The logic of hearing preservation - help!

[Boppie]

Beesgirl, I have a benchmark in my memory for hearing loss.  I had lost 65% of my right side hearing and none from the left.  My tumor was 2 cm , I had translab and have adjusted to total hearing loss in that side.  There is still a huge difference between  zero and 35% when it comes to hearing.  Although my word recognition scores were pretty bad on the affected side, I could still tell you if a sound was coming from the right or left.  Directional descrimination is the thing I miss the most.  There is no hearing aid that tells direction.  I am not sorry I had translab since the tumor was very near my brainstem.

So I would be asking how threatening is the AN and how much hearing is remaining?  Surgeons don't like to open your skull for a 6mm tumor.  Why can't you go for radiation? 

Surgery would probably be suboccipital to preserve hearing.  Don't rush.

[Boppie]

I mentioned to both my doctors that I was having stabbing pain in my ear only on the AN side and they insist it's unrelated...a bit too much of a coincidence...
Thanks again,
Liz

Liz, I had bad stabbing pains in my ear for several years ...felt like a knife..my doctor just kept treating me for ear infections and prescribing antibiotics and decongestants...I believed the tumor began its attack on my hearing nerve around that time.  I only knew that ANs existed four months before my surgery.  Keep on pushing and researching.

[hgtvqueen]

   Beesgirl - I've had the same thoughts about my daughter.  No real issues with hearing and balance yet.  Just "waiting and watching"   However, our neurosurgeon has also told us that we all need to learn sign language because, she will eventually be completely deaf because she is NF2.   He doesn't advocate GK for the same reasons you mentioned - long term studies and the malignancy thing, plus the potential to do more damage with the radiiation.   I sent her records to HEI last Friday and am anxiously awaiting their response.  I just don't understand why not remove it now and try to preserve at least some hearing??  It seems like a better alternative to me than just sitting around waiting for the hearing to go. I'm just scared out of my mind about this thing.  She is only 15.

[beesgirl]

I really feel for you and your daughter, this must be a very trying time.

In my case the doctor didn't advocate surgery even though I want to preserve my hearing, but it wasn't until my second visit that he said it was due to the location of the tumor rather than the size.  I understand that the location is really key to hearing preservation.

I hope that HEI comes through for you.  Be aware that when they called me it was 4am LA time, 7am Atlanta time!  Hopefully they will take your daughter's NF2 into consideration and opt to preserve any hearing they can.

I'll be thinking about you.

[tony]

Reply to HGTVQUEEN - Sorry for your worries
there maybe an alternative for your daughter
She is young - and currently can hear
Basically this means she could become quite adept at
lipreading (the age and ability to hear currently, assist this)
All the familiy would need to do is to carefully learn to
pronounce and speak properly to help her
(slang or even mumbeling will make it harder to do)
A lipreading skill will help her even if/when she may have only
partical hearing - since she will understand more
The sooner she starts the easier it will be.
Best Regards
Tony

[Jeff]

  Beesgirl - I've had the same thoughts about my daughter.  No real issues with hearing and balance yet.  Just "waiting and watching"   However, our neurosurgeon has also told us that we all need to learn sign language because, she will eventually be completely deaf because she is NF2.   He doesn't advocate GK for the same reasons you mentioned - long term studies and the malignancy thing, plus the potential to do more damage with the radiiation.   I sent her records to HEI last Friday and am anxiously awaiting their response.  I just don't understand why not remove it now and try to preserve at least some hearing??  It seems like a better alternative to me than just sitting around waiting for the hearing to go. I'm just scared out of my mind about this thing.  She is only 15.

Hello hgtvqueen,

My name is Jeff and I too have NF2. I am treated at HEI and have had great experiences with them. I would certainly discuss tumor removal with them. I have discussed it with Doctors Friedman and Hitselberger in the context of my daughter, who has a 50/50 chance for having inherited NF2 from me. They have removed tumors from young NF2 patients ( I know that they are doing one next month on a 9-year-old). They are pretty excited about some successes with young patients using the middle fossa approach.

My experience, however, makes me wonder about surgery for young NF2 patients. I wasn't diagnosed until age 36; and I had perfect hearing then. I am 41 now and still have perfect hearing in one ear even with a large tumor. So, my question is: Do you risk a possibility of hearing loss by having surgery or just ride it out until either the tumor causes hearing loss or other problems? Also, researchers are working on hearing devices. HEI pioneered the auditory brainstem implant and are now working on a penetrating auditory brainstem implant. Perhasp by waiting your daughter may be able to take advantages of newer technologies.

I agree with Tony about lipreading. I am busily working on lipreading and sign language. Unfortunately, there are no guarantees with any course of action. Early surgical intervention does not guarantee hearing preservation, nor does waiting/watching or radiosurgery. It's a tough decision to make. I am sorry that you have to deal with this. Please let me know if I can help in any way.

Jeff

[hgtvqueen]

    I got a call from Dr. Friedmann from HEI yesterday.  He was so kind and reassuring.  He proposed removing the very small tumor from her right ear- thinks we can preserve most hearing on that side.  However, he would leave the left side alone for now & possibly later on do a procedure to relieve pressure in the auditory canal, which could prolong hearing for several years.  But at least we could save hearing on her right side. Dr.  Friedmann also clarified some mis-information our current neurosurgeon had given us.   I feel like the weight of the world is off my shoulders.  My daughter is such a stoic at age 15.  When I told her the news - she just shrugged her shoulders and said "cool". 

Thank goodness for the internet and this website.  I would never have heard about HEI.  The key is to do your own research and get 2nd opinions.  I was blown away (in a good way!) by what Dr. Friedmann told me.

[Jeff]

Great news for you! I am a big fan of Dr. Friedman. He removed one of my tumors and he reviews my films and closely follows my other AN. He calls me every 6 months to discuss my scans. I appreciate his confident yet compassionate approach. I wish you and your daughter the best. You're in great hands.

Jeff