Re[2]: Surgery Question

[Guest guest]

Thanks Kazzy!

I'm terrified of the 1st operation and I have it in my right ear as well so that's another operation. I have decided to use mind over body and after the original operations I refuse to allow it to come back!

You mentioned you had a CWD and implant surgery....how is your hearing now?

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Original E-mail

From: Kazbat

Sent: Jun 12, 2006 01:22 AM

cholesteatoma

Subject: Re: Surgery Question

Hi

I had a cholesteatoma removed from my right ear when I was 37 - back in 1999. I've only ever had the one (thankfully!), but have had constant and on-going problems with infections and perforations of my right ear (with occasional problems in my left ear too), but so far no recurrence of the dreaded cholesteatoma.

When I had my surgery in 1999 (radical modified mastoidectomy, tympanoplasty and ossiculoplasty), I had a CWD which better allows my surgeon to be able to use the suction facilities to get rid of the stuff from my ear. I have this done a few times a year.

In 2003, I had a massive infection and perforation in my right ear that caused the total collapse of my middle ear, as a result of which, I was given a choice of middle ear re-construction or implant surgery for BAHA (Bone Anchored Hearing Aid) - I chose the latter and don't regret it one bit.

Regards

Kazzy :-)

Re: CHOLESTEATOMA

Hi ,

I'm sorry to hear about your son's recurrence and number of surgeries. I'm right there with you with my 10 year old son, with surgery number 6 scheduled for July.

My daughter, who does not have CToma was a candidate for growth hormones. She made it to the 3rd percentile on height and weight, so never took them. However, we still see an endocrinologist annually. I'd check with the doctor who perscribed the hormones, as they can cause many side effects (I'm sure you know more about that than me).

Also, are you seeing an otologist? If not, you might want to have a consult with one. We have a fabulous ENT, who referred us to one after doing my son's previous surgeries, as he recognized that when Ctoma recurs, a sub-specialist needs to become involved.

Best of luck and please post any info. you find regarding the growth hormones.

Sheri

[Guest guest]

Hi

These days, I'm registered deaf with Social Services and have support from them by way of physical assistive devices (vibrating smoke detectors, vibrating clocks, etc.). I have very little hearing in my right ear due to the middle ear collapse I had; my left ear has sensorineural hearing loss as well as some conductive loss too so things can be a bit tough some days. With the BAHA however, things are great. I don't have any results with the BAHA, but know that I can enjoy life with it, it's that good :-)))))))) As I've said to many before, for me, BAHA is the best thing since sliced bread :-))))))) haha.

Don't be afraid of your surgery - greet it as a means to an end; you need it to get rid of the Cholesteatoma. You'll be right as rain shortly afterwards!

All the very best

Kazzy :-)

Re: CHOLESTEATOMA

Hi ,

I'm sorry to hear about your son's recurrence and number of surgeries. I'm right there with you with my 10 year old son, with surgery number 6 scheduled for July.

My daughter, who does not have CToma was a candidate for growth hormones. She made it to the 3rd percentile on height and weight, so never took them. However, we still see an endocrinologist annually. I'd check with the doctor who perscribed the hormones, as they can cause many side effects (I'm sure you know more about that than me).

Also, are you seeing an otologist? If not, you might want to have a consult with one. We have a fabulous ENT, who referred us to one after doing my son's previous surgeries, as he recognized that when Ctoma recurs, a sub-specialist needs to become involved.

Best of luck and please post any info. you find regarding the growth hormones.

Sheri