Author Topic: Cyber Knife questions  (Read 929 times)

ANviolist

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Cyber Knife questions
« on: August 01, 2022, 10:36:59 pm »
Hello, I’m working on options to deal with my 1.4cm AN. Based on a lot of reading I’m leaning strongly to Cyber Knife treatment. I’m wondering about a few things:
With CK, is a doctor’s experience as important as with surgery, or is it a more cut-and-dried geometric solution?
Are there experienced CK docs who offer consultations? So far, all the AN centers I’ve found that offer consults are run by surgeons, and I’m sending that surgeons push hard for surgery.

Thanks for any help.

skier

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Re: Cyber Knife questions
« Reply #1 on: August 02, 2022, 01:27:24 pm »
Hi,

You might find tomorrow's virtual support group with Palo Alto group, led by Dr Steven Chang, of interest: https://www.anausa.org/programs/support-groups/upcoming-events/eventdetail/1323/-/palo-alto-ca-ana-virtual-support-group-meeting





donjehle

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Re: Cyber Knife questions
« Reply #2 on: August 05, 2022, 03:11:46 pm »
Hi ANviolist!

Thanks for posting on the forums!

I commend you for doing a lot of reading.  That is SO important while making a decision.  I would also recommend you watching some of the ANA videos, especially on radiosurgery (CyberKnife or Gamma Knife).  I think you will see that there are specialists who specialize in CK or GK.  And there are many surgeons who do both and recommend both.  But there are some, as you have experienced, who primarily do surgery or radiosurgery and recommend whatever they do.

But you are correct: a doctor's experience is critical!  That's why we should never go to the closest doctor who claims to treat acoustic neuromas without first checking on how much experience they have.  Some people like to tell horror stories of a certain approach when the truth is that their doctor did not have much experience with that procedure.  If the neurosurgeon mainly does surgery, he/she may not be skilled in CK or GK.  And then they might not do as well.  That would be like someone asking you to play a brass instrument.  You know how to read music and you understand music theory, but you might not be as skilled on that instrument as your own.

There are CyberKnife doctors who primarily do CyberKnife treatments, and the information they share can be very different from what you have heard so far.  I would check out both opinions, if I were you.  If you scan through the videos on the ANA website, you will learn of specialists who promote radiosurgery and who give a different perspective.  They will do consults, and some of them may be free.

Best wishes on your research!
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.

notaclone13

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Re: Cyber Knife questions
« Reply #3 on: August 09, 2022, 03:42:16 pm »
A friend of mine traveled cross country to Stanford to get CK treatment by Dr. Chang. His AN was of similar size to yours. He’s was trying to avoid hearing loss because he already had major hearing loss in both ears. He’s had no side effects except to be honest, he has lost more hearing in his AN ear. A lot depends on whether your AN is close to the cochlea. Mine was virtually touching my cochlea and 3 months after Linac radiation, my hearing when from bad to non existent. My ENT told me not to chose CK based on retaining my hearing because in his experience there’s no guarantee.

 


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