surgery

[Guest guest]

--- Hi Carole,

FANTASTIC, It is great to read your story. I must say the description

of your op makes me feel very lucky to have had it done by lap

surgery. No come to think about it, it doesn't matter how its done as

long as the end result is a better quality of life.

All the very best

[Guest guest]

Hi Pamona,

First welcome to our group. We do have some members

in So Cali. If you take a look at the database, it

has a lot of info (from those willing to share)

including # of surgeries and where people are from.

At some point in the future, I hope to have some sort

of database of " good " doctors for reference. Also,

checkout the bookmarks section. There are some great

articles.

And finally, feel free to ask any question you have.

I am pretty certain someone will have an answer for

you.

Good luck and keep us posted.

Michele

--- pomona32000 <pomona32000@...> wrote:

> I have had 3 surgeries to remove cholesteatomas. My

> first one a

> prothesis was put in. Now the surgeron says he

> wants to go back in

> through the ear canal to see if my ear is clear

> because he can't see

> through a thickened part of my ear drum. It is

> discouraging.

>

> Has anyone ever had to have so many surgeries. Do

> any of you live in

> So. Calif? Who was your surgeon? My surgeon is Dr.

> Andr

>

>

__________________________________________________

[Guest guest]

I will be having my fourth surgery in a couple of weeks. My first was eight years ago. Afraid I'm way "down under" North West Australia. Good luck Audrey surgery I have had 3 surgeries to remove cholesteatomas. My first one a prothesis was put in. Now the surgeron says he wants to go back in through the ear canal to see if my ear is clear because he can't see through a thickened part of my ear drum. It is discouraging. Has anyone ever had to have so many surgeries. Do any of you live in So. Calif? Who was your surgeon? My surgeon is Dr. Andr

[Guest guest]

Dear , Glad it went ok...remember to rest! Audrey Surgery Hello all, and thank you for all your support. I'm just checking my e-mail before crawling back into bed but I thought I'd give you a quick update.Well, surprise-surprise, my surgery took 5 hours instead of the expected 3 and the cholesteatoma was worse than he expected it would be, worse than it looked on the CT scan. He now thinks I will have additional hearing loss in the affected (right) ear and is going to discuss an additional surgery in about 6 months.I'm not sure of the details, I was anesthesia-fuzzy when last I saw him (my ENT). Right now (the morning after my 3rd op) my pain level is probably 6 - 7 out of 10, with some mild throat pain from the breathing tube, and I'm as dry as a bone (thirsty!!). Take care, and thanks for being out there -

[Guest guest]

So glad you are through it -- we're all wishing you and Lori the best! Rest up and let us know how you are doing when you feel up to it!

Dianne

Audrey Jane <audwizard@...> wrote:

Dear ,

Glad it went ok...remember to rest!

Audrey

Surgery

Hello all, and thank you for all your support. I'm just checking my e-mail before crawling back into bed but I thought I'd give you a quick update.Well, surprise-surprise, my surgery took 5 hours instead of the expected 3 and the cholesteatoma was worse than he expected it would be, worse than it looked on the CT scan. He now thinks I will have additional hearing loss in the affected (right) ear and is going to discuss an additional surgery in about 6 months.I'm not sure of the details, I was anesthesia-fuzzy when last I saw him (my ENT). Right now (the morning after my 3rd op) my pain level is probably 6 - 7 out of 10, with some mild throat pain from the breathing tube, and I'm as dry as a bone (thirsty!!). Take care, and thanks for being out there -

[Guest guest]

She will be in my prayers. Bev.

[Guest guest]

Good luck to Steffi

the Pomwi

Kind Regards,

UK

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[Guest guest]

Surgery

> Hi!

>

> I had a cholesteatoma surgery two years ago and now it looks like it

> may be back. Why so soon and does anyone have a similiar situation?

Same thing happened to me when I was a kid. Actually in my case it was more

like three years. Now, 30 years later, here I am again, same thing in the

other ear.

I don't mean to sound all doom 'n' gloom. Just make sure you do what the doc

tells you, and hope for the best. It just seems like certain people are born

more susceptible to it than others. You & me, and many others here. Welcome

to our little corner of hell, BWAHAHAHAHAHAHA!!!!

--

Cheers,

--Jeff

[Guest guest]

Ooooohhh Jeff, What an evil laugh!!!

