Hi Everyone,
As most of you have experienced, I am now faced with the daunting choice of whether or not I should undergo radiation or surgery. I have a deep brain Splenium AVM located in my Corpus Callosum. What are your experiences with Gamma Knife specifically? My AVM is about 1cm and has about 3-4 feeders. I know everyone is different, but it would be great to hear about any experiences both positive (ideally) and negative. Thank you!
Hi jennifer if ur doctor gave you an option i whould choose surgery because it remove it forever if you do gamma you will have to wait 2 to 3 year and many treatment to remove it all but also not 100 percent. I have two surgery 1 is deep and the other one is almost to the surface im doing good. Both my surgery is this year.
I have a 6 cm AVM in eloquent tissue, so my surgeon reccommended GK prior to surgery. He now thinks he can shrink the whole thing with 2 rounds of GK (instead of the initial 3 rounds + crani). I ended up having a crani anyway for 2 aneurysms that needed clipping. GK is MUCH easier than crani, so I'm hoping that GK phase 2 in December will take care of the AVM.
Hey Jennifer. You're right to recognize that we are all different. My AVM is in my left cerebellum. It's between 3-4 cm. I had GK done in July of 2010 and before that I'd had two bleeds. The first one was my initial diagnosis. My GK caused me to lose a tad bit of hair but nothing anyone could see. After my GK sadly, I had two other bleeds strokes/ and finally in May of this year I had a partial/minor embo. To tell you the truth...it's really starting to bug me again with the really really bad headaches and stuff. The one thing I can tell is that my back spasms have eased and aren't as bad.
The one thing that's been the hardest yet most rewarding thing to do is to maintain a positive attitude. Even through all of the pain and all of the burdens we feel, keep that faith in your heart that it's a greater power than you that's keeping you here and try and touch someone's life. I learned the beauty of laughter. When I was in the hospital for a few weeks last time, I always found something to laugh at when the nurses or orderly's were changing my bed pan or injecting me with more drugs. Best to you and I hope and pray you choose the right path. Also remember to ask many many questions to your doctors. That's what they get paid the big bucks for :-)
Hi Jessica, Thank you for telling me your story. I am a woman of many questions, so I will ask the doctors everything I possibly can think of. I definitely see the challenge in keeping a positive attitude through everything, and I guess I am still in the beginning "shock" phase, so I have a hard time processing everything. I am hesitant to undergo radiation because of it's lack of effectiveness in some cases, but then again, my neurosurgeon said that brain surgery would be risky because of the location of my AVM. I am sure I will have many more meetings before I make any decisions. Thanks again for your input. My thoughts are with you and I hope you feel better soon! Headaches are the worst!
Hi Jennifer
I am in a very similar position to you and have the choice of do nothing, GK or Surgery and understand it feels impossible to decide. I have a 3cm grade 2 AVM and currently almoush no side effects.
I am taking 6 mths out to think things though.
Do you have any side effects from your AVM?
Daniella
Hi Jennifer, I was faced with the same decision back in April and for me, I choose the radiation treatment (CyberKnife treatment) after they had embolized almost 85% of my AVM when I had my bleed. This was the least invasive and also least risky option to treat my brain AVM over surgery. Yet the only downside is that it does take take a longer period of time to get that "AVM-FREE" report that we all want so badly and now will just have to practice patience until I hear those words :))!! My experience with the radiation treatment (only required one treatment thus far) has been uneventful :)! While I do have some hair loss and was extremely fatigued initially, both of those side effects that have easy remedies ... sleep and rest worked for the fatigue and the hair, well, I've been wearing alot of those clip-on styles lately :))!!
Best wishes to you in whatever decision you make that is best for you!!!
/Michele
My son had radio-surgery last year. the doctors said it would work over a two year period. They attempted embolisation but had to stop as it was too notted up near the AVM and it could have been dangerous. I was scared to death of my then 8 year old son having radio-surgery as I'd heard of all the side effect.
Good News!!!!!! Ethan and I saw the doctors on Thursday to find his results out from his MRI twelve months on. Ethan's AVM appears to be gone. Ethan was up and about straight after the radio-surgery demanding subway!!! he was playing out with his friends the day after and at school the day after that. He hasn't experienced one of the known side effects so far ( God Forbid). The only thing I'd say is he's been a bit emotional. There's side effects with everything but I'd strongly advise you get treated you don't want the AVM to take your life!!!
As what the doctors have to cut through and if they make a mistake what could happen with surgery... radio-surgery targets a specific area...Side effects of surgery are instant, with radio-surgery they're gradual. I'm so please Ethan had radio-surgery. Ask the doctors what treatment they'd have and give their children.Ethan didn't loose hair or anything!
Good Luck I don't come on here often if you want to ask anything you can contact me on ■■■■■■■■■■■■■■■■■■■■■■■ xxx
Hi Daniella, I think I might take some time to think this through as well. I have had headaches for as long as I can remember, and have that "wooshing" sound in my right ear. Turns out it is very rare to have that sound be associated with an AVM instead of an AVF, but not impossible. So, I really want to take care of the noise, and hopefully the insane headaches! Thank you for your response :) I hope you are able to come to a decision that feels 100% right with you!
Thank you for your response Michelle! I agree this is going to take a whole new level of patience I have not practiced in a long time. Surgery is pretty risky, and could compromise my peripheral vision. I have been told I may also only need one session of radiosurgery. Thank you for the positive words! I wish the best to you and I look forward to hearing that you are AVM Free!
AVM 101…there is no great way to get rid of the monster. Whatever you decide to do…we will support you here! BTW… There is a sub-group on this site which might help…http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother