Author Topic: Thoughts regarding best gamma knife centers in the US  (Read 1418 times)

newtoANworld

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Thoughts regarding best gamma knife centers in the US
« on: December 31, 2022, 10:58:24 am »
Hi all.  I was wondering which are the best (high-volume) gamma knife centers in the US?  I've seen some older posts on the topic but nothing very recent.  Was just diagnosed in November with a 1.5 cm AN and the doctors recommended gamma knife if the tumor is growing (currently on watch and wait for 3- 6 months). 

Calellen

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Re: Thoughts regarding best gamma knife centers in the US
« Reply #1 on: January 02, 2023, 08:55:35 am »
I would like to know as well. I’ve been on W&W for a year and my tumor has grown more than expected so my neurosurgeon wants me to have radiation.  I live in Maine where Gamma Knife isn’t an option.

CA Marti

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Re: Thoughts regarding best gamma knife centers in the US
« Reply #2 on: January 02, 2023, 04:11:12 pm »
Hi newtoanworld,
     
     When I was diagnosed about a year and a half ago I did lots of research on this site and took many notes. I wrote down these places as I noticed many patients had good experiences with them:
Dr.Lunsford at Pittsburgh UPMC 1-800-533-8762
Dr.Sheehan at University of Virginia 434-924-8129
Dr.Chang and Soltys at Stanford for cyberknife 650-497-7777

I contacted by email all three. I met with Dr.Lunsford on a zoom meeting but had to fly to Virginia for an in person meeting with Dr.Sheehan because they said they didn’t do zoom meetings. I did have a good experience with him, though. He struck me as a very honest, caring, doctor who was very patient and knowledgeable. I liked the way he didn’t downplay any side effects of the gamma and was upfront about it. He didn’t pressure me into anything and recommended watch and wait for now.

Good luck with your search and prognosis.
Best wishes,
CA Marti
« Last Edit: January 02, 2023, 04:12:50 pm by CA Marti »
Marti


Diagnosed 5/28/2021 10.5mmX8.5mmX6mm
Next MRI   11/22/2021 10mmX8mmX6mm
MRI           12/9/2022   5mmX6mmX7mm

drumfest

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Re: Thoughts regarding best gamma knife centers in the US
« Reply #3 on: January 03, 2023, 02:57:30 pm »
CA Marti,  Thanks for that info!  I've been trying to research and write down all the GK experts as well and you spoke of Dr Lunsford & Chang, but I wasn't aware of Dr Sheehan so, much appreciated.  I know Dr Michael Brisman did an ANA video all about GK and he seems knowledgeable.  I'm still in W&W status, but I have another MRI in April and if it's growing, I'm looking to have radio surgery sooner rather than later to improve my odds of hearing preservation.  I hope my AN shrinks like yours seems to be doing.

All the best!  D
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

skier

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Re: Thoughts regarding best gamma knife centers in the US
« Reply #4 on: January 03, 2023, 06:07:21 pm »
Hi,
I have an AN that was diagnosed in Oct 2021, and I'm also still in watch and wait mode. Like some others in this thread, I am leaning towards radiosurgery, with Cyberknife.

Hello to CalEllen. I'm in Northern New England, too. Don't forget to consider Boston or NYC area treatment options, if you can, as there are Gamma Knife and Cyberknife options there. Sometimes if your state doesn't have a particular treatment, you can get it covered by your insurance as a special case. (I'm not any kind of expert on insurance.)

I haven't seen a lot of information on this chatboard from recent patients in Boston for radiosurgery, though. Hope this thread gets some new info. for all of us! :)

Wishing all of you wellness this year, whatever that looks like you for you.

CA Marti

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Re: Thoughts regarding best gamma knife centers in the US
« Reply #5 on: January 04, 2023, 08:54:24 pm »
Drumfest, sure, no problem. I’m sure there are other centers that are great too, but these seemed to be the ones mentioned most often. I’m not positive, but I believe Dr.Sheehan studied under Dr.Lunsford. Technically according to my radiologists findings and my neurosurgeon my AN is “stable”, but I’m still happy with that finding. It was surprising to see the numbers getting smaller but according to the notes it’s “similar in size”. Best of luck to you, and hoping for stability and shrinkage for you.
Best Wishes,
CA Marti
Marti


Diagnosed 5/28/2021 10.5mmX8.5mmX6mm
Next MRI   11/22/2021 10mmX8mmX6mm
MRI           12/9/2022   5mmX6mmX7mm

donjehle

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Re: Thoughts regarding best gamma knife centers in the US
« Reply #6 on: January 06, 2023, 07:00:55 pm »
Thank you, newtoANworld and CalEllen, for making your first posts in the ANA Forums!  Welcome!

You posted a great question.  The recommendations from others on the forums certainly should be considered.  They have there.

The other thing I would recommend is watching the ANA videos, especially the ones on gamma knife (or radiation).  Sometimes, you can tell by watching a video of a practitioner whether you would feel comfortable with them or not.  The ANA invites some of the best in the country to do the videos.  Sometimes a person can feel drawn to a particular practitioner not only because of his/her knowledge and expertise with treating acoustic neuromas, but also because of the manner in which the expert answers questions and handles interactions with others.

You still may prefer to go with the recommendations of others on the forums (and I understand that), but it certainly would not hurt to watch the ANA videos of those chosen to present GK (or radiation) treatment options.

Best wishes with your 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.