swim laps. Then after supper and when everyone

settles down I go for an hour bike ride. Sometimes the children join me. I have

a bike light and ride on very rural roads.

Blessings,

Bernadette

[Guest guest]

Well, in all that I've read, the more you do to lessen the impact of

menopause before you actually start, the less " symptoms " . Basicly it

is to eat right. No refined foods, eat your vegies, get your

protein, I know there is controversy over soy, but I try to eat soy

that is either tofu or edamame. I think soy powder is too refined.

The herbs and vit. that I'm taking are-- Schulze female formula ( I

was taking the tonic--made my own) One is for PMS the other is for

menopause. Vit E EmergenC, Borage tincture, Sarsaparilla tincture

(both are glandular food) Glutamine (fabulous on the stomach)

Barleans Flax oil, Aloe Vera juice, lecithin, Chickweed (internal

scarring as well as glandular), Chromium Picolinate, Cal mag, B12 and

B6. I eat basicly like I'm diabetic. There is a lot of info that

suggests that excess insulin in the system is the root of lots of

problems. No refined sugar, no refined grains, no potatoes, no corn

and I seem to be sensitive to most, if not all, grains. At this

point I'm not experimenting!! So some of the stuff I'm doing is

because of the surgery and to rebuild my intestinal tract--oh yes I'm

doing lactobacillus/bifido support. I've also done some MSM--

although I have a hard time remembering that one. I'm going to make

some of Schulzes Bone Flesh and Cartilage today. I've had it soaking

for 3 days. I've been reading about diet and menopause, and basicly

it is-- stay away from hydogenated fats and make sure what you eat is

as close to its natural state as possible. I like to eat mostly raw,

however I've been eating soup the last few days. I plan on doing a

major cleanse soon, first I need to recover. If the liver is in tip-

top shape, it is able to handle the fluctuations of hormones.

Schulze's basic information says to eat superfood, I eat about 3-4

spoonsful everyday in my morning drink. Something that Dr Weil

suggests is to eat Shitake mushrooms. I love them, so I think I'll

try to incorperate them into my diet more--if only they were less

expensive. Another thing that I keep reading that is important is to

lose excess body fat and exercise, ofcourse that is important for

more than just menopause.

One thing I did that was crazy inbetween hospital visits. I had this

tickle in my throat that made me cough. Well 3 days after abdominal

surgery the last thing you want to do is cough. I used Schulze

digestive formula and it stopped the cough. I now think it was a

sign of dehydration and I should have had water. I ended up taking

about 1/2 bottle. I think that was too much essential oil. Who knows

now, I can't start second guessing. When my digestive tract shut down

nothing got past my stomach. I absorbed nothing--not even water.

everything I drank came right back up---after churning for 30 min.

Hope this helps. I'm 45, so menopause was in the process, surgical

menopause is a bit different---I don't have ovaries to produce even a

little estrogen. I have lots of research ahead of me. I'm currently

reading a book called the Menopause diet. My friend that does Adkins

diet gave it to me. Guess what ---it's high protein!! Everything

else I read says lower your protein. I guess this is where intuition

is supposed to kick in.( i don't really need intuition to tell me

high protein isn't for me) I feel I must be doing something right---

I still have no " symptoms " .

Elaine

> Elaine,

> I read your plea and wished I had an answer for you. I have shut my

> digestive system down on purpose before doing an extended fast.

When it

> started back up after the fast my body has always done it naturally

as far

> as I remember.

>

> I'm glad that the yoga positions worked for you. I am interested

in what

> you are doing.

> Karma

>

>

>

[Guest guest]

Elaine, responses after your comments below.

---- Original Message ----- From: wcr2ew

bowel cleanse Sent: Wednesday, June 12, 2002 6:07 AM

Subject: Re: my story

> ....Well, in all that I've read, the more you do to lessen the impact of

> menopause before you actually start, the less " symptoms " .

Please consider reading " What Your Dr May Not Tell You About Menapause " by Dr

Lee.

And please consider doing some research on Progesterone cream. I use PureGest,

A Natural

Progesterone Lotion. It's the only clean formula I know of and helps me

tremendously. You'll

find info and product at www.kevalahealth.com or call 888-749-8643. If I were

you, knowing

what I know now, I'd be on that product pronto.

> I've also done some MSM--

> although I have a hard time remembering that one.

