Re: who regrets having this surgery

[Guest guest]

The absolutely worse case scenario in my case would have been meningitis and ulitmately death. His words exactely. Mine was already headed into the brain so bad that I had brain matter hanging out. I had 3 surgeries (2 on the left and one in on the right) in less than a year and it was completely worth it.

chin up

JO

From: supermom1@... <supermom1@...>Subject: who regrets having this surgerycholesteatoma Date: Saturday, July 18, 2009, 12:33 PM

Hi everyone,I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in

advance.

[Guest guest]

The old adage, "a stitch in time saves nine" applies well to Cholesteatoma surgery. My left ear was not corrently diagnosed for 10-15 years, and as a result all of the inner ear bones were destroyed. If I hadn't had it taken out then, it would have continued to grow.

When I got a "small" CToma in my right ear several years later, I didn't mess around and got the surgery scheduled immediatly.

The key thing is to make sure you identify a world class surgeon. Getting it removed is the only viable option, it can't be wished or prayed away and there is no magic potion or herb you can eat to make it dissappear.

Would I do this again? Yes, but now I am "CToma aware", it wouldn't take years of visiting nincompoop ENT doctors and getting misdiagnosed, I would go straight to a world class surgeon and get it taken out.

From: supermom1@... <supermom1@...>Subject: who regrets having this surgerycholesteatoma Date: Saturday, July 18, 2009, 1:33 PM

Hi everyone,I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in

advance.

[Guest guest]

Hello there,

I agree it can look like your son will have a lot of issues afterward. But it

is different for every person...most of the people on here who talk about having

so many issues afterward is because they took so long to get the cholesteatoma

taken care of. I am 29 and had tons of problems when I was a kid and because of

that I got a ctoma and had to get it taken out almost 2 months ago. I have a

great surgeon so when he said it had to come out..I got it out. Now considering

your son is so young..better to get it out then have problems down the

road...remember the worst thing that can happen if not taken care of is

death.....so when they say death..I say take it out. It can erode the bones

that connect up to your brain..and that can cause death...no its highly

unlikely...but why take that chance....my hearing is not as good in that ear...I

cant taste all that well on that side of my mouth and my ear is still oozing a

little...but I feel better knowing it wont kill me now.....just have it done

cause the longer u wait...the more problems hell have afterward if not taking

care of...good luck

>

>

> From: supermom1@... <supermom1@...>

> Subject: who regrets having this surgery

> cholesteatoma

> Date: Saturday, July 18, 2009, 1:33 PM

>

>

>  

>

>

>

> Hi everyone,

>

> I've been chatting with a few of you. No one seems immune from many problems

after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes

in mouth, balance issues, etc. And they seem to drag on for years, in some

cases. Would you do this again? Do you ever wonder if this surgery was really

necessary? Of course, NOT doing it means, as some have said, you live as a

" ticking time bomb " , but has anyone considered finding a way to disolve the

growth, through diet or any other complementary means? There really has to be a

better answer, don't you think? Has anyone asked their surgeon what the worse

case scenario is, and I mean the worst, that could happen in the distant future

if surgery is not done? These are important questions that I prefer to have

answers to before I subject my 11 year old to this surgery with so many " after

isues " . Thanks for any of your thoughts in advance.

>

[Guest guest]

the worst case if you dont have this surgery is that you will Die...That sounds bad enought for me....

Tom Hansen

From: "supermom1@..." <supermom1@...>cholesteatoma Sent: Saturday, July 18, 2009 12:33:23 PMSubject: who regrets having this surgery

Hi everyone,I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in

advance.

[Guest guest]

For All

 

I have seen with my own eyes, many cases dying of intra cranial infection due to C-Toma.

Many of these were my cases, who did not follow my advice to get srugery done

Even if chacne is very few, no one should take risk

Good luck

Dr. Arun Gupta, ENT Surgeon,India 

On 7/18/09, supermom1@... <supermom1@...> wrote:

 

Hi everyone,I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a " ticking time bomb " , but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many " after isues " . Thanks for any of your thoughts in advance.

