ANA experience..Surgery

[digby]

I had surgery about 18 months ago and would be glad to share my experience with anyone facing the very hard decision about surgery vs radiation.  I live in Raleigh NC and had one of the finest surgeons in the world.  He was able to completely remove the 1.5 cm neuroma that was badly overgrowing my facial nerve, and had all but consumed the balance nerve.  I had a rough time with the surgery and it took me 4 months or so to get back on my feet.  I still have some balance problems but they are transient and made a bit worse as a result of my non-neuroma ear being in poor shape.  I have recovered to the point where I am back to hunting and feel at ease climbing 30 feet high with lineman's spikes. I KEPT 100% OF MY HEARING based on a hearing examination last week.  The surgery option can go very wrong if you do not have surgeons that are excellent.  I spent two years dithering around at John Hopkins and they assured me I would loose all hearing by either radiation or surgery.  They also lead me down the wrong path for this period of time stating that radiation was the best option and only when my neuroma began to grow rapidly did they share with me, under pressure from me, that their radiological success rate was not as good as they had suggested.  It appears they have a new more robust data base now and it showed problems.  I never could extract any real details from them.  They shot down on me very quickly when I was about to choose the radiological method of treatment.  I know how stressful and confusing the situation is and how difficult it is to make an informed choice for treatment.  Please feel free to contact me if I can be of any help to you.  
My name is warren davis.. You can PM/email me here

[ppearl214]

Hi Warren. I'm so thrilled to hear that things have gone well for you.  Thank  you for sharing this with us and opening your inbox to all with questions (btw, had to omit your personal email address from public post but I know folks will PM/email you here with any questions and to learn more about your experience).

Continued wellness wishes to you!
Phyl

[Jim Scott]

Hi, Warren - and thanks for joining and posting your AN experience.  As an AN patient that also enjoyed a good surgical (and radiation) outcome, I share your conviction that information is critical and even more so, when choosing surgery, engaging an AN-experienced surgeon.  Surgical recovery is usually slower than any of us would prefer but you seem to have done remarkably well.  I'm pleased to read that kind of post and I appreciate your willingness to share your positive AN experience with others, as well as warn the newly-diagnosed about mis-information and the importance of being proactive when researching hospital/doctor/treatment statistics and other crucial information.  I look forward to seeing more from you in the future as others respond to your post.

Jim

[leapyrtwins]

Digby -

thanks for sharing your experience.  I'm so glad you found a wonderful surgeon to remove your AN - I had two wonderful surgeons myself 

I'm sorry to hear your recovery took 4 months, but I'm glad to hear that the outcome was so good.  You must be thrilled to have retained 100% of your hearing; as you know, that doesn't happen all the time.

Best,

Jan