Pre-Treatment Options > Pre-Treatment Options

Recently Diagnosed - 38 year-old, 1.3 cm AN

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Walkos:
Hello everyone, I am 38 years old and recently diagnosed with a left-side AN measuring 1.3 cm.  I experienced sudden hearing loss after a bout with a cold / ear congestion.  Fortunately, the Predisone worked well and I regained 90% of my hearing (I have 100% word recognition).  My current symptoms are mild tinnitus and mild hearing loss.  All very tolerable.

After a few consultations, radiation and surgery are both options.  One neurosurgeon was very clear that he would advise radiation given that I have mild symptoms and believed it was the best chance to maintain my hearing and quality of life.  The other said both are options but leaned more towards surgery because I was 'young'.

I recently spoke to a family friend who is a neurosurgeon (practiced for ~25 years).  He admitted that he only saw ANs about 1-2 per year, but did say that he recommended radiation.  He believes the outcomes are very good (particularly regarding tumor control) and has a general perspective that it is often better to avoid surgery when possible.

I've read a significant amount of the literature for both radiation and surgery.  I understand the long-term chance for hearing loss with radiation.  I've gotten two quotes regarding hearing preservation with surgery (one surgeon said 50% chance of hearing preservation, other said 70% chance).  I might be naive, but I am not particularly concerned with the long-term impact of radiation.  This technology has been used since 1969 and the level of Gy used in this situation seems much less than other conditions.  My biggest concern is the long-term chance of hearing deterioration. 

The neurosurgeon I saw recommended that I shouldn't wait too much (he has treated over 600 AN patients, so seemed to have sufficient experience).  He gave it a 100% chance that I will loss my hearing if I do nothing.  His advise was to move forward with radiation (Gamma Knife) sooner than later.  I have to say, this surgeon was wonderful and he spent 1 hour with my wife and I talking through his logic, the data, and walking us through the details of the MRI.  He was really wonderful.

I wanted to reach out to this group to get any thoughts before I take the next step.  I am getting ready to schedule the appoint for the radiation (which will be fractionated radiation over 5 days), but I wanted to reach out because I am nervous.  While I understand these are benign (and frankly, I am sure most that sit in a neurosurgeon's waiting room would like to trade places with me), I am scared.  I have two young kids and a great wife - I want to get back to enjoying my time with them...

Any thoughts / advice? 

rupert:
It's just my opinion but, I think you are making a very wise choice.  You've done research and feel comfortable with your decision.  As far as hearing goes, it may or may not be gone at least in the short term.  I think waiting, surgery or radiation,  long term chances are you might lose hearing. I know a lot of people stress a lot over it as did I but,  that's why we have two ears!  The chance of any major complications with radiation are very small compared to surgery.  I know some doctors say that surgery is best because you're young but,  what happens if you are in that percentage with permanent problems.  Facial paralysis, eye problems, headaches, balance?  That's just longer you have to live with them.  You are very lucky that you have all options available to you,  some don't have a choice. You also have a very high probability of successful treatment.
   I had very few symptoms with a 2.6CM AN.  My hearing was mostly gone at diagnosis as it had probably been growing over 10 years.  I'm sure you will do fine and good luck to you.

Walkos:
Thanks for taking the time to respond. It made me feel better.

notaclone13:
Walkos, it sounds like you will be having Cyberknife treatment. Gamma Knife is a one time treatment and you mention that you will have 5 treatments.  Would you mind mentioning which state you live in and what medical facility you will be using?  If your neurosurgeon has treated 600 ANs he is extremely experienced in this area and I would trust his judgement. I am in the watch and wait mode at present, but if I have to get treatment, cyberknife will be my choice. I think you are making the correct decision for you.

Walkos:
The doctor said he will use Gamma Knife Icon, which is the latest version of that technology (I believe it launched in 2016/2017).  He has Cyber Knife at his facility but recommended Gamma Knife Icon. I’ll direct message you with more specifics regarding surgeon and facility.

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