I have found the MSM to make a helpful difference in balancing my hormones as

well as being

overall healing to the body. Would be very helpful in recovering from surgery.

> I'm 45, so menopause was in the process, surgical menopause is a bit

different---I don't have

> ovaries to produce even a little estrogen.

In my studies I learned I didn't need my ovaries to produce estrogen. We have

plenty of it, naturally occurring in other ways. Even fat cells produce

estrogen, a problem if one is obese as it contributes to estrogen dominance,

which leads to a host of problems. Actually we are lacking progesterone and that

is the problem. Wouldn't hurt to do a Lugol's thyroid patch test too. The

thyroid supports all your other hormone issues.

Best wishes,

Deanna

[Guest guest]

Hi Elaine,

Forgive me if I missed one of your earlier posts, but I have a few

questions:

When did you have the surgery on your female organs?

What kind of abdominal surgery did you have?

Was this because of the post a few weeks ago about your digestive system

shutting down?

What formula of Schulze did you use for your stomach?

What is " Schulzes Bone Flesh and Cartilage " ?

I hope and see that you are recovering well.

I also was reading very conflicting reports and had to go back on the

Specific Carbohdyrate Diet which is almost exactly what you are doing now

(except much more strict). I have much fewer symptoms. Also, I have been

experimenting and finding that the grains were giving me diarrhea, bad gas,

body odors et. All this time I those symptoms when I stopped eating meat

and dairy, now they only go away when I abstain from grains and such. I can

thank the antibiotic Zithromax for that.

The only thing I can think is carbohydrates are digesting badly and that is

why I have to abstain from them. That theory is what SCD is based on. I

went out to do some errands, and it was hot, which normally bring out

unusual odors, and nothing! Praise the Lord! But I do want to be able to

eat all the things from God's green Earth one day.

Sorry this is so long!

Keep up the good work.

God bless you,

KJ

[Guest guest]

> When did you have the surgery on your female organs?

I had the surgery 4 weeks ago this Thursday

> What kind of abdominal surgery did you have?

I had a condition called ovarian tortion. The ovary twists. It

started doing this in August of last year and I had a tortion about

every 4 weeks. There was no pattern to it. No specific time of the

cycle or did it have anything to do with what I ate. The ovary was 6 "

long and 4 " thick when they removed it.

> Was this because of the post a few weeks ago about your digestive

system shutting down?

Actually my system shut down the Tuesday before the surgery when the

ovary torsed. I knew this because the water I drink every morning

came back up 4 hours later. I also did several 1/2 gal. enemas of

which nothing came out!! Not a drop. I was still throwing up about

every 2-3 hours on Thursday when I went to the hospital. I posted

the next Saturday when I got home from the hospital. The Wednesday

before the surgery to remove the ovary, my natural dr put me on some

enzymes to flush my bowels. Instead it just ate my stomach. I threw

them up 3-4 hours later. 2 days after I got home from the surgery

something happened and I started throwing up again. After throwing up

for 18 hours--just about every 30-45 min I was back in the hospital.

This time not only my bowels had shut down my kidneys were on the

way. The drs were stumped, they had no idea what was going on. They

thought maybe blocked bowel, but that has some kind of high pitched

bowel sound and a stairstep bowel in the x-ray. I had no sound.

After 2 days in the hospital, the drs agreed that another surgery was

needed to find out what was going on and /or a CAT scan. I urged them

to wait one more day. I spent the rest of that day doing a simple

yoga exercise to stimulate the bowels. I also had a friend do some

reflexology on my bowel points. Another thing I did--that would have

sent my drs crazy--was Schulze intestinal 3. I was not supposed to

be swallowing anything. I put drops of it under my tongue. The

formula 3 is meant for children. It is in a fig syrup and I don't

know if this is really true, but it was quite tastey. Well I had

bowel sounds that night and good bowel sounds the next day. The

hospial gave me chicken and rice to break my fast!!! needless to say

I ate a few of the greens that came with the meal and my

husband " kept " down the rest. LOL I came home to superfood and

juices. I'm now eating solid food, but had a reaction to grains. I

won't be trying those again for awhile. The book Digestive wellness

says that if you spend 6 months repairing the digestive tract,

possibly you won't have problems with grains. I don't know, I've

read a lot about grains being the culprit of many diseases. Is this

because our guts have been damaged from antibiotics and anti-

inflamatory drugs or is it because our system is just not built to

digest grains.

