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AVM Survivors Network

AVM Grade 2 - newbie - GK offered - Help with others experiences please


#1

Hi - not sure if posting in the right section. I have an AVM Grade 2 6cm discovered after MRi following accident. Have been offered surgery but can’t face that and opting (at the moment) for Gamma in Sheffield. Am told AVM is close to surface and good prognosis for GK but I am really worried about the side effects and keen for any feedback from those who have had GK. Stupidly I’m really scared about my hair falling out - I did have this happen 15 years ago due to stress and the thought of going through it again almost makes me not want to do the GK. Also worried the GK will give me side-effects that I don’t currently have with the AVM. Not ever bled and up to now didn’t know it was there. Any side-effect feedback appreciated. Sara


#2

I didn’t have GK because I wasn’t willing to take the risk of what might happen waiting for it to do its job; if I were you I would think again about surgery if your AVM is near the surface the rely on the feedback of the other GK people on here before you make any decisions…best of luck!


#3

Hey Sara, me again! I agree with Mike, I would be sure to assess all the options, it may be worth the surgery discussion with your Neuro. I guess the end point being make sure you have a look at all your options and make your decision. I went gamma based on location an Dr. recommendation based on this. This was due to the likelihood of effects to get at mine. Take Care, John


#4

I would agree with Mike about surgery as scary as it may sound… I had no option but surgery as I suffered a bleed and like you my AVM was closer to the surface and my neuro believed surgery was the best option… its not an easy decision and ultimately will be yours to make… God bless!


#5

Hi John. Was GK a success for you. Any side effects. I just can’t do surgery. Too long recovery. Have a farm and a lot of four legged dependents!


#6

I don’t think I have had any side effects of Gamma Knife, with the exception of maybe a little louder Pulsatile tinnitus. I am having an angio on January 28th and will know a couple weeks after that if it is done or not. The tinnitus causes me some concern but I do have some Eustachian tube things that may be causing that. TBD!


#7

Hi Sara
I had gamma knife twice based on the neurosurgeons advice and the size of my avm, my hair fell out out both times but only where the radiation was targeted, (so a couple of inches) it was just above my right ear so the rest of my hair covered the baldness. It did grow back after a few months you would only of noticed if I showed you or had my hair in a pony tail. I think it fell out as part of my avm was also close to the surface and I do recall reading that as a possibility. I never really suffered any side effects of gamma apart from the hair falling out and little niggly pains which was controlled by a couple of paracetamol,but unfortunately I did suffer a bleed during the waiting time so I had to undergo surgery to remove the the avm in the end. Mine was located in my right temporal lobe and was around 4cm a grade 3 if I recall correctly, this was may 2017. Surgery went well wasn’t as bad as I built it up to be, recovery has been well,was back to work in the September. I was totally blessed that I didnt suffer any deficits from such a large bleed. My only real problems I suffer now are short term memery, anxiety and loss of appetite all of which is working progress.
Feel free to ask any questions Amanda xx


#8

Hi Sara:

I had the Gamma Knife Radiation procedure in 2015 and I suffered no serious side-effects. After the procedure I had a constant headache for about 3 days, but no migraines. My scalp was also numb for a few days. I did not lose hair after Gamma. I lost hair while I was in the hospital for 4 weeks being probed and tested and connected to various leads in my head. I had Gamma because the location of my AVM in the Cerebellum was too close to my neck muscles and Gamma was the only option open to me. After 3 years, my AVM is now 50% smaller. In a few weeks, I will have my second Gamma procedure and will have to wait another 3-years to find out if the AVM has been totally eradicated. Yes, it is an extremely long process, but I am doing well but I still have some issues. (vertigo, balance problems, trouble with flashing lights and loud noise. All things considered, I’m beyond grateful for each bit of healing I have received. I give to you my secret potion for treating AVM’s … P&P (Prayer & Patience). AVM’s no matter where they’re located, require P&P. Wishing you the best.

Sharon D…


#9

Thank you everyone for posting - I think I’m going to go for GK rather than surgery - can’t really take such down time with my lifestyle and job ! Thank you all


#10

Sara,

It’ll be good if you can get the treatment that you prefer, though 6cm is not small by my reckoning, so I think they may err towards surgery. Make sure you listen to the doctors as to their recommendations and if you really need to take time out of work to do something, then take the time out. We are all fools who think we can just press on forever at the rate we did when in our twenties. If there is a common thing about people who have a bleed, I think it is that we push ourselves too much. So my incitement is to be sensible and honest with yourself.

Very best wishes

Richard