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61
Microsurgical Options / Experience Johns Hopkins
« Last post by James123! on May 20, 2026, 01:35:40 PM »
Hi everyone,

I was recently diagnosed with a 1.3 cm acoustic neuroma. I have mild hearing loss in the left ear. I was wondering if people had experience with Johns Hopkins and in particular the surgeon Dr. Chris Jackson who I may be working with?

Thanks!
62
Microsurgical Options / Re: Anyone has had translab + cochlear implant?
« Last post by jazajcd on May 18, 2026, 11:43:49 AM »
Hi, I am 52yo with a vestibular schwannoma in the right ear that is 1.6 x 0.8 x 0.5 cm. My word clarity in that ear has guone from 100% to 44% in the past 6 months. I am scheduled to have a translabyrinthe surgery with placement of a cochlear 'dummy'. What I am wondering is if that is the same thing people are tallking about when they say they got a translabyrinthe surgery with cochlear implant? My doctor said that he would place the electrode so that things wouldn't scar over and then I would have to come back in a later date to have everything else done at a later date. If I remember correctly it would be about 6 months. Is that what ya'll are talking about?

Thanks so much for any and all information you have.
63
Post-Treatment / Yr 8 update CK
« Last post by mwatto on May 18, 2026, 03:06:45 AM »
Just had my annual MRI and all going well - AN has shrunk yet again now at 10 mm so basically has reduced by more than half.  :) Hearing stable as yet no hearing aid. I still get nerve pain from time to time but not as bad- the specialist said " to be epected". Unsure if from shrinking or what- seems to come and go at night.
64
Post-Treatment / Re: 1 year post -op
« Last post by DanFouratt on May 16, 2026, 01:27:18 PM »
Also, thank for sharing a positive experience. 

Dan
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Post-Treatment / Re: 1 year post -op
« Last post by DanFouratt on May 16, 2026, 01:24:43 PM »
Mark,

Congrats it sounds like things are going great for you.  I too have accepted my SSD.  It is now a game when we goo out in a group, "Dan where do we sit?" I have not had a bad seat in the house in years! Stay well and continue to enjoy life.

Dan
66
Inquiries / Re: UCSD (Friedman) vs Mt Sinai (Bederson) vs NYU (Golfinos)
« Last post by sjdicapua on May 15, 2026, 06:15:34 AM »
I know this is an old post but who did you decide to go with?
67
Eye Issues / Re: Double Vision following surgery
« Last post by Mark F. on May 14, 2026, 10:41:27 AM »
I know this is an old thread, but if you are still checking out the site Cheryl.  I have some experience with that.   It may not be exactly what you want to hear.  Immediately following my surgery I had side by side double vision all the time for several weeks.  I wore an eyepatch over one eye when I was reading or watching TV because then I only saw one image instead of two.   Now total disclosure, I had double vision for 2 weeks about a month before my surgery that resolved itself, but after surgery it lasted much longer all the time.   I say all the time because I am one year post op now and I actually still have instances of double vision though not everyday and not for long periods of time.   It comes and goes.  The positives of my surgery far outweigh the negatives so I hesitated to respond because I don't want to make anyone change their mind.  Overall I couldn't be more pleased with my progress. 
68
Post-Treatment / 1 year post -op
« Last post by Mark F. on May 13, 2026, 08:04:19 PM »
Just updating.  Today 5/13/2026 marks one year post-op for me.  Things have gone very well for me this past year.  I quickly regained balance, dizziness is gone, headaches which used to be a 24 hour a day thing are now only occasional and a lot milder than before.  I used to think that regaining my hearing would be important, well I am single side deaf, and I can honestly say it doesn't bother me.  If I had known how much better I would feel I wouldn't have placed such a high value on hearing out of the left side again.   I even set a new personal best 5k time this past year, since I no longer have balance issues.   This past year since my surgery has actually been the best year I've had in a long time.   I hope it continues, and that the tumor is truly gone forever now.   Thank you to all my friends on here for being there when things were very dark.   I really wonder sometimes how people without a support system make it through mental health wise.   

69
Post-Treatment / anyone get back to skiing, surfing, or golf after AN surgery? or other sports?
« Last post by oceanman55 on May 06, 2026, 12:30:49 PM »
Hi everyone. I was diagnosed with a right sided 4x4x3mm intracanicular AN at age 38. it'll be 2 years this summer(2026). So far, I'm in the watch and wait brigade but I know this could change at anytime. One big reason I am delaying  surgery would be to enjoy just a little more time either on the mountain or ocean. Downhill skiing is especially my jam. Talked to Dr Slattery down at UCSD and if we move on surgery, it would be the midfossa approach. so far my only symptoms are mild hearing loss and annoying tinnitus. if/when the balance goes, so does the neuroma.

I know for many the surgery if life changing in many ways. for those that are psotop, has anyone been able to get back into sports like surfing, skiing, or golf?   if so, was it at a similar level as preop? any specific challenges or new limitations?


thanks
70
Post-Treatment / Re: 2.5 Year Update
« Last post by Mark F. on April 28, 2026, 03:38:42 PM »
Michelle, Glad to hear you have been pain free.   
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