C ~ my situation is just a little different from yours. In Feb-01 I was first diagnosed with c-toma and in March-01, I had my first surgery. During that surgery my doctor rebuilt my eardrum. My problem was caused by negative pressure in my ear. When my doctor removed the c-toma and rebuilt the eardrum it didn't eliminate the negative pressure. When I went in for my 3-month check up, my newly rebuilt eardrum had already been pulled in by the negative pressure and attached to the wall behind it and a new pocket was formed - perfect for the growth of a brand new c-toma. I went back in for my second surgery in Aug-01. This second time he didn't find any new c-toma (yea). He rebuilt my hearing bone (it's working great!!) and re-built my eardrum again ~ this time with cartlidge to strengthen it a little and he went ahead and put in a tube to help with the negative pressure.

I agree with Jeff - all we can do is follow our doctors orders, hope for the best and I think it's important to educate yourself all you can. This is a perfect spot for that. We are all learning from others experiences.

Take care and keep in touch with this group, we are all here for you.

Jeff Tindall wrote:

> Hi!>> I had a cholesteatoma surgery two years ago and now it looks like it> may be back. Why so soon and does anyone have a similiar situation?Same thing happened to me when I was a kid. Actually in my case it was morelike three years. Now, 30 years later, here I am again, same thing in theother ear.I don't mean to sound all doom 'n' gloom. Just make sure you do what the doctells you, and hope for the best. It just seems like certain people are bornmore susceptible to it than others. You & me, and many others here. Welcometo our little corner of hell, BWAHAHAHAHAHAHA!!!!--Cheers,--Jeff

[Guest guest]

Hi,

Welcome to the group. Jeff is our group comedian. Just to make you feel a "little" better, my husband has had 4 surgeries in 4 years, 2 each ear. Who know's what the future holds. Multiple surgeries for cholesteatoma are very common.

Michele

Jeff Tindall wrote:

SurgeryWelcometo our little corner of hell, BWAHAHAHAHAHAHA!!!!--Cheers,--Jeff

[Guest guest]

melissa,

My son just had his second surgery on Monday to place his prothesis in and to repair his restructured ear drum. He says he is unable to tell any difference in his hearing right now. How long did it take you to improve? His situation sounds much like yours. Thanks. Audrey

[Guest guest]

Hi!

Thanks for the Jeff and Michele for the message. I just went to the

doctor and yes, I do have it again. I feel like it's my fault since I

started training for a minitri back in March. Maybe if I hadn't started

swimming it wouldn't have come back. Anyway, I'm nervous again. The

fear isn't in the surgery it's in the general anesthesia. My friend

died on the operating table, okay, not because of the anesthesia but

because the doctor cut a vein and he bled to death. He was only 31. The

same age I am now. So, it's a very lonely feeling, just waiting there

for the anesthesia to take place and not having any control. It's so

scary. So that's my fear.

[Guest guest]

Hi ,

Sorry to hear that it has returned, but remember. We are one big family here and we will be there with you in spirit, axiously awaiting your post that everything is alright.

Keep us posted and let us know when everything is to happen.

Michele

cameragirl8 wrote:

Hi!Thanks for the Jeff and Michele for the message. I just went to the doctor and yes, I do have it again. I feel like it's my fault since I started training for a minitri back in March. Maybe if I hadn't started swimming it wouldn't have come back. Anyway, I'm nervous again. The fear isn't in the surgery it's in the general anesthesia. My friend died on the operating table, okay, not because of the anesthesia but because the doctor cut a vein and he bled to death. He was only 31. The same age I am now. So, it's a very lonely feeling, just waiting there for the anesthesia to take place and not having any control. It's so scary. So that's my fear.

[Guest guest]

Hi ,

I am sorry about what happened to your friend. It is understandable that

you are scared. It might be a comfort to know that this surgery has very

little risk of excessive bleeding. That is one good thing about it.

Another plus of this surgery is that it will free you of the c-toma growth

and further damage. Surgical procedures are so much better nowadays, and

the risks are goes down somewhat. If you have a skilled surgeon, you are in

good hands. If you aren't sure about your surgeon, ask around about

him/her. Even ask your surgeon how many times he has done this procedure.

If you aren't comfortable ask for a new surgeon.

Lynn

Re: Surgery

> Hi!

>

> Thanks for the Jeff and Michele for the message. I just went to the

> doctor and yes, I do have it again. I feel like it's my fault since I

> started training for a minitri back in March. Maybe if I hadn't started

> swimming it wouldn't have come back. Anyway, I'm nervous again. The

> fear isn't in the surgery it's in the general anesthesia. My friend

> died on the operating table, okay, not because of the anesthesia but

> because the doctor cut a vein and he bled to death. He was only 31. The

> same age I am now. So, it's a very lonely feeling, just waiting there

> for the anesthesia to take place and not having any control. It's so

> scary. So that's my fear.

