Re: 3 Weeks Post-Op, 3rd surgery in 13 years/HELP, stressing surgical concerns:

[Guest guest]

Hi Yvette,

We have some things in common...I'm 45 and I had my 3rd surgery to remove a cholesteatoma in my left ear this July. The other two surgeries were back in 1999 and 2000. I also have one hearing bone left. The doc was originally going to do a wall down but changed his mind during surgery!!! He tried to save as much as he could - he rebuilt the ear drum and widened the canal. I also have that clogged feeling, probably due to a lot of scar tissue. And I don't hear too well out of it - I'm supposed to have a hearing test in November. I'm not expecting great results....

As far as sneezing, you can with your mouth open. How can the doctors expect you not to sneeze at all? Especially with allergies....I asked my doctor about having a custom made ear mold (I'm not supposed to get water inside either) and he said his office can make them. But I have to wait until things heal some more. He even said I could go under water with them! Although I think I might be a little afraid to do that. Water does a lot of damage if you've gone through what we have....Maybe you can have a custom made ear plug and use it during bad weather (cold, rain, snow, etc.) to prevent you from getting dizzy....

Anyway, good luck - hopefully the worst is over.

P.S. I had all 3 surgeries in Manhattan (2 at NYU and the last at NY Eye & Ear - same surgeon)...

From: yvette143usa <yvette143@...>cholesteatoma Sent: Tue, October 25, 2011 9:22:01 PMSubject: 3 Weeks Post-Op, 3rd surgery in 13 years/HELP, stressing surgical concerns:

Hi,

Well I never thought it would happen again; but after 11 years I just came out of a 3rd MAJOR ear surgery! I have, by the way, ALWAYS had the BEST Surgeons (Manhattan, Hopkins); I"m not so sure all of this just isn't in the hands of God (actually I am pretty sure it is!). I came out to visit my son in the Midwest, in an obscure place (to me); this after caring for my mom who passed from lung cancer; and after the previous year of losing my beloved sister - she was 49, my age now. Anyway, back on track - I got so sick while here w/my son, for the first time in over 11 years my ear started oozing pus and never stopped. Long story short, after a CT that showed a very likely possibility of a return cholesteatoma, I opted for surgery (really there was no other choice). I have trusted the Surgeon (little known teaching hospital and all); he is confident, experienced, kind, runs a very busy ear institute; I am VERY PLEASED w/what he has done. I

had a 2nd cholesteatoma removed (1998 had one removed from my facial nerve; was lucky, this one ate down and back and not into the brain); I had a 2nd tympanoplasty w/graft; titanium placed as I lost 2 hearing bones due to infection; I had a modified canal-wall-down mastoidectomy w/meatoplasty (lovely - NOT!!!); and will now have to go bi-annually for cleanings (yuck! Hopefully I will have NO MORE INFECTIONS, nor cholesteatomas EVER!).

Here are my concerns -

1) I am sneezing! I cannot help this, I have horrible allergies and this is the worst place in the nation for them (Indiana) - my Surgeon told me so. I do not blow my nose.

2) My left ear feels so swollen/clogged (from sneezing? gelfoam? ). Most packing was removed last week; again I had surgery 3 weeks ago.

3) I am FREAKING-OUT that I will or have destroyed my new eardrum; that my cholesteotoma will return from the perf/infections.

4) Also, I was told that my infection ate so close to the balance system, from now on I have to be very careful w/temp. or wind changes to my ear, as I will get dizzy - Does this mean vomit??? I am now buying ear mitts/muffs/caps, etc. - (translates to whatever I find that will keep water/wind out of my ear!)

5) I REALLY wanted to be able to swim again - have not been able to actually/safely go under water in over 11 years. Surgeon said NO MORE SWIMMING UNDER WATER EVER, again I will get dizzy.

Does ANYBODY have comments/answers to my concerns??? Is this sneezing (approx. 10X a day) going to ruin my new eardrum??? WHEN does the clogged feeling go away; and when will my hearing return???

Answers are greatly appreciated!!!

It's been over 10 years since first surgery; I forget about 'post surgery' and what I might expect; also this time is a bit different.

BTW, ALL this happened due to a REALLY, REALLY BAD HMO DOCTOR (in Pennsylvania) that said I had an allergy in 1997, when in fact I had a head cold. He REFUSED to give me antibiotics and destroyed my life!!!

Thank you.