Another Newbie!

[Bobette]

Hello All,

I was just diagnosed with an AN on March 10th.  This all started after having a sinus infection last year and loss of hearing in my right ear that never came back.  After several months of frustration with my MD, I made an appointment with an ENT who sent me for a hearing test that confirmed severe hearing loss.  Sent for a MRI and the rest is history. 

Saw Dr. Cheung at UCSF on Monday.  He advised "watch and wait."  He said I am not a candidate for radiation at this point.  (Although I see on this site there are those with smaller tumors than mine that received CK.)  Initially I felt very good about his suggestion, but as I sit here with this roaring in my right ear that constantly reminds me that my tumor could be growing this very minute, I wonder how I will cope with that over the next year. 

I plan on going to Stanford and speaking with the CK people to see what they think. 

I personally know two people who have had ANs.  I don't feel either of them got a great result, but I guess that is a matter of perspective.  It is nice to read all these posts and see what all the options are, instead of just relying on a 30 minute meeting with a doctor.

Thanks for listening. 

Bobette
(conflicting reports on my AN - ENT says 2 cm
 surgeon says 12mm)

[millie]

Hi fellow newbie-
I was recently diagnosed too.  Is California the top place for cyberknife? I am in NY-eastern LI.  Sometimes I think this thing is growing and I should not wait 6 months; also I have read that whatever hearing is left may be better preserved with cyberknife.  I guess age is a factor in treatment-I am 64 but never been ill and still want to have fun with the toddler grandkids. Also my husband is looking at back (spnal stenosis) surgery.  We'd like to get on with our lives.
I am also wondering if Medicare covers these treatments-I have Blue Cross/Shield but does that help out with these treatments at 65?
Hang in there and have a good day.  Millie

[Sheryl]

Millie - my husband had Medicare and a good secondary when he had Cyberknife - we didn't pay a penny. 

Good luck - it's not fun when both spouses have medical issues but it sounds like you are thinking positively.

Sheryl

[Tumbleweed]

Hi, Bobette:

Especially considering the huge discrepancy in reported size of your AN by two doctors, I think you are wise seeking an opinion from Stanford doctors. Your surgeon is probably correct in reporting 12mm, as he is probably more of an expert than your ENT. But Stanford is the Rolls Royce of CK facilities, and Dr. Steven D. Chang (Stanford neurosurgeon and CK specialist) is perhaps the world's leading CK expert. You can email Dr. Chang at sdchang@stanford.edu and ask him to review your MRI and audiogram. He will give his recommendation for free if you do this by email and phone rather than schedule an office visit.

Dr. Chang told me that the sooner I got CK, the better the chance of preserving what remaining hearing I had left. He told me that only after I asked him how long I could stay in W&W; he never pressured me to make a decision. He is amazing -- as dedicated a doctor can possibly be to his patients. He usually answers emails within a few hours, even on holidays!

CK was extremely successful for me. You are on the right path.

Best wishes,
TW

[Suu]

Hi from me too

You can get through this next year of waiting.  You have all of us here to lean on and we will try to allay your fears.

Come back often and tell us how you're feeling and we'll gee you up or congratulation you on getting through the waiting week by week or day by day.

Lovenhugs,
Suu xxoo

[Bobette]

Thank you everyone for your response. 

I listened to a very good interview that was recorded of Dr. Chang at Stanford on - http://www.myacoustic.org/ .  It was very encouraging.  I have a call into Dr. Chang's office to make an appointment to see him. 

I figure it wouldn't hurt to have a consultation with the House Clinic also. 

I am so happy to find this site and for all the encouragement. 

Thank you all so much.

Bobette

[Jim Scott]

Hi, Bobette ~

Just wanted of offer you my welcome and encouragement.  I think you're on the right track by seeking numerous doctor opinions before making a definite decision.  Of course, I wish you the best as you embark on this journey none of us wanted to undertake. 

Jim