[Guest guest]

Thats it in a nutshell hey ....and oh so true . None of us wanted the surgery Im sure and I must admit post surgery hasnt been pleasant but each daygets better ....cheers

cholesteatoma From: pingmn123@...Date: Sat, 18 Jul 2009 18:36:05 -0700Subject: Re: who regrets having this surgery

the worst case if you dont have this surgery is that you will Die...That sounds bad enought for me....

Tom Hansen

From: "supermom1rogers" <supermom1rogers>cholesteatoma Sent: Saturday, July 18, 2009 12:33:23 PMSubject: who regrets having this surgery

Hi everyone,I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in advance.

Check the daily blob for the latest on what's happening around the web What goes online, stays online

[Guest guest]

Worst case according to my surgeon ...meningitis , brain absess = death.....as for dissolving etc I looked for months for alternative measures and sorry but none proven so far this is one of those cases where doctor knows best cheers

cholesteatoma From: supermom1@...Date: Sat, 18 Jul 2009 17:33:23 +0000Subject: who regrets having this surgery

Hi everyone,I've been chatting with a few of you. No one seems immune from many problems after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes in mouth, balance issues, etc. And they seem to drag on for years, in some cases. Would you do this again? Do you ever wonder if this surgery was really necessary? Of course, NOT doing it means, as some have said, you live as a "ticking time bomb", but has anyone considered finding a way to disolve the growth, through diet or any other complementary means? There really has to be a better answer, don't you think? Has anyone asked their surgeon what the worse case scenario is, and I mean the worst, that could happen in the distant future if surgery is not done? These are important questions that I prefer to have answers to before I subject my 11 year old to this surgery with so many "after isues". Thanks for any of your thoughts in advance.

Sell your car fast. Need a new model in your life?

[Guest guest]

---

Hi Denna

I don't think there is any other choice for this except having the surgery. I

wish my c-toma had been diagnosed earlier. By the time the doctor figured out

what was wrong, it had already destroyed all the hearing bones and my eardrum.

So delaying surgery is definitely NOT going to help at all, and will only cause

more problems for your son.

This disease will not go away with health foods and alternative medicines

(though it would be nice if it did!). Surgery is the only choice. It's true that

the surgery itself can cause some problems, but my cholesteatoma had already

caused a number of problems before I had surgery, such as pain, hearing loss,

tinnitis, total loss of my eardrum, etc. So please, don't delay surgery for

your son hoping for some type of alternative treatment. There isn't any.

Jackie

In cholesteatoma , " supermom1@... " <supermom1@...> wrote:

>

> Hi everyone,

>

> I've been chatting with a few of you. No one seems immune from many problems

after surgery-repeat surgeries, can't get water in ears, dizziness, funny tastes

in mouth, balance issues, etc. And they seem to drag on for years, in some

cases. Would you do this again? Do you ever wonder if this surgery was really

necessary? Of course, NOT doing it means, as some have said, you live as a

" ticking time bomb " , but has anyone considered finding a way to disolve the

growth, through diet or any other complementary means? There really has to be a

better answer, don't you think? Has anyone asked their surgeon what the worse

case scenario is, and I mean the worst, that could happen in the distant future

if surgery is not done? These are important questions that I prefer to have

answers to before I subject my 11 year old to this surgery with so many " after

isues " . Thanks for any of your thoughts in advance.

>

[Guest guest]

Hi

I just wanted to add my voice to other replies.

I had a cholesteatoma which was not diagnosed and therefore I have experienced

the effects of not having surgery!

I developed a brain abscess and was not expected to survive. I have been very

fortunate in that I have survived and have not even suffered any resulting brain

damage.

I had an emergency mastoidectomy as well as surgery by neurosurgeons to drain

the abscess. I was in hospital for almost two months and had to continue on

anti-biotics for a further two months. I lost the ability to walk and had to

learn again, there were lots of other things too. I had further revision

surgery eight months later and have had plenty of outpatient appointments. I'm

now just going every six months, this is four years later.

So much of my middle ear was destroyed that no re-construction was possible. At

the beginning of last year I had the surgery for a BAHA implant and since I have

had the BAHA itself I have been able to cope with hearing so much better.

Do not put off surgery, I am extremely lucky that I am still here!

Sue