Staged treatment with gamma knife

Went to sheffield yesturday to see specialist, my only option is to have gamma knife in two halfs,because my avm is large.first treatment in 6weeks next in 3months, then fingers crossed hope it works.has anyone heard of this working.

i have not heard of people planning to have two diff treatments, but i have heard of people having one, it not working, and then the second one getting rid of it

i had gk in march 08. how big is yours/where is it located?

hi jess, i am having the gamma in two stages because my avm is 5cm and to big to have done in one session, its located on the front righthand side of brain.

I have heard of this, I just can’t remember which members had it done. I think member- “Pat” whose daugher has an AVM of 9mm may have had this done? You could try to contact her thru this site. I do think it is a relatively new method of treating large AVM’s but I think it sounds like it would be a good idea.
Let us know how it is going. I wish you the best. Stay strong! My son has had one Gamma treatment and it is working well on his AVM.

Hey Cheryl. I certainly hope it works because my specialist wouldn’t do my AVM because it was about 5cm, treated it with Onyx glue first. that was a couple of months ago but since then I have had several seizures and they won’t proceed with the GK until that is under control.

I called them on Wednesday to ask what they consider “under control” and 6 weeks without was ok (!) so I’m more than halfway there now : ) .

Did your specialist suggest glue as a precursor? I know it was difficult and expensive, so he or she may be reluctant for those reasons…

Good luck for what I know is a scary time for you,

Phil

Hi Phil, yes i hope it works too. :wink: my specialist said it was a new thing they were doing, ive already had half done having other half done in new year,everything ok so far but really there was nothing else they could do. so fingers crossed lets hope it works. i hope your seizures settle down and good luck with your treatment. cheryl x

Hi, Cheryl! Yes, I’ve heard of this. My AVM is 6cm. The plan was to have 3 or 4 embos followed by gamma. After embo #4, the AVM was still too large for radiation, so I went in for a 5th, but no glue could actually go in. One section of the AVM was “spread out”, so it was on to LINAC for the diffuse section (Jan. 2010). I saw the doc for a 6-month follow-up (all good, no swelling), and I’ll have another in another 6 months (around Jan. 2011). Then we’ll talk about the next radiation. Not sure if it will be LINAC again, or maybe it’s focused enough for gamma. One thing my husband and I learned from my own experience and others’ is “It ain’t over till it’s over.” Hang in there!

Cheryl: I have heard of staged treatment with gamma. My nevrosurgeon suggested that to my nevroradiologist due to the size of my AVM ( > 6 cm)



The reason they can not do staged gamma treatment in my case is because there are so many feeders to different parts of my AVM that even if they managed to block some of them they would not manage to block them all in one session and therefore my avm will continue as before.

Having said that, I got the impression that it is possible to do staged gamma (photon) treatment if you only have few feeders in the same area.



Wish you good luck with your treatment :slight_smile:

Hanne xxx

hi hanne thanks for your reply.i hope you get sorted with your treatment. take care,keep strong . cheryl x

Hi Cheryl
I have a large AVM, also on the right optical Lobe and have had about 5 embolizations in a period of a year and still too large for GK, but I have asked my Neurosurgeon about having staged treatment but they have never got back to me, I hope this works for you, and I hear the Gamma Knife center in Sheffield is very good, you will be in the best hands there.Stay Positive always.

Regards

Dipen

My wife has had one treatment so far because her AVM is “massive”. That quote is from the doctors. She is scheduled for another treatment in about 5 months now. It was always determined she would have to have 2 treatments with the gamma knife. Be mindful of swelling in your head from the treatment if they treat a large area. My wife had some pretty bad swelling in her head afterward, but pulled out fine as of now. Will keep you in my prayers, and keep you posted as it seems my wife and I are about a month or two ahead of you in her treatments.

Hi lee, ive just joined this site, i am waiting to have the gamma knife in sheffield, ive already had surgery but its grown back so i decided to go for the gk. I am quite scared but after reading how you are doing i am feeling quite positive. It really helps to share wot ur feeling are and treatment we have with other members on here. Good luck for the future.