Replies to This Discussion

Permalink Reply by kevin matthews on November 16, 2011 at 6:32am

There has been a lot of discussion about this over the last few years.
My personal experience is, after my Gamma Knife in 2002 I still had seizures as before but as the AVM was sealing over time, 2 years, my medication had to be adjusted in line with my seizure activity. After a lot of "trial and error" I am now hopefully on the right meds for me, Lamictal and Keppra. Which I will have to take always?
Although my AVM is now obliterated the site of the brain AVM is scarred by the radiotherapy. This is only my personal experience some AVM that are sealed cause no epilepsy or other side effects so I don't want to scare you.
Yes the radiosurgery seals the AVM by stopping blood flow to the site of the AVM stopping any flow though it, same as a clip would in surgery.
Have a look as the IRSA site, and there are many others.
Hope this helps
Kevin

Permalink Reply by Carrie A. Neff on November 16, 2011 at 9:58am

Wanted to tell you my experience really quickly: I had Gamma Knife 4 months ago for an AVM in my right thalmus. The way all of the neurosurgeons explained it to me is that the radiation causes the cells on the inner lining of your problematic vessels to slowly replicate, which wil - in time - close off those vessels and divert the blood flow to other places. I believe the side effects come when the radiation has also affected the cells surrounding the vessel it was targeting where those cells, causing swelling. I have yet to experience any side effects from my Gamma Knife, however, each experience is completely different based on the location and size of what they're targeting, as well as the dose of radiation. Since my AVM is deep in my brain, they couldn't use as high a dose as they would have used for something that was more towards the surface. They try to find the perfect dose for each patient, one that is strong enough to cause the inner vessel lining cells to replicate (closing off the AVM eventually) and not too strong that will cause damange to surrounding tissue. It's tricky though, because as you lower the dose and maximize safety, you also minimize effectiveness.

I go for my next follow-up in Jnauary which will be my 6 months, so I can definitely post any updates at that time! :)

Permalink Reply by liepa3 on November 16, 2011 at 5:18pm

Hi Carrie, my husbands AVM is also in the thalamus, or actually not so sure because docs say the AVM is partially in Brain stem but the bleed was in Thalamus. However it also means that it's very deep, same as yours. Have to discuss with the docs again I think because I'm getting more and more questions in my head, but surgeons always seem in hurry so we can't have a proper discussion.
Anyways I hope all goes well with you and keep us reported about further treatments and your condition.

Permalink Reply by Linda on March 14, 2012 at 5:11pm

Hi, how did your follow in January go? Have you suffered any side effects since then? Would be really interested to hear how you are now. Linda

Permalink Reply by Lars on November 16, 2011 at 8:24pm

I had my operation 1 year a go too.
The operation have not given me any problems yet.
But like Kevin say: It is important that they follow up with the right medicine and dose.

I have gone to the ground 2 times the last 2 months (Sep. and Oct.) and been taken to the hospital in a hurry with the ambulance.
Even so the nevro doc. have not seen me and I have just been sendt home again a few hours later when I was back on my feet. (Had same symtons as drip/brain stroke for a short time.)
Even so the nevro doc. have not given me a apointment before the 15. of December.
That made me angry and I felt bad 15 minutes after each time I took the medicine they had not re-adjust since before I got operated.

So a few week a go I stoped taking the medicine on my own and first after that I felt I was really recovering after my 2. insidents.
I will not recomend any to not follow the doc. orders.
I only want to say how important it is that they follow up on the medicine dose when they should.

I will also have my second MR-scan after the operation now in December and will mabe at that point see what actually have happened lately, giving me the Stroke/drip symtons 2 times.

I am affraid I may have had atleast 1 drip because of over medication.

Permalink Reply by Lars on February 3, 2012 at 4:12pm

I now had a check-up again about 2 weeks ago and got very scary news.
The doc told me that they had seen much radiation damage on my left part of the brain and for the moment they do not know what the consequenses will lead to.

Permalink Reply by liepa3 on February 3, 2012 at 4:33pm

Oh, That is really scary news, I hope things go well with you. Just stay positive!

Permalink Reply by Linda on February 3, 2012 at 5:21pm

I wish you well and will include you in my prayers.

Permalink Reply by Linda on February 3, 2012 at 5:20pm

I have just looked on the IRSA website as suggested by Kevin and found it really useful in answering all the questions I have been seeking answers to. The site is IRSA.org and it really explains a lot I hope you find find it helpful, Linda

Permalink Reply by liepa3 on February 3, 2012 at 6:45pm

Thanks Linda, I haven't come accross this website before :) Will read it in near future

Permalink Reply by Gwen on April 2, 2012 at 9:43pm

Hello,
I had gamma in October 2005 and never experienced any problems post surgery. If I had to go back and do it again I would absolutely do gamma again. I have no regrets.
Gamma isolates the AVM so no blood flow enters or exits the site of the AVM. Moreover, nothing enters or exits the site of the AVM.
Hope this helps.
gwen