Re: New...have problems and questions

[Guest guest]

Hi ,

My experience is similiar, but not quite as bad. When my doctor took

the CT Scan he said my disease was extensive, he planned on doing a

tympanoplasty/masoidectomy but thought he might end up doing a

radical mastoidectomy. I stayed in the hospital overnight and the

next morning my doctor came in to see me, I was pretty high on

morphine and didn't get to ask the questions I wanted, I do know that

he did a tympanoplasty and reconstruction, I think he said he didn't

have to do a mastoidectomy. I haven't seen him since that morning

after surgery Oct 17th, I go back this friday, I believe to have the

stitches and packing removed and I have a bunch of questions ready to

ask him.

My ear pain has ceased though. Every now and then I get sharp

stabbing pains, I think that is normal in the healing process, even

months after. The top part of my ear is still very numb and sore,

this is normal too, I have also read that the numbness may never

completely go away but it isn't bothersome to most people. I still

have taste disturbance, I can't taste things very much, but that

should go away in time. If I sleep on my good ear I can't hear

anything either, but I still have the packing in, I can hold

headphones to that ear with the sound full blast and hear sounds. If

you want to speak with the surgeon I would call and insist that you

do, I would get a copy of your medical records also, if they aren't

answering the questions you want. Maybe you can call and move your

appointment up from the 13th. Tell them your concerns and maybe they

will move up your appointment or answer some of your questions. I

really hate it that I didnt' get talk to my doctor since the surgery,

but he is going to get slammed with a ton of questions I have written

down, because I have alot of unanswered questions myself. As far as

a second surgery goes to improve your hearing, I don't really know,

ask your doctor about that hopefully they will be able to give you

some answers. It does takes months for the swelling and healing

process to take place, maybe after all the swelling goes down your

hearing will improve. Let us know what you have found out.

G.

> Hi all,

>

> I had a cholesteatoma (tympanoplasty w/ mastoid) removed and a

> complete ear drum replacement on Aug 26th. It was done by Dr.

> Roberson of The California Ear Institute at Stanford Hospital. Both

> the doctor and the Institute are supposed to be highly reputable.

> Since it's been a negative experience, I wanted to relate some of

my

> problems, ask some questions and get prepared for my next doctors

> visit on Nov 13th.

>

> The problems:

> - Poor pre and post-op communication (I believed that I would have

> some partial hearing loss for 2-3 days and be back at work in two

> days)

> - Loss of taste in the right side of my mouth

> - Loss of feeling in the top half of my ear; it consistently feels

> like a novacane shot that is just starting to wear off

> - A good amount of pain even now two months+ later; I get some

> shooting pains and it consistently feels very swollen

> - Hearing loss. My hearing has started returning but only to " 30-

40%

> of base " . My ear was too swollen a month and a half after the

> procedure for them to determine anything definitive about my

hearing

> loss. If I sleep on my good ear, I can't hear a thing.

>

> Questions:

> - What's the longest any of you have gone with a loss of

> taste/metallic taste and had it returnto normal?

> - I'm still not sure of the exact procedure they did and what

> happened. Dr. Roberson and the Institute are supposed to be

> outstanding but the associate I keep getting assigned to tells me

> very little- should I ask for a copy of my medical records?

> - I still have not met with the surgeon himself since the

procedure.

> Is this normal even for large places that do hundreds of such

> procedures or can I rightfully and assertively demand to meet with

> him personally?

> - If hearing doesn't return to close to normal after a mild

> cholesteatoma, is a second surgery usually necessary? Should I

start

> asking the surgeon now?

> - When do they do/not do a CT scan before operating on a

> cholesteatoma? In my case the cholesteatoma was supposedly mild

though

> when they went in they found that they had to replace the whole ear

> drum rather than do a partial graft.

>

> Thanks. Sorry to be so long.

>

>

[Guest guest]

Hi

Even after the surgery there can still be a bit of a hill to climb before you fully recover. Sorry to say that there aren't absolute guarantees regarding nerve damage or hearing restoration. The surgery is dedicated to removing the growth which would eventually lead to far more serious (and life-threatening) problems: all the other considerations are secondary. No doubt you were required to sign a consent form acknowledging the risks of surgery.

Having said that, it's extremely rare that anyone suffers permanent damage as a result of the surgery. My experience was that the loss of taste lasted 6 months post-surgery and then came back completely.The numb ear is still fairly numb a year on - and I imagine it'll remain that way. Surgery is a big inconvenience for the poor old ear and it may take months for the internal wound to heal fully, meanwhile you can expect the ear to be reminding you of the tough time it's been through - ongoing, severe pain would be another matter however.

If the surgeon has replaced your eardrum, then it sounds as if you may have had a canal wall up procedure. It would mean that he expects your hearing to improve or that he plans to reconstruct any missing or damaged ossicles some time in the future (if it hasn't already been done). The 'second look' it may incorporate reconstruction plus a check for any recurrence of the c-toma. As a rule most people seem to get back to the same level of hearing that they had before the operation.

Extracting information from doctors can be a trying business. Persistence might not do any harm (a squeaky wheel gets oiled, they say). I hope you can manage to gets some response to your concerns on the 13th.