> What formula of Schulze did you use for your stomach?

I used digestive formula. It is a very nice peppermint and ginger.

It has essential oil of peppermint in it and I wondered if I used too

much. I had this little tickle that caused me to cough. After

abdominal surgery, coughing is not fun. The digestive formula shut

the cough down. I wonder now if the cough was a sign of dehydration.

I don't know!!

> What is " Schulzes Bone Flesh and Cartilage " ?

It is a fabulous (not taste) tea made from Oak bark, mullein root,

wormwood, comfrey root, gravel root, lobelia, marshmallow root,

scullcap, and Black walnut. I can give you the recipe if you want.

You can find some intersting info about Schulze by doing a web search

on Sam Biser. I have some old interviews that Sam Biser did with

Schulze. Biser also interviews many other interesting

alternative practitioners. Dr. has a similar formula

called BFC except he doesn't use comfrey root. I can't remember off

hand what he uses instead. Comfrey is on of those highly effective

herbs that someone used and got liver damage so it is now " suspect " .

You can only imagine what Schulze has to say about that!!!

>

> I hope and see that you are recovering well.

I am recovering well, Thank you. I'm sure the only reason I lived

thru the ovary (it was dead 2 days) and the bowels is because I spent

so much time cleaning my liver. I really believe this. The dr was

amazed the ovary didn't make me septic. I don't really want to think

about what that means, I do know one of the first things that happens

when you get septic is Grand Mal seisure. I'm not even trying to

figure out why my bowels shut down. Drs have nothing to offer, I'm

spending my energy right now trying to decide what to do about all

the conflicting informations about surgical menopause. I lost the

other ovary 12 years ago to the same thing. Why me??? It is very

rare.

>

> I looked into the SCD a bit. I don't know. I read a book that

drove me crazy " The Neanderthin Diet " The only thing in the book

that made sense was that arthritis and other joint degenerating

disease didn't show up in history until people started farming

grains. The rest of the book was about why we should only eat meat.

My friend that does adkins diet wanted me to read it. You can find

lit. out there to support what ever you want. She also gave me a book

called " The Menopause Diet " It is very technical and my brain won't

assimilate much right now, but the gist is 45% protein. HMMM Maybe

for some, but if I ate that much protein I would have to take 10

formula 1 every night.!! I think diet is very individual.

Unfortunately for me oatmeal chocolate chip cookies and cheese

enchiladas are a thing of the past. There is another book I read--

drove me crazy also, but I do agree with their eating. " God's Way "

They are big juicers and mostly raw. That seems to work for me.

Mostly raw I do well. I guess I need to invest in a few

raw " cookbooks " ---was that an oxymoron. LOL

So hopefully I answered all the questions. If not I'll try not to be

so wordy with the next ones.

There is lots of info on Schulze--other than his news letters. I

lucked out and have a friend that has books and books on all his

formula and ideas.

Elaine

[Guest guest]

My story

> My ENT said it is beyond his capabilities and referred me to a Neuro

> Otology specialist in his group. A MRI is scheduled for next

> month. They believe this C'toma has been around for a long time.

It sure sounds like it. What part of the world do you live in, is this

" local university medical school " a good one? Best wishes to you, get the

best neuro you can find.

--

Cheers,

--Jeff

[Guest guest]

Hi Tom

Welcome to the group.

Neurotologist is an ENT who is further specialized in this type of

surgery... they don't do regular ENT work... so you are in really

specialized hands with a neurotologist.

I wonder if your injury during childhood was actually part of the cause of

your c-toma. If you had a ruptured ear drum at the time, it could have been

the way it started.

I had a long standing hearing loss that I was curious to see if I could have

fixed and that is how my c-toma was discovered. If I hadn't been curious, I

might be in the same situation you are in with the extent of disease you

describe, as this growth is silent in some people until it's damage is quite

widespread.

Keep us informed of your progress.

Lynn

My story

> Hi, I have been lurking and reading the mail for the past several

> weeks. Thanks to all of you, I have gained a lot of insight into

> the disease as you shared your experiences. Now it is time for me to

> share with you and seek your support and advice.

>

> I am a 66 yo male. I was diagnosed with C'toma about 6 weeks

> ago.

> I went to my PCP for drainage from my left ear. He treated the

> infection, but, did not like `the looks of it'. I was

> referred to

> an ENT who immediately diagnosed the C'toma.

