Author Topic: Boston area - VS medical care and radiosurgery expertise  (Read 2685 times)

skier

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Boston area - VS medical care and radiosurgery expertise
« on: November 21, 2021, 08:47:37 am »
Hi,
I'm newly diagnosed with a small, but symptom-causing, VS. (Tinnitus, hearing loss, balance issues (slight) and facial muscle twitches/small spasms.)

I also still need the correct MRI, as the first one was ordered with wrong details.

I am scared of surgery (of course), but I have not ruled it out.

It is so hard to judge all the medical details without a medical degree, or even the right information. The first two ENTs I have consulted had opposing opinions, and neither inspired my absolute trust. It is a VS, but that's all they agree on.

I'm north of Boston, but I am looking for who to see who can fairly help me judge between surgical and radiation-based options.

Do people recommend Mass Eye and Ear? (Is that part of MGH? It's so confusing)

Do people recommend U Mass Medical in Worcester?

Do you have an MD expert or radiosurgery facility that you recommend?

Thank you. Sorry to sound... anxious. Is there another way to feel? I'm 63, healthy, but suffering daily from this, and it is not likely, to me, that I want to wait and watch 6 months, having missed the diagnosis for almost 2 years already.

Thanks!

lawprof

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Re: Boston area - VS medical care and radiosurgery expertise
« Reply #1 on: November 23, 2021, 01:06:17 pm »
Hi there!
I was also recently diagnosed and looking for care in Boston. I just had a great telemedicine visit with Dr. Wenya Linda Bi at the Brigham. She was really good about explaining the different options and pros and cons of treatments vs monitoring. I also liked that she recommended another scan in 3 months rather than 6. If you Google her, there are a few videos she has online, including a webinar where she goes in depth on ANs and treatment.
I also had a recommendation for Dr. Fred Barker at MGH (he’s a neurosurgeon with an interdisciplinary practice that coordinates with Mass Eye and Ear). He’s been harder to get an appointment with, even with some help through a colleague.
I also set up a phone consult with UC San Diego and their process was really easy if you want more opinions.
Hope this helps!

donjehle

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Re: Boston area - VS medical care and radiosurgery expertise
« Reply #2 on: March 15, 2022, 02:37:21 pm »
Hey, skier!

How did your consult in Boston go last week?  Did you decide on a treatment plan?

I'm anxiously waiting to hear the rest of your story so far! 

Please keep us posted on your progress!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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