Yesterday I went for a consult at a Cyberknife facility. The Doc said they don’t treat AVM’s at their facility. Also, she said my AVM in her opinion was to large for Cyberknife and that the success rate of getting rid of it would only be 40%. It looks like I will have to set up for the embolization/surgery option. I also had a Gamma Knife consult a few weeks ago, and was totally turned off by the placement of the halo. I don’t think I could go through with it. Any advise or experiences out there?
Getting rid of my AVM took surgeries, embolizations and cyberknife. The embos might be able to shrink your avm to the size where they could use cyberknife on it. If that facility doesn’t treat AVMs - do your research and go elsewhere. Talk to your neuros re: your options and review all your options. If you’re located near NYC, Columbia Presbyterian is the place to go!
By the way, the halo may seen intimidating, but I think it didn’t really hurt going in or out, and it is essential in holding your head in place for the cyberknife. I think it was more painful for my mom, as it made her cry.
I straight out had a craniotomy (emergency situation) and have no experience with Cyberknife, etc. I second Jenny’s comment about finding a doctor who is knowledgable and experienced with AVMs. Good luck!
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I looked online for the best neurosurgen in my area (Boston) and then followed his advise. Truthfully, Kara…it’s all we can do and believe in the best neurosurgen we can find. Hang in there! Having a halo isn’t bad…it just looks bad. Hand in there and let us know how you are doing!
Hi Kara, I had Gamma a week ago. It was more uncomfortable than painful not bad at all. Mine was about the same size as yours by the sounds, 1 sq inch. The GK treatment lasted 1 hr. I was recommended Cyber-knife at first by another team and they were confident it would work however I opted for gamma because of its longer history and proven success rate. I wish you the best for your decision.
I had cyberknife a week and a half ago ago. The first week after was a little rough but each day I am gaining back strenghth. Tried the embolization first, but the I have a lot of small cappelaries involved so that was not a success. Due to other medical issues, cyberknife was my only other option. Now it is a waitng game to see if it worked. I believe I will get my first MRI/MRA in six months to see if there has been a change. I had several opinions before I had the treatment and they all agreed that cyberknife was my only option. I then chose the doctor that I felt had the most experience and had a great bed side manner. Good luck to you and on your decision…
I have a very large AVM also, I had Gamma-knife done when I was 16 and It did nothing to my AVM but shrink a tiny and I mean tiny bit, or make my life any better I now ended up with severe migraines and It made my left side even weaker. I just joined so if you need someone to talk to I know I do please I am always here.
If you mean the halo is that metal disk, it’s not as bad as it seems. I know the drill four holes in the head to bolt it on. You should ask a lot of people on this site, because that was the method I used in 1989. I think other places might do it without the bolts. This is a good place to find out what will work.
If it’s so big you’ll need the surgery, then talk to everyone hear to find a good surgeon. I had a good one, but he’s retired.
I had surgery first, then gamma knife. That cyberknife had not been invented back then.