>

> A little background. I have not heard in this ear since early

> childhood. The loss of hearing occurred coincidentally with a blow

> to left side of my head; sandlot foot ball, no equipment; that

> resulted in a concussion and several days of memory loss. To this

> day, I recall vividly attempting to tackle a larger kid and waking

> up, in bed, at home several days later. When the hearing loss was

> discovered it was termed nerve deafness due to the hit on the ear.

> The reason I mention this will become apparent later.

>

> My ENT ordered a CT scan. Yesterday, I got the results. The

> C'toma

> is wide spread. The Sigmoid sinus is full of it. The Mastoid sinus

> is full of it and the thin plate between the mastoid and brain is

> eroded and a small bit of C'toma extends into the skull. The

> right

> ear is normal, so it was easy for a layperson, like myself, to see

> the differences between the two sides.

>

> My ENT said it is beyond his capabilities and referred me to a Neuro

> Otology specialist in his group. A MRI is scheduled for next

> month. They believe this C'toma has been around for a long time.

>

> Not having the loss of hearing to tip me that something was going

> wrong, I had no early warning system, that most people have. to

> suggest C'toma.

>

> The surgery will be a little tricky due to the blood draining from

> the brain via the Sigmoid and Jugular and with the C'toma inside

> the

> skull.

>

> Just wondering if anyone else has similar experience. Also, I am a

> little unsure of the term Neuro Otology. I assume it to be someone

> trained in both Neuro surgery and ear surgery. I will find out.

>

> I, also, have an appointment at a local university medical school

> clinic after the MRI. I will be seeking a second opinion as to the

> best qualified surgeon.

>

> Thanks to all

> tom

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Lynn for giving me the definition of what a

neurotologist is. I'm in a confusing position right

now. I got a second opinion from a doctor affliated

with Stanford and he reommended I have the surgery

with a specialist, someone who only does ear surgery.

Right now I'm in an HMO plan so if I go with this

second doctor I have to wait till December to change

my plan to PPO. Do you think it would be worth it to

go with this second doctor?

__________________________________________________

[Guest guest]

Macias wrote:

> Thanks Lynn for giving me the definition of what a

> neurotologist is. I'm in a confusing position right

> now. I got a second opinion from a doctor affliated

> with Stanford and he reommended I have the surgery

> with a specialist, someone who only does ear surgery.

> Right now I'm in an HMO plan so if I go with this

> second doctor I have to wait till December to change

> my plan to PPO. Do you think it would be worth it to

> go with this second doctor?

>

>

>

> __________________________________________________

>

[Guest guest]

-

Hi! Dr. Roberson is the doctor I'm to see in October.

Dr. Perkins is the doctor who gave me the second

opinion but he wants me to meet Dr.Roberson. I'm

concerened that I'm waiting too long for the surgery

but my last surgery I waited four months. Do you like

how the California Ear Institute has treated your son?

I know if I switch to a PPO I'm going to have to pay

for some of the surgery so I want to make sure it's

worth it!

__________________________________________________

[Guest guest]

, Honestly,

He is my hero--simply said. I would trust him with anything.

I so strongly recommend that you at least talk with him. Zach has

bilateral cholesteatomas so he had to wait over a year until until he was

finished with the left ear until he could start with the right. It

has worked out well for him.

Everyone at the institute is incredibly helpful. When I call

for anything they are always there for me and Zach. I could go on

but if you have any questions at all please email me and I would be happy

to talk with you about it. Good luck and definitely talk with Dr.

Roberson--he was on Good Morning America because he placed coclear implants

in a family of three-a husband, wife and their year and a half old baby

who had never heard before--it was a great story.

Good luck and let me know how it goes!

One more thing... my insurance is based on a recommendation from my

primay care physician--since he has give me the recommendation we aren't

charged a dime. I know with the PPO you might have to pay 10 or 20

% but they may reduce your price--if it is a negotiated price. Anyway

I am pretty sure you will think it is worth it!

Macias wrote:

-

Hi! Dr. Roberson is the doctor I'm to see in October.

Dr. Perkins is the doctor who gave me the second

opinion but he wants me to meet Dr.Roberson. I'm

concerened that I'm waiting too long for the surgery

but my last surgery I waited four months. Do you like

how the California Ear Institute has treated your son?

I know if I switch to a PPO I'm going to have to pay

for some of the surgery so I want to make sure it's

worth it!