Good Luck

Phil

[Guest guest]

i have had that metallic taste in my mouth since my first surgery back in

1994 and have still yet to get rid of it. some people get rid of it but my

doctors says that it has to do with nerve damage. you should always keep a

copy of your medical records and update them every year.

tammy

[Guest guest]

finitob wrote:

> Hi all,

>

> I had a cholesteatoma (tympanoplasty w/ mastoid) removed and a

> complete ear drum replacement on Aug 26th. It was done by Dr.

> Roberson of The California Ear Institute at Stanford Hospital. Both

> the doctor and the Institute are supposed to be highly reputable.

> Since it's been a negative experience, I wanted to relate some of my

> problems, ask some questions and get prepared for my next doctors

> visit on Nov 13th.

>

> The problems:

> - Poor pre and post-op communication (I believed that I would have

> some partial hearing loss for 2-3 days and be back at work in two

> days)

> - Loss of taste in the right side of my mouth

> - Loss of feeling in the top half of my ear; it consistently feels

> like a novacane shot that is just starting to wear off

> - A good amount of pain even now two months+ later; I get some

> shooting pains and it consistently feels very swollen

> - Hearing loss. My hearing has started returning but only to " 30-40%

> of base " . My ear was too swollen a month and a half after the

> procedure for them to determine anything definitive about my hearing

> loss. If I sleep on my good ear, I can't hear a thing.

>

> Questions:

> - What's the longest any of you have gone with a loss of

> taste/metallic taste and had it returnto normal?

> - I'm still not sure of the exact procedure they did and what

> happened. Dr. Roberson and the Institute are supposed to be

> outstanding but the associate I keep getting assigned to tells me

> very little- should I ask for a copy of my medical records?

> - I still have not met with the surgeon himself since the procedure.

> Is this normal even for large places that do hundreds of such

> procedures or can I rightfully and assertively demand to meet with

> him personally?

> - If hearing doesn't return to close to normal after a mild

> cholesteatoma, is a second surgery usually necessary? Should I start

> asking the surgeon now?

> - When do they do/not do a CT scan before operating on a

> cholesteatoma? In my case the cholesteatoma was supposedly mild though

> when they went in they found that they had to replace the whole ear

> drum rather than do a partial graft.

>

> Thanks. Sorry to be so long.

>

>

>

>

>

>

[Guest guest]

hey tammy, have you tried any sort of treatment to repair the nerves? I was just wondering, cause nerves aren't really the domain of Ear Nose and Throat. It might be worth it to look around and see if there is anything you could do. Perhaps contacting a neurologist? In the meantime, vitamin B is supposed to be good for nerves, i think. and perhaps some kinds of steroids could help. I was just on prednisone for an ear infection and noticed that it is prescribed for multiple sclerosis, which involves the degenration of nerves. so who knows? good luck.

jsatssat@... wrote:

i have had that metallic taste in my mouth since my first surgery back in 1994 and have still yet to get rid of it. some people get rid of it but my doctors says that it has to do with nerve damage. you should always keep a copy of your medical records and update them every year.tammy

[Guest guest]

At 02:51 PM 11/04/2002 -0500, you wrote:

>i have had that metallic taste in my mouth since my first surgery back in

>1994 and have still yet to get rid of it. some people get rid of it but my

>doctors says that it has to do with nerve damage. you should always keep a

>copy of your medical records and update them every year.

>tammy

>

>---

Me, too. My nerve isn't just damaged, it's gone. I've had this awful

taste in my mouth before my first surgery and didn't have a clue what it

might be. My dentist said that it wasn't my teeth or gums, so I just

figured...well, I didn't know *what* to think. I now know that it's a

good indicator of c-toma. I used to drink wine, diet cola, iced tea with

lemon, I used to like mustard, now they all taste terrible. My surgeon

told me that the other side of my mouth would " take over " and I'd gain some

of my sense of taste back, but I haven't. He also said that the metallic

taste would go away, but it hasn't either. This has been since my first

surgery, years ago. I'm really disappointed about this--almost as bad as

loss of hearing. I'm also one of those who puts the " bad " ear up so I

don't hear my partner snoring at night. I guess the taste sensation loss

is worse for me because I used to like to cook really intricate meals and

take time to match a nice wine with them--now it doesn't matter that much

to me and I can't compare wines if my life depended on it.

Diane Brunet

http://www.inetworld.net/dlb2 meet my family and me

http://.www.sassysuds.com handcrafted specialty soaps, and more!

[Guest guest]

I had the metallic taste as well after my first surgery. My doctor said it

was because my nerve had been damaged and if it really bothered me he would

sever the taste nerve in my ear and the bad taste would go away to no taste

till the other side took over. I choose not to have him cut it. The

metallic taste come and goes. Usually it's gone but still sneaks in now and

again. I'll just live with it for now.

Jane

>

>At 02:51 PM 11/04/2002 -0500, you wrote:

> >i have had that metallic taste in my mouth since my first surgery back in

> >1994 and have still yet to get rid of it. some people get rid of it but

>my

> >doctors says that it has to do with nerve damage. you should always keep

>a

> >copy of your medical records and update them every year.

> >tammy

> >

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[Guest guest]

richard

i have asked my ent about this but they just say that becouse of the number

of surgerys i have had that some nerve damage it to be expected. so i have

never gone any further with that and have learned to deal with this over the

last couple years. i dont want to do anything extra and have it destroyed

with the next surgery i am now looking at another and was just told that i

have another c-toma in my right ear even though i just had surgery in aug