Need help with newly diagnosed AN

[sree]

Hi everyone,
Thank you so much for the support you guys give to the newbies like me.
 I recently found out that I have AN (6.8mmx4.2mm) in my right ear.My symptoms so far some hearing loss,tinnitus, mild ear pain, occasional little tingling.I lost some hearing I don't know technically how much but  I can still hear the phone in my right ear  but its low.So I believe I still have some hearing left in that ear(based on self testing )  But my doctors decided that I already lost usable hearing which is hard to believe since I can still hear the phone.So they suggested watch and wait for , now with 6 months followup MRI,because there is nothing to lose.If the tumor grows or my symptoms gets worse they recommended Radio surgery due  to my personal situation.So we focused on Radio surgery and the Radio surgeon says that its best to wait until the tumor grows little bit more that I still have a small one.He says that even with the Radiation I will totally loose my hearing  and I might get other side effects like facial paralysis,loud tinnitus which are permanent.He says that if the tumor grows there is a chance of protecting  my facial nerve from getting damaged by radiation.Because the bigger tumor covers more area so the rays splatter less and this way there is less damage to other things.Forget about the hearing because I am already deaf or going to be deaf that side(according to him).

My apologies fir the long message but I need help. Before meeting the doctors I was under impression that the sooner the better chances of preserving hearing and less side effects.Also I thought CK is the better option to save the remaining hearing.I know that there is no guaranty that I will not lose rest my hearing I am prepared for that.But what I am trying here is If there is chance of preserving why don't we try it? right now I am on W&W but still trying to find some answers.
Thanks for your patience and hope I get some help to decide.
Thanks and regards

[LakeErie]

I had surgery and not radiation, but it may help you get the information you want if you identify where you live, which neurosurgery center you visited, if you had a 2nd opinion or just the one.
Experience with treating AN's is essential regardless of the treatment type. More than one opinion can sometime give you options. As an example, Stanford is a recognized CK treatment center while Univ of Pittsburgh Medical Center is an expert Gamma Knife center. Other equally good centers are available to you depending on on where you live, how your insurance works, and your ability / willingness to travel. I am sure that other posters with radiation experience will follow up on your post when they have more information. Good luck.

[arizonajack]

My AN hearing was about 90% gone when I was first diagnosed with a 3mm x 4mm x 9mm AN.

I could still hear faint sounds on the phone and could just about make out the tinny mouse voices of people on the phone.

6 months later at the time of my second MRI the tumor had grown by 20% and the hearing on that side was completely gone.

At the risk of sounding pessimistic my own experience suggests that your AN hearing might be gone by the time you have your radiation treatment whether it be Gamma Knife or Cyber Knife regardless of whether you have it sooner or later.

[sree]

Thanks for your replies.
We live in San Francisco  Bay Area,CA and I have Kaiser insurance.
I am 39, have a 14 yrs daughter with special needs.I am the one helps her at home.
It is hard to travel for us with 2 kids and no family support here in USA.
For these reasons we chose Radiation over Surgery.
I went to Kaiser Redwood City to meet 3 AN specialists who work as a team to treat ANs.
I have one more appointment with Radio surgeon in Sacramento Kaiser next week for second opinion.
I am also planning to go to Stanford for consult.
whatever I decide I have to go with Kaiser and I think they only do CK (San Francisco) at this point.
My doc suggested for my tumor it will be 3-5 days 45mins sessions.
Thanks

[Alison]

Hi sree. Sorry you have had to join our club but you'll find great info and support on here.

Re your concerns about hearing preservation: I had little noticeable hearing loss and little tinnitus before SRS (it was imbalance and dizziness that lead to my diagnosis). I was told that SRS may mean my hearing would go. I was fine for 3 months after SRS but then everything got worse and still is at 12 months.

Regarding the hearing I'd say it's pretty difficult to make out conversation in the AN ear. I no longer can use the phone in that ear, nor headphones. If I lie on my good ear in bed I can't hear sounds I can in the good ear, ie birdsong, door bell, any noise in the house etc. Before SRS I could hear rubbing thumb and finger together against the AN ear. Now I can only hear a loud clap.

Whether or not this hearing loss would have occurred without SRS on W and W I'll never know. Some people get  hearing back in time after SRS. It's so unpredictable, which is all the docs seem to say when we ask! I'm in the UK though. Hope that helps.

Alison x

[Echo]

Hello sree,

So glad you are getting several consults regarding radiation treatment.  My AN was 2.4cm when I had Gamma Knife three months ago.  I was told by my neurosurgeon with Gamma Knife I faced a 2 - 3% risk of facial "weakness" whereas with surgery I faced a 20 - 25% risk of facial "paralysis".   I could be wrong, but with the small size of your AN I would highly doubt that you are facing "paralysis".  Definitely follow through with other consults. 

Best of luck,
Cathie.