__________________________________________________

[Guest guest]

Hi -

Thanks for the info. I'm going to ask my primary

physician if she can recommend Dr. Roberson. I don't

believe he's on the HMO list. Anyway, it sounds like

he is the person I should consider.

What do you mean by negotiating with the PPO about the

price of the surgery or how much I can pay?

__________________________________________________

[Guest guest]

Hi,

> Right now I'm in an HMO plan so if I go with this

> second doctor I have to wait till December to change

> my plan to PPO. Do you think it would be worth it to

> go with this second doctor?

That is a tricky question. If you go with the neurotologist, does that mean

you have to wait until December? Personally, I would want the most

qualified person. I lucked out with my ENT. I was referred to him because

the doctors in my city thought I had " otosclerosis " , and the treatment for

that is only available in southern Ontario. I was having a " stapedotomy "

when my c-toma was found to be the root of my problems.... Anyway, I was

referred to an Otolaryngologist who happens to be a Neurotologist. I was

very fortunate because he is very experienced, and when he did the

mastoidectomy, I had a problem with my facial nerve, and because he knew

what he was doing, it was not damaged. That might be the difference between

an ENT who is familiar with the damage c-toma does, and an ENT who doesn't

see that too often... if ever!

The problem you might have is waiting till December. It is not good to wait

too long with cholesteatoma if you don't have to. It all depends on the

extent of the growth that you have.

Lynn

Re: My story

> Thanks Lynn for giving me the definition of what a

> neurotologist is. I'm in a confusing position right

> now. I got a second opinion from a doctor affliated

> with Stanford and he reommended I have the surgery

> with a specialist, someone who only does ear surgery.

> Right now I'm in an HMO plan so if I go with this

> second doctor I have to wait till December to change

> my plan to PPO. Do you think it would be worth it to

> go with this second doctor?

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Lynn!

Neither doctor seemed too concerned that I wasn't

rushing to the hospital! The first said he'd do

whatever I wanted and the second said he could wait

until December when my insurance switches over. I had

surgery two years ago and the first time I had

cholesteatoma I had a lot of drainage which was foul

smelling. Yeah, ick. This time I have some drainage

but no smell and or pain. It's almost as if I don't

actually have it.

__________________________________________________

[Guest guest]

Hi ,

It should be very simple for your primary to recommend him--I hope

that works for you but I imagine it depends on the type of insurance.

What happens with my insurance is my insurance is billed a certain amount

from the institute. The insurance company ends up paying him something

called a 'network negotiated charge' which is a great deal less than their

price.

They get payed much less from someone with my type of insurance--it

makes me feel bad about it because I believe he deserves every penny he

charges but that is the way the insurance game is played. I am not

sure if there is any network negotiated charge when it comes to PPOs though

so both you and the insurance company may end up paying the full price.

You have nothing to do with the negotiated price--this is strictly worked

out between you insurance company and the hospital you go to.

I hope this isn't too confusing!

Good luck,

karen

Macias wrote:

Hi -

Thanks for the info. I'm going to ask my primary

physician if she can recommend Dr. Roberson. I don't

believe he's on the HMO list. Anyway, it sounds like

he is the person I should consider.

What do you mean by negotiating with the PPO about the

price of the surgery or how much I can pay?

__________________________________________________

[Guest guest]

Hi -

It is confusing but we are chatting about insurance!

Right now I have HMO coverage so I'm thinking my

primary is probably not able to recommend Dr.

Roberson. I'm planning to pay for my visits out of

pocket until I can switch to PPO. I think the bottom

end of the scale is $55 for an office visit. If they

need to clean my ears, I'll just go to the doctor I'm

seeing now through my HMO. Hopefully, no one will be

offended but it is my health and my pocketbook!!!!

__________________________________________________

[Guest guest]

I have to say, that I consider myself extremely lucky.... I NEVER had any

drainage, before or after (except a little bleeding post op). As a matter

of fact, when I think back, my doctor (who I thought a little wierd at the

time) was so amazed when he took out the packing after almost one month

post-mastoidectomy, that the packing was clean and dry and odorless.... he

kept telling me to sniff it... I declined, but I guess, not knowing that

most people seem to have this awful drainage... Anyway, now I know why he

was so impressed that my packing didn't smell bad... or even look bad... and

that was after a month of living in my ear.... So I have been truly

fortunate. If my ear didn't feel so weird now... I'd almost think this has

all been a dream.