>

>

>

>

>

>

[Guest guest]

Hi, I've been trying to remember how fast my hearing improved. It was really pretty soon after the second surgery. By four-weeks post op I could tell a difference, but it was several months before I felt like I was back to normal (whatever that is!! lol).

Tell you're son not to worry, it takes time.

aksmorrison@... wrote:

melissa, My son just had his second surgery on Monday to place his prothesis in and to repair his restructured ear drum. He says he is unable to tell any difference in his hearing right now. How long did it take you to improve? His situation sounds much like yours. Thanks. Audrey

[Guest guest]

Hi , is that 4 weeks post op for a reconstruction, or 4 weeks post c-toma removal?

Lynn

----- Original Message -----

From:

Hi, I've been trying to remember how fast my hearing improved. It was really pretty soon after the second surgery. By four-weeks post op I could tell a difference, but it was several months before I felt like I was back to normal (whatever that is!! lol).

[Guest guest]

Hi Lynn ~ it was 4 weeks after reconstruction that I could tell a difference in my hearing. My reconstruction surgery was the first part of August 2001. This week is my one-year anniversary. I should get my hearing tested again to see how much it has changed. I wonder if my insurance would cover that??? Probably not.

Lynn Witkowski wrote:

Hi , is that 4 weeks post op for a reconstruction, or 4 weeks post c-toma removal?

Lynn

----- Original Message -----

From:

Hi, I've been trying to remember how fast my hearing improved. It was really pretty soon after the second surgery. By four-weeks post op I could tell a difference, but it was several months before I felt like I was back to normal (whatever that is!! lol).

[Guest guest]

Hi ,

I would think your insurance would cover a hearing test, especially if your doc didn't do one after the surgery. It's worth looking into. Michele

wrote:

Hi Lynn ~ it was 4 weeks after reconstruction that I could tell a difference in my hearing. My reconstruction surgery was the first part of August 2001. This week is my one-year anniversary. I should get my hearing tested again to see how much it has changed. I wonder if my insurance would cover that??? Probably not. Lynn Witkowski wrote:

Hi , is that 4 weeks post op for a reconstruction, or 4 weeks post c-toma removal?

Lynn

----- Original Message -----

From:

Hi, I've been trying to remember how fast my hearing improved. It was really pretty soon after the second surgery. By four-weeks post op I could tell a difference, but it was several months before I felt like I was back to normal (whatever that is!! lol).

[Guest guest]

Thanks ,

I am glad it was post reconstruction, and that for you it was a positive outcome in terms of hearing. How is everything else with your ear? I will be seeing my surgeon next spring to plan an ossioplasty, as he wants to wait before attempting reconstruction (my c-toma surgery was in May 2002). I was so happy that he will try, because at first, they didn't think I'd be able to have it done. It will be really nice if it works. There are only a few people here who have had reconstruction done, so it is really nice to talk to someone who has had experience with this.

Lynn

Re: Surgery

Hi Lynn ~ it was 4 weeks after reconstruction that I could tell a difference in my hearing. My reconstruction surgery was the first part of August 2001. This week is my one-year anniversary. I should get my hearing tested again to see how much it has changed. I wonder if my insurance would cover that??? Probably not. Lynn Witkowski wrote:

Hi , is that 4 weeks post op for a reconstruction, or 4 weeks post c-toma removal?

Lynn

----- Original Message -----

From:

Hi, I've been trying to remember how fast my hearing improved. It was really pretty soon after the second surgery. By four-weeks post op I could tell a difference, but it was several months before I felt like I was back to normal (whatever that is!! lol).

[Guest guest]

,

Look up Fitzgerald on this board he has had that done. I my self

went through the heller and am now worse..but my surgeon didn't do it

right come to find out. I am going in to the Cleveland Clinic (Love the

Place) for corrective surgery in sept, but was advised that i may infact

have further problems as I age. And will face the ectomy too. I just pray

that this surgery works for me. And that i don't have to have more. I am

contacting an attourney at this time due to the boched surgery. The Dr's

at Cleveland said that it was improperly done and HAS to be corrected and

that I can not live like this. I hope you find help soon and a Dr that

cares.

[Guest guest]

> I live in Tampa Fl, I have had A for 12 years I have had 3 dilations

> now they want me to have the surgery the Doc is very good his name

is

> Rosemurgey and he operates Tampa Gen Hospital which is also a

> teacheing hospital he has done the Hellers Myotomy more then 160

times

> but I am belive it or not overweight he needs me to lose 30 pounds

> has any one ever had to lose weight before surgery.

