Some left

Hey I am a 19 year old male and had AVM removal surgery the day before Thanksgiving 2012. I went in for a cerebral angio. on July 5th and they found that they did not get all of the AVM during my first surgery. Doctor mentioned radiation treatment as one option or another (I have had 2) emboloization with or without surgery. I asked about leaving it and he said we could but it would eventually re-reputure - my original rupture was on Aug. 22, 2012.

Does anyone know anything about the radiation - the Dr. mentioned 3-4 years of treatment - ie - how far apart, success ?? Also Has anyone had to have more removed after the first initial surgery and if so what outcome did you experience.

I only have short term memory loss now and am wondering if that could get worse or if I could have other problems after a 2nd surgery.

Thanks Rupert

Hi Rupert,
I just had my consult for Gamma Knife surgery on July 4, 2013. Originally I was looking at multiple embolizations for my AVM but due to how deep it is, my NS is advising the safer route is radiation treatment.
My consult advised 1 shot of radiation that last for 3 years to continue shrinking the AVM with the goal of it to be gone by the end. It is day surgery, I will have a CT scan & MRI with an angiogram in the am & then have the Gamma Knife surgery.
My consult explained that they put all 3 of these images together so the Radio Surgeon knows where to line the Radiation up to hit the pocket of the AVM from the outside of my head.
They give local freezing in my forehead as they have to put my head in a halo device to keep it still for the laser treatment. They then monitor my AVM shrinking over 3 years with MRI’s.
If its not gone by the end, ill need 1 more treatment of radiation or 1 embolization surgery to close the rest.
I thought what you did, that I would need multiple radiation treatments over 3-4 years until last week. I am in Canada & being treated in Toronto Western Hospital that has an AVM clinic.
I am still waiting for another call from the Radio Surgeon himself to fun out all the side effects. I do know one side effect can be Adema on the brain, but do not know the precentage or anyone who has had the surgery.
I hope I have helped a bit.
Good luck with your journey!
Thoughts & prayers are with you and these difficult decisions we have to make.

You may wish to join this sub-group…http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

Hi Rupert, If I read your profile right. Rupert is your dad, right? Not that it matters, I'm just curious (smiling).

I had the G.K. done and Fishbowl explained it very well. That is how the procedure is done. The radiation stays active in your body for three years. During that time, they will monitor the avm by doing MRI's. If it is not all obliviated after that time, they most likely will do another G.K. I don't how big (or small) your's is but, the smaller ones are usually all gone with one treatment. Most people have very little to zero side effects. For those who do, the most common is seizures and they can be controlled with medicine... For those who get them, that is.

I did have a major headache from the halo they had put on me but, that went away in a day or two. I was back to work a week later with no problems.

I hope this helps you. You are too young to have these problems and the worries that come with it. I've been in your shoes at the exact age that you are now. For me, it was from a concussion back then (1981). I was in a coma for a few days and I completely lost my short term memory for about 4 months. And a few other things till I recovered. Then it slowly got better.... Faith and the support of my family and friends is what got me through it (smiles).

Ben

Nope Rupert is me :D It's a nickname - my real name is Nathan :D