Lynn

Re: My story

> Hi Lynn!

>

> Neither doctor seemed too concerned that I wasn't

> rushing to the hospital! The first said he'd do

> whatever I wanted and the second said he could wait

> until December when my insurance switches over. I had

> surgery two years ago and the first time I had

> cholesteatoma I had a lot of drainage which was foul

> smelling. Yeah, ick. This time I have some drainage

> but no smell and or pain. It's almost as if I don't

> actually have it.

>

>

>

> __________________________________________________

>

[Guest guest]

I can't imagine anyone being offended by that! Good luck!

karen

Macias wrote:

Hi -

It is confusing but we are chatting about insurance!

Right now I have HMO coverage so I'm thinking my

primary is probably not able to recommend Dr.

Roberson. I'm planning to pay for my visits out of

pocket until I can switch to PPO. I think the bottom

end of the scale is $55 for an office visit. If they

need to clean my ears, I'll just go to the doctor I'm

seeing now through my HMO. Hopefully, no one will be

offended but it is my health and my pocketbook!!!!

__________________________________________________

[Guest guest]

Hi ,

One thing my husbands doctor at Oregon Health Sciences Univerity told me to look at when searching for a c-toma doc is that he is a fellow, meaning he has spent at least one year studying, in our situations, the ear only and only does surgeries on the ear. I hope that made sense.

Michele

Macias wrote:

Hi Lynn!Neither doctor seemed too concerned that I wasn'trushing to the hospital! The first said he'd dowhatever I wanted and the second said he could waituntil December when my insurance switches over. I hadsurgery two years ago and the first time I hadcholesteatoma I had a lot of drainage which was foulsmelling. Yeah, ick. This time I have some drainagebut no smell and or pain. It's almost as if I don'tactually have it. __________________________________________________

[Guest guest]

You know I to was wondering the samething. I have a daughter that

has been dealing with 3 or 4 ear infections a year and she is always

itching her ear and complaining of draining. I have been reading

alot of stories that talk of parents and their child having a

cholesteatoma. Good question!

Sue

> I am a 41 year old male and I only discovered the condition I had

as

> a little boy when my own son was diagnosed with the same condition.

>

> I had terrible ear problems up until age six, when I was diagnosed

by

> an ear specialist. From about age 4 until I was diagnosed, I was

at

> the hospital on an almost weekly visit to have my ear lanced.

>

> I had two surgeries between the ages of 6 and 8, and a third

surgery,

> a radical mastoidectomy, when I was eight, which lost me my

hearing

> in my left ear.

>

> This was back in the late sixties and early seventies, and my

first

> surgery required an extesive hospital stay.

>

> I had at least two more operations, the last being when I was 21.

>

> It has many years since I have had surgery, and the infections

come

> and go. At least once a year my ear requires a good cleaning, but

I

> have had no serious complications for years.

>

> I do have a non stop ringing in my deaf ear, but I have lived with

it

> for so long I hardly notice it (although the tones from hearing

tests

> make it worst).

>

> I wonder if my cholesteatoma is genetic, as my son has one. I am

> grateful his was discovered before it caused him any pain.

[Guest guest]

Usprich,

I had c-toma as a child (diagnosed around age 8, last surgery at age

18), and my daughter (age 4) is having surgery tomorrow to have a

congenital c-toma removed. While every doctor I've spoken to about it

says there is no genetic link, it seems reasonable to me that the shape

and functioning of the middle ear, esp. the eustacian tubes, might

predispose one to c-toma.

In my case and my daughter's case, we both had the congenital form of

c-toma, rather than the acquired, so that may or may not be true for us

(congenital c-toma is caused by a " misplaced " skin cell inside the inner

ear, which starts to grow; acquired c-toma is caused by repeated ear

infections and/or poor eustacian function, which causes the eardrum to

pull back into the middle ear and creates a pocket of skin, which then

grows into c-toma).

I'd be curious if anyone has heard anything more/different about genetic

links for c-toma.

-Jeff.

My story

I am a 41 year old male and I only discovered the condition I had as

a little boy when my own son was diagnosed with the same condition.

I had terrible ear problems up until age six, when I was diagnosed by

an ear specialist. From about age 4 until I was diagnosed, I was at

the hospital on an almost weekly visit to have my ear lanced.

