Author Topic: Question about a type of surgery  (Read 4953 times)

mke

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Question about a type of surgery
« on: February 02, 2014, 03:37:13 pm »
Good morning to all,

I've already written in the forum  Aug 2 and 29 2012, telling my situation and looking for some information.
All you have been helpful and friendly with me  :)
After that moment a lot of things have changed in my life, new job for me, marriage with my wife, new job for my wife, new house...accompanied by my problems.
Now the situation is similar to 2012, I live bad days and good days... but earing from the right side has dropped a lot especially in the noisy spaces or using only the right earphone. From the beginning of 2014 bad days are winning on the positive  :(
In July 2013 I went for the second time to Paris, in an Hospital and NF2 research center connected to LA House research insitute.
They suggest me first a "therapy" that improves the microcirculation based on a diuretic, second the possibility of a surgery, a decompression of the internal auditory canal made to reduce the pressure of the AN on the right acoustic nerve.
Entering from the middle fossa, milling the inner ear around the AN to increase the space. With this method the tumor doesn't compress the acoustic nerve and doesn't stop the blood circulation.
The target of the surgery (following the Hei indications) is the stabilization for at least one year. In some cases earing in stable for more than two years.
I've started with the drugs and for the first months I feel better. Unfortunately, as the doctor told me, the problems have returned and I start thinking about the second option.
I've spoken with the neurosurgeon who follows me in Italy about the surgery option. She says me that a surgery like that, using the middle fossa, is risky compared to the result. And that way is critical for the movement of the right brain side.

So I'm writing here to know if somebody has already experienced about this type of surgery...

Thank you for your help!  :)

Mke

Raven

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Re: Question about a type of surgery
« Reply #1 on: February 03, 2014, 02:02:45 pm »
I had the decompression done thru middle fossa on my right/good side, probably saved what little hearing I had left. That was in 2007, really haven't lost any hearing since then, but the annual MRIs shows no growth of the tumor either..................Any questions please ask away.

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

mke

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Re: Question about a type of surgery
« Reply #2 on: February 04, 2014, 03:45:00 pm »
Hi John

Thank you for your answer... It's very important for me.
I need some information to evaluate what to do.
If I understand correctly you lost your left hearing before knowing of NF2, after this they discovered bilateral neuromas. For the right one you make a decompression and by that time your hearing was stable. Is it correct? Any problem with brain after the surgery? How old were you when it happened and which were the neuromas measures?
Which are the differences between decompression surgery and removal surgery for the patient? Doctor said me that decompression has less impact on you than other type of surgery through middle fossa. Let me ask you all because unfortunately you have tried both.

Thanks for your time!

Mirko

Raven

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Re: Question about a type of surgery
« Reply #3 on: February 05, 2014, 07:38:06 am »
Hey Mike,

This my AN journey, I was 48 when this started, it might answer some of your questions.

Woke up one morning in July 2007 and could not hear anything in my left ear, had perfect hearing the day before. Went to a ENT, she put me on steroids and ordered an MRI to, in her words, "rule out the slim chance something else is going on". Go back two weeks later to see the ENT, no improvement in my left side hearing, right side was perfect the entire time. She starts telling me I have acoustic neuroma, a non cancerous brain tumor that can cause sudden hearing lose. I asked her if my wife should be hearing all this, she said yes, I will go get her. They come back in and the ENT is telling me how rare it is to have this tumor, she then says you have one on the right side as well which is extremely rare. The twins were both 1cm. She referred me to Dr. Eisenman at the University of Maryland Medical Center

At this point I researched my rear end off and found this site, I also realized I was in serious trouble and at the very least I would be permanently deaf in my left ear.

I consulted with Dr. Eisenman, he recommended surgery to remove the left one since the damage was already done. He wanted to preserve the hearing nerve for a cochlear implant down the road if needed, we did not have a plan for the right one at that point in time. We scheduled the surgery for November 2007.

A couple days before the surgery for the left side, the hearing in my right ear went down to a point my wife had to call Dr. Eisenman because I couldn't hear. Now the plan changed a little bit, we still did the surgery on the left side as planned. It was the middle fossa and I was on the table for 12 hours. The plan was to keep me in the hospital and do the second surgery a week later. I recovered so well they sent me home, I came back eight days later for the right side surgery. The right side surgery was the middle fossa decompression you are asking about, I was on the table for 8 hours for this one. When my Dr. explained this to me it is basically how you described it. He did mention it is much easier the actually removing the tumor and the facial nerve is never in harms way. Other then the ringing in both ears the only other problem was my left eye wouldn't blink for about two weeks.

This is where I'm at today.......I have balance problems and ringing in both ears, I get annual MRIs and the right side tumor is still there but is stable and has not grown. Saw my Dr. in December and I asked him what would we do if this tumor has to be attended to, he is recommending surgery, I was a little surprised at that...............hope it never comes to that.

Oh, about a year ago I got Phonak Bicros hearing aids, let me tell you these things are fantastic, I can actually hear sounds on my left/deaf side, phone converstaions as well.

Hope this helps

John



7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

mke

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Re: Question about a type of surgery
« Reply #4 on: February 08, 2014, 09:24:01 am »
Hey John, I’m sorry for late…thank you for your clear answer.

In your case it was important that in the left surgery doctor left the hearing nerve to use a hearing aid. In my case they said me that in the surgery is necessary to remove the nerve too because at 99% is included in the neuroma (schwannoma), that usually arises from vestibular nerve in NF2. Depends on the case. As you know without the nerve is possible to use an Abi aid but the results respect to your case are different and usually more poorly  :-[

After your surgery you have not had problems for maneuvering in the lobe of the brain? With the middle fossa way my doctor repeat that the suffering for the brain is greater compared with other routes.

Mirko

 


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