Author Topic: Seeking advice for finding surgical teams  (Read 134 times)

TWMD

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Seeking advice for finding surgical teams
« on: April 08, 2024, 11:34:22 am »
Hi. My daughter who is in her mid 20s was just discovered (via MRI) to have a 27x29x25mm tumor that radiologist and a neurosugeon have said is most likely a VS. I'm trying to identify other doctors to consult. She's currently in Atlanta, and has spoken to a neurosurgeon (Jeffery Olson) at Emory (and will talk to a neuro ENT there this week), since that's where she lives and where her MRI was done. She has a video appointment with Henry Brem at Hopkins later this week, and we've requested a consult with Friedman/Schwartz team at UCSD. At first Hopkins seemed  most convenient since we live nearby and she could recover from surgery with us, but after reading the forums, it sound like it's not critical to be close by the surgery location for the recovery period. So we're really open to other suggestions of teams/hospitals.  She already has severe hearing loss in one ear, but no other symptoms. Where/who else should we consider? Mayo? Other east coast/mid-atlantic area hospitals? Thanks in advance for any advice.

DanFouratt

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Re: Seeking advice for finding surgical teams
« Reply #1 on: April 09, 2024, 09:25:51 am »

March 3, 2024 there was a presentation about high volume facilities put on by UCSD. You may find this helpful in your search.

I decided on the radiation treatment but had a surgeon identified.  I spoke with several surgeons across the country.  They all asked who mine was.  When I told them Dr. Brown of UNC without hesitation they said I was in great hands.  He has done these before like the presentation said is a good thing.

Good Luck on your decision journey.

Dan

Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

donjehle

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Re: Seeking advice for finding surgical teams
« Reply #2 on: April 14, 2024, 06:50:44 pm »
I had my second MRI and initial consultation at Emory.  They have a good reputation.  I sought out a second opinion at the Mayo Clinic as I highly respect the acoustic neuroma team they have there.  The Mayo Clinic offers a video consultation at no charge -- so it does not hurt to touch base with them.  In my case, the doctors at Mayo completely agreed with what the doctor at Emory told me.  And that gave me a lot of comfort knowing everyone was in harmony.

Best wishes for your daughter as she continues along this journey!
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.