I had two surgeries between the ages of 6 and 8, and a third surgery,

a radical mastoidectomy, when I was eight, which lost me my hearing

in my left ear.

This was back in the late sixties and early seventies, and my first

surgery required an extesive hospital stay.

I had at least two more operations, the last being when I was 21.

It has many years since I have had surgery, and the infections come

and go. At least once a year my ear requires a good cleaning, but I

have had no serious complications for years.

I do have a non stop ringing in my deaf ear, but I have lived with it

for so long I hardly notice it (although the tones from hearing tests

make it worst).

I wonder if my cholesteatoma is genetic, as my son has one. I am

grateful his was discovered before it caused him any pain.

[Guest guest]

Hi Jeff

I agree with you about ETD and retraction pockets being the chief mechanism behind acquired c-toma. There is also another factor involved where cellular changes cause dead skin cells to fail to migrate outwards from the middle ear. Migration is a slow business but without it skin cells accumulate and cause c-toma. Non-migration is more of a probable influence in cases where c-toma has spread well beyond the original retraction pocket and where c-toma recurs in an open cavity ear with no other disease or eardrum present. The underlying cellular causes of non-migratory skin aren't known: they're linked to long-term ear-disease, occasionally head trauma and there may even be some room for a genetic link.

My surgeon has covered this non-migration aspect with me because I have an extreme case of it. Though I do have non-working Eustachian tubes and a history of ear disease, a middle ear ctoma initially appeared in an ear where there never was an eardrum. I also have bilateral canal c-toma which seems solely connected to cellular changes. The medical opinion is that is that as long there's skin and bone inside my ears there'll always be ctoma.

Phil

[Guest guest]

Hi all

I am unsure about the genetic links, I am the only

person in my family who has had Ctoma. I also had the

congenital type. I never had any ear infections as a

child, my brother was actually the one who always had

ear problems and he doesnt have CToma. I would be

curious though that if there is some kind of genetic

link that I may pass it on to my future children. I

guess all I can do is keep an eye out when I do have

kids someday and pay attention if they have repeated

ear infections, or if they all of a sudden lose their

hearing (as I did)

The genetic factor does seem interesting to

research...

Alyssa

--- Jeff <jlcarter@...> wrote:

> Usprich,

>

> I had c-toma as a child (diagnosed around age 8,

> last surgery at age

> 18), and my daughter (age 4) is having surgery

> tomorrow to have a

> congenital c-toma removed. While every doctor I've

> spoken to about it

> says there is no genetic link, it seems reasonable

> to me that the shape

> and functioning of the middle ear, esp. the

> eustacian tubes, might

> predispose one to c-toma.

>

> In my case and my daughter's case, we both had the

> congenital form of

> c-toma, rather than the acquired, so that may or may

> not be true for us

> (congenital c-toma is caused by a " misplaced " skin

> cell inside the inner

> ear, which starts to grow; acquired c-toma is caused

> by repeated ear

> infections and/or poor eustacian function, which

> causes the eardrum to

> pull back into the middle ear and creates a pocket

> of skin, which then

> grows into c-toma).

>

> I'd be curious if anyone has heard anything

> more/different about genetic

> links for c-toma.

>

> -Jeff.

>

>

> My story

>

>

> I am a 41 year old male and I only discovered the

> condition I had as

> a little boy when my own son was diagnosed with the

> same condition.

>

> I had terrible ear problems up until age six, when I

> was diagnosed by

> an ear specialist. From about age 4 until I was

> diagnosed, I was at

> the hospital on an almost weekly visit to have my

> ear lanced.

>

> I had two surgeries between the ages of 6 and 8, and

> a third surgery,

> a radical mastoidectomy, when I was eight, which

> lost me my hearing

> in my left ear.

>

> This was back in the late sixties and early

> seventies, and my first

> surgery required an extesive hospital stay.

>

> I had at least two more operations, the last being

> when I was 21.

>

> It has many years since I have had surgery, and the

> infections come

> and go. At least once a year my ear requires a good

> cleaning, but I

> have had no serious complications for years.

>

> I do have a non stop ringing in my deaf ear, but I

> have lived with it

> for so long I hardly notice it (although the tones

> from hearing tests

> make it worst).

>

> I wonder if my cholesteatoma is genetic, as my son

> has one. I am

> grateful his was discovered before it caused him any

> pain.

>

>

>

>

>

>

>