Stereotactic radiosurgery 3 stage treatment - any one else had this?

General
1

Hi Guys,
Would really appreciate anyones help on this ...
in brief (not so brief after re-reading - sorry guys!!) my partner has a very large avm of the brain (left parietal occipital).
When diagnosed he was told it was inoperaple, after much fighting we managed to find that he may be suitable for stereotactic radiosurgery (STRS).
We only managed to push this due to garys age - 26 - the fact that we have a young family and that im expecting, and the fact that the neurosurgeon told gary there was a 99% chance of a bleed in his lifetime.
However because of the size of his AVM they decided that it would be best to split the AVM into 3 parts (not literally) and give each part a dose of radiation 6 weeks apart. With the likely possibility of more radiation in 3 years time.
Gary has had side effects with severe head pain and vision loss, worse than his presenting symptoms previous to diagnosis - which were very bad anyway.
From what the doctors say it seems like they are treating him as some sort of experiment, they dont really know what to expect, or whats going on. The doctors have very little information about his symptoms and side effects and we are really struggling to get appointments with his consultant in the London Hospital. (His treatment is done in sheffield - we live in sussex 5 hours away from sheffield & an hour from london) Due to having no choice but NHS treatment trying to get an appointment is not easy staff overworked and dont have tim e for us etc.

What i wondered was if anyone else has a similar size position AVM? Or if they have undergone a 3 phase STRS treatment?
If you had suffered side effects?
We are getting very frustrated with the lack of knowledge from doctors and it would be good to speak to someone who has/is suffering with the same AVM issues.

Thank you for taking time to read this and Thank you even more to those of you who take time out to reply. Anybodys help/advice/story would be greatly appreciated. We dont know where alse to turn at the moment.
Best wishes
Kayleigh and Gary x x

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My AVM was in my left parietal lobe, too far back to do surgery. Therefore, my only chose was Proton Beam Radiation. It takes longer having radiation, but it does work! Stay Strong and Stay Positive!

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KaynGaz, try the Radiosurgery Group (http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother). Look at past discussions and see what information is there. Best wishes!

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My AVM is right parietal. It was about 6 cm.

I had a 3 phase Gamma Knife treatment, but my treatments were 6 months apart, not 6 weeks. They were in June 2011, December 2011, and July 2012. I'm supposed to go back next summer for an MRI and in two years for an angiogram to see what is left.

I did ok after the first 2 GK treatments, but had nearly 2 weeks of ugly headaches after the third GK. My surgeon doesn't feel that it had anything to do with the GK treatment, though.

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Hi Kayleigh. How is Gary doing? We have spoken b4 i think..i have a large AVM (approx 6cm) in the same area as Gary but on the right not the left. I had 4 embolisations, followed by 2 lots of Gamma and a further lot of Gamma after I had my 3rd bleed. Have had several follow ups and the AVM significantly smaller although still there.I still get daily headaches, some intermittant loss of feeling/movement in my left side and had some sight issues previously. Ive tried numerous drugs/injections etc. Actually found that a GAMMACORE machine helped with the pain but its v expensive and i couldnt get funding for it. Ive now started alternative therapies and it has helped a lot. What kind of problems is Gary experiencing? Sarah xx