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61
Cognitive/Emotional Issues / Re: Struggling with Emotional Rollercoaster After Acoustic Neuroma Surgery
« Last post by Director on February 27, 2025, 02:33:58 pm »
Dear zampone,

The symptoms, diagnosis, and treatment for acoustic neuroma can challenge patients’ cognitive and emotional states. The ANA has a publication, Understanding Emotional, Cognitive and Behavioral Changes, that you may find helpful, as well as support group meetings where you can discuss this topic with other patients.  We also have some helpful videos on our website.  Reach out to the ANA at volunteers@anausa.org for more information.

Best regards,
The ANA Team
62
Radiation / Radiosurgery / Re: Mass General or NYU for Radiation ?
« Last post by Abdullah85 on February 26, 2025, 11:39:56 pm »

Who is your Dr in Weill Cornell, and how was your experience ?

Tumor size & symptoms before and after ?
63
Inquiries / Re: vertigo
« Last post by Bufoeal on February 26, 2025, 07:36:55 pm »
Quote from: windingshores on February 08, 2025, 07:37:57 am
I  would like to know people's experience with vertigo.  I have had vertigo for 8 days now. It is usually diagnosed as "vestibular migraine' and seems weather related, but has never lasted longer than a few hours. Some spinning but mainly off balance.

I have posted before about facial pain/numbness, and tinnitus- all on left side- but hearing loss is symmetrical so otoneurologist did not want to do MRI.  PCP did order one recently.

I have kidney disease so have been dragging my heels on MRI.  Hoping 3T might be strong enough for ruling out AN w/out contrast. Or maybe I could have low dose contrast?
Vestibular migraines can definitely cause balance issues, and weather changes seem to trigger them for some people. It's good that your PCP ordered an MRI for further evaluation. Hopefully, it will provide some clarity. In the meantime, staying hydrated and managing stress might help with the symptoms.
64
Balance Issues / Re: Worsening fatigue after exercise
« Last post by kcollette on February 26, 2025, 07:33:23 pm »
Thank you! That’s helpful to know. I’ve been doing my vestibular PT again and getting out for long walks more and it seems to be helping at least somewhat. I was also just diagnosed with sleep apnea, so that might be a big part of my fatigue too.
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Radiation / Radiosurgery / Re: Mass General or NYU for Radiation ?
« Last post by JLR on February 26, 2025, 03:48:44 pm »
Hello, both are fabulous facilities.  I would decide based on the doctor. My dr is affiliated with Weill Cornell  in NYC. I have a friend who went to Mass General and had great care. Good luck. 
66
Radiation / Radiosurgery / Mass General or NYU for Radiation ?
« Last post by Abdullah85 on February 26, 2025, 11:23:24 am »

 Any advice ?
67
Hearing Issues / Re: Pitch Changes and Musicians
« Last post by Director on February 26, 2025, 11:18:57 am »
Dear ESH,

The ANA's Musician Support Group would be a great resource for you, and you can connect with the leader or through their Facebook group between meetings. Please reach out to volunteers@anausa.org for more information.

Best regards,
The ANA Team
68
Radiation / Radiosurgery / Re: Committing to Radiosurgery
« Last post by DanFouratt on February 25, 2025, 05:34:55 pm »
Congratulations on completing your decision journey. When I was going through the decision process I spoke with many professionals.  The single best advice was all decisions are right but when you make one, do not second guess yourself.  Make the decision you made work out best for you. Good luck and let us know how it turns out.

Dan
69
Radiation / Radiosurgery / Committing to Radiosurgery
« Last post by Stanislaus4048 on February 25, 2025, 12:59:44 pm »
Hi everyone,

After a long period of research and contemplation, I have decided to pursue radiosurgery (Gamma Knife) to treat my relatively small (1.2cm), but growing, AN.

As I'm sure was the case for many of you, this was a very difficult decision, especially as I'm still in my 30's. I think the hardest part is coming to terms with a future of SSD, with the only question being how long after treatment my hearing will hold out.

I was initially set on surgery (middle-fossa), but was given 50-50 odds of serviceable hearing preservation by UCSD, which I ultimately deemed unsatisfactory combined with the additional risks of open surgery. 

I do feel confident in the fact that radiosurgey has become increasingly common for AN management, especially for younger patients.

Anyway, just wanted to say hi, and thought I might feel better after writing some of this out. Best regards.
70
Hearing Issues / Re: Pitch Changes and Musicians
« Last post by ESH on February 25, 2025, 12:03:55 pm »
>>Hello :) I was wondering if anybody else has this weird symptom of about half tone difference in sound pitch. I discovered it by incident when moving the phone with "waiting signal" from ear to ear. My doctor said that it is not a common thing.<<

I have this problem. The name for it is diplacusis. It annoys the casual musician in me no end. Luckily, I play the piano, not the violin, and get the right sound if I hit the right key so others don't have to suffer when I practice or play. It does affect ear training exercises and the enjoyment of music and I occasionally wonder if, for purposes of music, I would be better off if I lost hearing completely in my right ear.

I wear a hearing aid for the right ear which helps with speech but does not help with the diplacusis at all. Sometimes the tinnitus in that right ear is particularly bad and, ironically, that is better for playing.

You have my sympathy.
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