cholesteatoma removal

[Val]

Posted this on the disabilities board, but thought some of you might know over here...

My DD9 is HOH and has progressive bilateral hearing loss since at least age 5. Our original ENT retired 'early' right after DDs tube placement in March of 04. The other ENTs in the practice refused to take on her patients, and one did a quick look/see after surgery, said all was fine, and showed us the door. Our audiologist has thought for over 2 years that something was not right, but we couldn't get the HMO to allow us to see an ENT outside the practice. Now a new ENT in a different practice has joined the HMO- and we saw him today. He spent 5 minutes reading her history, did a quick look in each year and diagnosed her with holes in both eardrums, badly placed tubes that were pressing on the ossicles and a huge cholesteatoma in her left ear. Said it was extraordinarily obvious what the problem was and questioned why nothing had been done for years.....wanted to do surgery immediately, except the infections in her sinus were too bad (he thinks caused by drainage from the ears!). We need a week of steriods and antibiotics and then surgery on the 5th. Can go through the ear canal on the right ear for new eardrum, but will do the invasive through the bone procedure for the left ear to remove the mass.

Anyone with any experience with this surgery? How was the recovery, and how much hearing did you have left. What I am reading on medline, etc., is potentially really scary. IS it that bad, or am I over reacting?

(and don't mention malpractice- right now i am thinking more like homicide given all DD has been through.....we will wait to see the outcome of this surgery before we start down that road!).

 

[bsnyder]

Posted this on the disabilities board, but thought some of you might know over here...

My DD9 is HOH and has progressive bilateral hearing loss since at least age 5. Our original ENT retired 'early' right after DDs tube placement in March of 04. The other ENTs in the practice refused to take on her patients, and one did a quick look/see after surgery, said all was fine, and showed us the door. Our audiologist has thought for over 2 years that something was not right, but we couldn't get the HMO to allow us to see an ENT outside the practice. Now a new ENT in a different practice has joined the HMO- and we saw him today. He spent 5 minutes reading her history, did a quick look in each year and diagnosed her with holes in both eardrums, badly placed tubes that were pressing on the ossicles and a huge cholesteatoma in her left ear. Said it was extraordinarily obvious what the problem was and questioned why nothing had been done for years.....wanted to do surgery immediately, except the infections in her sinus were too bad (he thinks caused by drainage from the ears!). We need a week of steriods and antibiotics and then surgery on the 5th. Can go through the ear canal on the right ear for new eardrum, but will do the invasive through the bone procedure for the left ear to remove the mass.

Anyone with any experience with this surgery? How was the recovery, and how much hearing did you have left. What I am reading on medline, etc., is potentially really scary. IS it that bad, or am I over reacting?

(and don't mention malpractice- right now i am thinking more like homicide given all DD has been through.....we will wait to see the outcome of this surgery before we start down that road!).

My neice had the surgery at age 10, about three years ago. When you say bone procedure, I assume you are referring to mastoidectomy, which is the surgical procedure she had for her cholesteatoma. She has had ear problems (multiple tubes, constant ear and sinus infections) since birth, probably as a complication of Turner's Syndrome. She's also has Asperger's Syndrome.

Her surgery was ultimately successful, the cholesteatoma has not reoccured - she already had some hearing loss prior to the surgery, but it has not gotten measurably worse since the surgery. It's my understanding that the untreated cholesteatoma would almost certainly lead to additional hearing loss so you have to factor that in when you read about the potential risks.

Not to scare you unnecessarily but I used the word ultimately because my neice developed a mycobacterial infection after the surgery which was very difficult to diagnose and then treat. She was in and out of the hospital, and on IV antibiotics for months afterwards, and even had to utlilize hyperbaric therapy to get the wound to heal. I do want to stress this is a very rare occurance, so not something you should worry about with your DD. My neice's pediatric ENT is one of the best in the state, and does hundreds of ear surgeries a year (I call his office "The Ear Factory) and he had never had anything like it before.

Good luck to your DD - fingers crossed that the surgery goes smoothly and is a complete success!

 

[Papa Deuce]

My daughter just had the surgery early in the summer. It was fairly complex. Her cholesteotoma was sort of bad / different. She was feeling like herself in less than a week. She had to stay in the hospital overnight.

She STILL is not allowed to go swimming unless she uses a special preventive medicine. She was not allowed to swim at all for 5 months.

Her hearing has improved, but she still isn't where she needs to be. They "may" have to go back in and do it again next spring. I sure hope not.

BTW, and not to scare you, but if this isn't taken care of, there can be some NASTY problems down the road.

Good luck!