hello everyone. I was diagnosed with an unruptured AVM after an incidental CAT scan. After I had my MRI and angiogram my doctor advised me not to have an open surgery because the AVM was located deep in my left temporal lobe and opening up the brain to get it might pose neurological deficits to me. He said he wouldn't embolize it alone because further complication can set in due to it's size (6cm). He mentioned there was a procedure that could be done using radiation(not the normal one though) where they would do it in phases, I forgat the exact name of it. He said it was still in testing and there's still a 50/75% cure rate.
He advised me to just monitor the AVM at this point. My question is, would just embolizing it have negative side effects and what is the name of the radiation procedure he was talking about? Thanks.
Depending on the size location and complexity of your AVM your doctor may be concerned about a stroke with embolizing or resection. The vessles that need to glued off may also be to difficult to get to via embo. There are a few different types of radiation procedures but Gamma-Knife and Cyberknife are the most common. It sounds like your doctor is recommending Cyberknife because that is the newest technology. I was recommended cyberknife also but after some research I chose Gammaknife because it been around much longer with a proven track record. However I think Cyberknife is good also and so do many doctors.
Radiation surgery closes off the AVM gradually over time thus more genital on your brain to re route the blood vessles over time. Most say 3 to 5 years depending on size. I had a 3.5cm AVM and it was obliterated in just 12 months.. Hope that helps.
hello Brett, does Gamma Knife work as a one time procedure or can you do it multiple times? Considering the size of my AVM I'm sure I would need more than one procedure. Did you get yours embolized first and how are you feeling since the surgery?
I had some pretty bad swelling 12 months and had to go on steroids however I would do the same thing if I had to do it again. If I had a small avm I may do CK. I get the occasional mild headache now and when I do I feel a little spaced out, but I had that before leading up to the procedure anyway.. You can do both either GK or CK in staged sessions or in one time. However I think GK can do lager AVM's in less stages than CK can because the GK has 201 beams vs. just 1 with CK. But again it all depends on the structure. If your AVM is tight and compact you will have a better chance at less staging, if your AVM is spread out like a spider web chances are you will need multiple sessions and or other options combined such as embo.. Just make sure you get a good doc experienced with AVM's..
No embo for me just 1 time GK
Will, I also had an AVM deep in my brain, same location, Left Temporal Lobe. I believe there is more than one type of radiation. I had Proton Beam Radiation at Massachusetts General Hospital. Discuss this with your neurosurgen and ask him where in your location is there a radiation treatment. Good luck and keep in touch!
Louisa I believe that may have been what my doctor was talking about. How big was your AVM and how is everything now?
Is it possible that the doctor was referring to a NovalisTX treatment? I believe the term my doctor used was fractionated radiation but I am not positive. It is relatively new and reduces the chance of damage to surrounding areas. It looks like there are a couple of locations in the NY area using this equipment. The NovalisTX machine can actually outlines the shape of your AVM. I researched it at http://www.novalis-radiosurgery.com before electing to have the procedure. It explains it pretty well. It would be worth a call to your doctor to get the exact name of the procedure he recommends so that you can do some research to see if it sounds right for you.
hi Stefanie, I will ask my doctor what the procedure was. I will also inquire about the treatment you mentioned. Thank you.
Hi Will, My AVM was also huge located in the left temporal lobe and unable to be treated with a cranitomy, like you I would result with severe neurological deficits. My AVM was 5 cm to start, a grade 5 on the good 'ol AVM scale (cant think of the acutal name). I was to have 4 embolizations after he did the first 2 they didnt want to risk my life and risk damage anything with going into the AVM more. So then I had Gamma knife treatments. I had my first one in June 2007 waited over 3 yrs had hardly a change and had my 2nd treatment November 2010. There is a possible 3rd in my future. As of my 1 yr post gamma mri there is NO change. Best of luck to you this is def a scary time and its a consist worry for us and our families. Keep us posted. Hope you find out for sure what exact radiation yout Dr has mentioned!! Prayers :)
Hey whats up Will
I am Pretty sure you are talkin about the Gamma Knife but I am not sure that is the procedure I under went mine is deep in the left frontal lobe aswell I went to johnHopkins in Baltimore for a second opinion from Judy Huang although I could not afford to get a procedure there it was worth spending the money there for an opinion from the top specialist when it comes to AVMs I realize you are at great risk and it may be hard to make a decision on what you should do. As far as embolization goes the hospital was unsuccessful at embolizing my AVM. I do know that they usually like to imbolize it before they continue with any other procedure embolizing it will prevent you from having a brain bleed which can be fatal or cause brain damage. I know that when they do embolize the AVM it prevents blood from flowing to that area. So when the embolization happens the pressure of blood flow changes in your head. I can not tell you any negative side effects but I can tell you that you are better off gettin embolization then risking a brain bleed. Hope you make it through.
My avm was not a good candidate for surgical removal so my Neuro did two embolizations followed by LINAC stereotactic radiation. It will be 3 years this Sept since my radiation and it is continuing to shrink! :)
I feel great. No symptoms.
i could not have open surgery, embolising etc (left side) - so the only option for me was GKR. I had 2 doses over about....8 years now, had 90% removed. Had no bad side effects on the treatment.
I spoke to my doctor and he told me it was Gamma Knife but since my AVM is big (6.6cm) the cure rate goes down and it's possible that the AVM can't be cured period.
@Barbara, thanks I will check that out.
hey Rich how big was the AVM?
and did you have any symptoms before and after the radiation?
hmmm, thats like saying "how long is a peice of string" lol mind was...well, big!
like i said i had no side effects, AFAIK anyway. No headache from it, or swelling.