Re: question about repeated surgeries...Attn Marie

[Guest guest]

Hi Marie,

I will give you my two cents worth :-) I have been dealing with c-toma since I was 9 yrs old. I am now 42. Between the ages of 9 and 18, I had 6 surgeries . I had my tonsils and adneoids removed, I had 3 reconstruction surgeries and PE tubes twice. By the time I was 28 yrs old, I was still have repeated infections in this ear and my doctor and I decided on a CWD at that time. Since then, I have had maybe 2 or 3 minor infections but no recurrence of ctoma. My eustachian tube function never did improve. I have had sinus surgery as well and that didn't improve things either. When c-toma was discovered in my other ear, my left ear, I opted to go directly to the CWD. I think for me, it was easy to make that decision for myself. If I was having to make these decisions for my child ( as my parents had to do for me ), I probably would not have chosen to go that route. But I am

happy with that choice. The CWD in my left ear was done 3 years ago and no infection or c-toma recurrence since. I have BAHA's ( Bone Anchor Hearing Aids ) for both ears. I don't know if any of this helps or not, but I know personally, I never regretted any of the surgeries or wished that my parents had made other choices. They made the best possible decisions based on the information they had at the time. Best wishes to you and Curtis

Ilonawe4counts@... wrote:

Hi All,My son just had another tympanomastoidectomy last week. He is recovering very well. The surgeon said it looked to him like the eustachian tube is starting to work (combo of tonsillectomy, adenoidectomy, getting bigger, and diet) and the middle ear looks healthier. He could see signs of past infection, but no current active infection. This was the good news.The bad news was that the surgeon didn't feel as confident as he wanted to that he had got all the ctoma. So he wants to do another 2nd look surgery in 6-9 months. I expected him to tell me that if he saw more regrowth at that point, it would be time to go to the CWD. However, instead he said that if he found more regrowth, we would be faced with the same choices we had this time (that is, if it looked bad go to CWD, if it

wasn't so bad stay with CWU and try to work more on the eustachian tube).The surgery last week was my son's 5th surgery. He had his first removal in April 2002, then in Oct 2002 second-look which found 3 tiny spots of regrowth to remove and the surgeon (different guy who left the state since) played the odds and went ahead with reconstruction. In Oct 2003, we had a second removal, then that surgeon went out on maternity leave. So, we had a check up with a different guy (the surgeon who did last week's) and he suggested trying the tonsillectomy, etc... instead of going straight to the CWD. So, in May 2004, Curtis had the tonsils/adenoids out. Then last week, Aug 2004, another CWU. The surgery now under discussion would be the 6th... now, I've heard it mentioned several times on this list that the rule is 2 removals, then CWD. On the one hand, I'm sure we might have got an extra surgery or 2 in here because we had to change surgeons so many times; on the other, I don't want to

give up too soon if the eustachian tube is starting to look better.What do you guys think of this situation?Thanks,Marie

[Guest guest]

Thank you! That is helpful to know... Marie

[Guest guest]

FYI My son is seeing a new otologist in Gainesville at the University of FL

since he is now a student there. The Dr. told us last week that a great deal of

research is being done on eustachian tubes and some really good techniques for

correcting them will come out in the next couple of years. He did not go into

what these techniques are but he said he is very optimistic about them. Just

thought you would like to know.