Hi Marisela,

My GI doctor scared me by saying because I am overweight that the

surgeon might not be able to do the procedure laparascopically but if

that was the case they'd have to do the open procedure.

However, when I saw the surgeon she said no problem - it is acutually

easier if the person is larger. I don't know if there is a point at

which they can't do it but she didn't make me think so. I had the

surgery just fine and nobody said a word about it.

I can hardly believe they'd tell you that you have to lose weight

first - only if it would be that the surgery would risk your life for

some reason (as in the case of advanced age, for example), but I can

hardly imagine that is the case for weight and if so, I would think

it would be for weight so high that losing 30 pounds wouldn't make a

difference.

Could just be the doctor being an a$$. I'd get a second opinion.

If you want to email me off the group, feel free, I can go into more

detail about my experience, etc.

[Guest guest]

Hi Kinkylilone...

Risks vary by individual and by surgeon. The overall complication rate

in adults who have scoliosis surgery is 35-70%. Most of the

complications, however, are small. Major risks include neurologic

injury, non-fusion, pain and even death. You should discuss the risks

with your surgeon. Make sure you understand what they are so you can

make an informed decision.

The amount of pain you'll have is also variable. After my surgery, I

felt like I'd been hit by a truck for several weeks. I've known others

who said that their pain was never very bad. The fact that you're very

young should definitely work in your favor.

You need to talk to your doctor about how much, if any, of your

deformity will be corrected. I've seen people who didn't look any

different after surgery. And, I've seen people who look almost

completely normal after surgery. The amount of appearance correction

you get is dependent on your own curves and your surgeon's skill. You

should ask your surgeon to put you in touch with some other people who

have had similar surgeries. Ask if you can look at their backs.

You should expect to be out of commission for at least 4-6 weeks.

Again, you'll need to discuss the details with your surgeon. After you

start feeling better, you should be able to start doing small things

around the house, but it will be quite a bit of time before you're able

to care for your family. If your child/ren are very young, your surgeon

might suggest that you wait until a time when you'll no longer need to

pick them up.

Good luck with your decision.

Regards,

[Guest guest]

Hi. I had the scoliosis surgery 3 months ago. I am 26 years old and suffered no

long term complications. Actually, I just had an appointment yesterday and my

bones are fusing very rabidly. Cosmetically, I did improve. I do not look

completely normal, but my waistline is almost even, and my general all aroound

apperance is better.

As for the negative aspect, it is painful. However, you have had children, and I

have not, so you have experienced great pain already. I had nothing to judge my

pain by. The surgery was not as panful as I thought, but I had fairly severe for

at least 2 months. Now at three months, I am just able to keep my place clean

and (usually) have dinner ready for my husband when he gets home. I cannot lift

more than 10 pounds for the next 3 months, and that would be difficult for your

kids to understand. I am assuming your children are quite young, so they are

still a lot of work. If you do not have some one helping you for at least 2

months after your surgery, I would wait. I was barely able to care for my plants

and my cats. However, if your mother, etc.. can commit to helping you (being

there everyday!), then I am sure that you could handle it. Are you having an

posterior or anterior approach?

Sign up for Internet Service under $10 dollars a month, at

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[Guest guest]

Helge:

I still get that swishing noise every once in a while. I even asked my doctor what it was, and he couldn't tell me. I am a medical transcriptionist and every once in a while I will type on a patient who describes this feeling (and they've never had c-toma). I have been really tempted to go and get my blood pressure checked at these times just to see if it's high (it's normally around 100/70). Has anyone else had this?

I.

[Guest guest]

Hi Helge,

The plug, I'm guessing is a tube through your eardrum to help with drainage.

How long it stays varies. I've had 2 tubes in my ears. One in my good

ear and it stayed in about 18 months. And a " larger " one in my bad ear that

has been in there at least 2 years now, and is still there. My doctor told

me he had put in one that would stay in longer. They do just fall out on

their own in time. They help to keep the inside of your ear dry, to aid in

healing and to help prevent the return of the C-toma.

As for the sound of your blood pumping in your ear. It will get less as you

heal. I still get it sometimes, and it can be annoying.

My guess about them stopping the vein from bleeding was they sewed it

closed. Just a guess...

Surgery takes a lot out of you. Especially surgery on the head which bleeds

a lot. Weakness is very common. In about a week to two you should be back

to your usual self.

God Bless,

Jane

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