After AVM embolizations, next step, radiation

My 2nd embo month ago for a Posterior Fascia, cer-ebellum AVM. My rt leg feels like there's a clot. I'm weak on my rt side. Rt hand shakes. My ears ring constantly. Brain isn't processing well, I have to retype everything. What's happening? Is this normal?

This is 2010. How do they do spot radiation? Do they still screw your head into a mask?

I think it depends on who is doing the treatment. Halos (with the screws in the head) are still used. Chari had that done in the early 90's at Mass General. About 8 yrs later, at Loma Linda, they used a bite block. You go to the dentist for an upper teeth mold. Within that mold, they secure about a 1/4 x 1/2 inch bar of steel. That bar is clamped to the machine, while a partial vaccuum seals the bite block to the roof of your mouth. Chari about gagged on her bite block, They finally modded it to insert a suction tube to remove saliva, which helped her.

Ron, KS

Thanks, Ron.

The other option I'm aware of is Cyberknife. Only requires mask molded to ur face is my understanding, no screws!:) My only concern with this is the fact that Cyberknife was 2nd or 3rd to the market for stereotactic radiation with Gamma Knife being the 'the original' and gold standard. Also, if I understand correctly, Cyberknife has only been approved for intracranial for a few years and was initially used only on lesions outside the brain. If I had the choice between the two, I would bite the bullet and try to tolerate the temporary halo screws simply b/c Gamma has the track record. Just my two cents....Best of luck! -GK


I'm not sure and didn't take time to research it, but in 1991, when Chari had radiation for her AVM, it was Proton Beam Radiation (using the halo & screws). We never heard of gamma knife or cyberknife until later. But I'm not smart enough to know what the differnces are.

Ron, KS

After a brief conversation with someone at Leksell, the makers of Gamma Knife, I have to apologize for my misinformation…Gamma and Cyber are NOT linear accellerators as I mentioned. The Gamma Knife(Leksell) linear accellerator is called Synergy. Again sorry for the misinformation. -GK

Greg K said:

Ron, like u, I don't know all the specifics, but I do know that LINAC, Gamma, and Cyberknife are all Linear Accellerators. Gamma knife is manufactured by Leksell and Accuray makes Cyberknife. I actually sold the headframes and screws for Leksell for a short time a couple of years ago and I can tell u the frame for gamma is more of a box shape with the top open so the doctor can attach an arch if doing a procedure like deep brain stimulation. Of course all these frames and screws are mri safe, b/c this how the surgeons map the lesion area, with coordinates based off the framing. I'm not as familar with the masks, but I do know there is a robotic element that I'm not sure gamma has. When I was contemplating radiation, Cyberknife seemed more favorable due to the multiple treatments they wanted to do(8-10). Accuray has been around since 1990, however, they initially marketed Cyberknife for lesions outside the head. I think the intracranial indication has come within the last several years? I want to say Gamma was the first linear accellerator, but I may be wrong? My experience with Leksell was strictly with the frames, screws and arches, so I don't know all the ins and outs about the actual radiation? Thanks for ur response Ron, I fully believe that back in '91 a halo or ring type frame may have been the standard of care. I enjoy reading ur reponses, as I know u searched high and low to treat Chari's avm:) Hope to chat sometime. -GK

Old post, but wanted to correct some misinformation I mentioned regarding Cyberknife. I recently returned from the RSNA (Radiological Society of North America)meeting in Chicago and had an opportunity to visit the Cyberknife/Accuray booth. Turns out CK WAS initially designed for intracranial lesions. It then expanded to parts outside the skull and currently their usage is 53% extra-cranial. Thought this was interesting, I picked up a sales brochure that I can scan and post if anyone is interested. -GK

Thanks, Greg! For extra-cranial use, is that mostly for tumors rather than avms?

Dancermom, I don't know the definite answer to that, but from what I saw I think they do mostly oncology work. GK