Hi anyone potentially interested in my (now) long-term experience.
I first realised something was wrong November 2013 when I was camped in Arizona, a snowbird and RVer at that time.
Tinnitus was slight at first but soon became very noticeable, traffic roar when walking was deafening and unsettling, driving my 3.5 ton dually a challenge, walking in a straight line even more so.
Reluctant to visit ER (I’m a Brit) I persevered through the winter and by April I’d learned to cope with my symptoms.  But my balance was awful and I couldn’t run or even walk in a straight line unless I looked down at my feet most of the time. Hiking the desert needed concentration. 
I did, though, get used to the situation and only in 2015, when my hearing suddenly became bad, was my AN diagnosed.  From research I already suspected that’s what I had though – it wasn’t a surprise.
I did fear in fall 2015 that I’d need treatment - I had read accounts on ANA and also BANA.  But I didn’t and year-on-year since then my tumor has remained around 14mm, about half an inch, measured at annual MRI scans. Over the years since I’ve gotten more used to my symptoms and some have even become much less noticeable.  I’ve been lucky but I’ve read loads of accounts from others less so.
With little to contribute I pulled away from ANA but I remain a member of BANA, the Brit. acoustic neuroma association.  I found experiences there are more relevant for me and things in the US can look very different.
Nonetheless a tumor is a tumor wherever we live and I hope my experience may encourage sufferers beginning their own acoustic neuroma journeys. I really do hope their experiences will be no more difficult than my own.

Thanks, James123! for posting about your successful surgery.  It is very encouraging for others to hear of good results.  Drs. Friedman and Schwartz have an excellent reputation at UCSD.

If you don't mind posting again on your recovery, say, 3 months and/or 6 months out.  Again, it can be a great encouragement for those who are facing treatment and don't know what to expect.

Best wishes on your continued recovery!
Don

The issue may be the approach.  There are a couple different approaches for AN surgery.  Each neurosurgeon is going to want to do the approach that they are the most comfortable with, not necessarily the one that provides the best option for hearing preservation.   You mentioned no balance issues, but other than tinnitus, what is your hearing level right now in that ear?  I ask that because I had very little hearing in my left ear before surgery, and I'm now single side deaf but honestly feel like I can actually hear better because the tinnitus has gone away and so there is less distortion in the background.  So hearing preservation isn't as important as you might think if your hearing is poor anyway.  On the other hand, if you still have most of your hearing in that ear, it might be more of a concern.  I was one that thought hearing preservation was a top priority beforehand.  And I was a little disappointed that it didn't work out for me (in spite of the surgeon saying they preserved the nerve).   It if I had known I could feel this much better, and actually have less distortion without the bad ear, I wouldn't have put so much value on hearing preservation in the first place.

You know I did put in a referral to speak to Kevin Brown! I do like Duke and they are the first group to be a higher volume. But I do agree getting another high volume group comment would put my minds questions at ease.

I went ahead and put in phone consults with House and UNSD as well. Thank you both.

Hi everyone,

I posted once or twice over the last 6 months looking for advice. I promised myself I would provide information post surgery to help others looking for help.

I had Middle Fossa at UCSD (San Diego, California) with Drs. Friedman and Schwartz in September. I’m now 22 days post op and I can report that everything went extremely well. My AN was 1.3cm and the surgeons managed to remove the tumor while saving my facial and hearing nerves. My hearing is a little worse than it was prior to surgery but I can still hear in both ears! The surgeons were absolutely amazing, as well as the whole medical team at UCSD. I have dizziness but I’m walking normally and around 2-3 miles a day. If you are able, and UCSD is in network, I would recommend at least considering UCSD for surgery if you need it. Dr. Friedman is such a nice human being and he genuinely cares about each of his patients. He gave me complete reassurance and support the whole time. I have a four-year old daughter so I asked Dr. Friedman if it would be possible to not shave my hair so I could hide the incision. I woke up with all of my hair and have been able to hide the incision from her the whole time (for reference, I have medium length hair for a male).

I’m recovering well and look forward to returning to work in the coming weeks. I know unfortunate outcomes are a possibility (as with everything in life) but I wanted to share with you that very positive outcomes are possible too (especially with experienced surgeons). I believe Friedman and Schwartz have done about 3000 of these surgeries in their career. They do all three surgery types (Middle Fossa, retrosigmoid, translab) regularly and, unlike many places, are able to pick the best surgery for your particular tumor size and location. I think in general, people post looking for help and because they’re struggling (understandably), but as a result we tend to hear only negative stories. I hope my story helps people! You’ve got this!

By the way, Dr. Friedman at UCSD will do free phone consultations. You’re able to send the MRI information electronically and he’ll call you and talk through your options. I think most places require you to have your consult in person, which isn’t ideal if you don’t live locally.