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AVM Survivors Network

Awaiting Gamma Treatment

Hi,Guys. A little background about me : I was diagnosed with Avm of the right parietal lobe in the August of this year after suffering symptoms of chronic headache, memory deficit, and reduced cognitive abilities. My main concern is that these sorts of issues could be permanent. In retrospect, I’m hoping that my Gamma ray treatment brings me back to my former self after as my avm is gradually eliminating. Any input would be highly appreciated.

Hey Benjamin I had the Gamma knife procedure done, ever sense my AVM my memory isn’t all that great. I still get pressure pains in my head that last anywhere from a few seconds to a couple of minutes. I was told that this would be a permanent thing sense I’ve had 2 AVM’S pop in my head. But I don’t believe it’s because of the Gamma knife. Good luck with everything.

I had the gamma knife a little over two years ago, and looking to have another soon. Did I get back full mobility? No. I have trained myself to use my left side for more fine motor activities, since my right side has been seriously effected mostly due to a stroke I had during my second embolism. Ya know the best advice I can give is to know you can do most everything if you take your time, breathe and you will get to where you want to be.
Much love and many hugs
Christine

Hi Ben,

I had gamma knife about 2.5 years ago for an AVM in my left cerebellum. The headaches are pretty much gone. Still get some once in a while, but are more of the 'normal' headache than the hammer to the head type.

As for the rest, I'm not sure. I still have what I call 'steering problems' since where my AVM was controls fine motor skills. But, hopefully, your other things are being effected by the pressure of the AVM and will restore once it's gone.

From what my doc said, brain tissue does not regrow, so once it's gone, it's gone, or never grew in the first place if it was there from birth.

I've found that my memory has gotten better since the headaches have stopped. Hopefully you will too.

Oh, and one more thing. About 6 months to a year out of Gamma, if you start to get severe headaches (even worse than before) or have any vision issues (I saw a large glowing ball that wasn't there), go in immediately and get an MRI and get it reviewed. My problem was that the swelling from the AVM being closed up was so severe it was causing this. They can put you on a steriod pill that will relieve this within an hour. Follow the doseage as the doc says, but try to get weaned off them as soon as you can, they won't kill you, but boy do they make you want to eat... Still working off the pounds.

Hang in there.

Each and every person is an individual. Everyone has different recoveries. No one can say that one shot of Gamma is going to fix everything. I've had several friends who have had GammaKnife with different symptoms, and recoveries.

Hi Benjamin, I see you have been given some great advice from fellow members. I had good results from the GK treatment and I pray for positive results for you too! Please keep us posted.

First I would like to wish you all the best in your recovery. I had my gamma knife one year ago. I got worse headaches after the GK then I had before. I had a bleed 5 months before that’s how they found the AVM. Mine is in the cerebellum i also had a stroke which was caused by the bleed. My left hand fine motor skills aren’t back but they are getting better. My short term memory is still not back to normal but that could be also a part of being 49:) Everyone is different and we all react differently to these procedures. Just make sure you are informed and do what you feel is best for you. Prayers for a wonderful outcome. Please let us know how you are doing.
Hugs- Niyani

You might have -- as for me I had a stroke when my AVM ruptured, had no jump in recovery after gamma knife but my deficits were caused not by AVM itself but probably by scars pressing on nerves.
Scars were not removed...

My memory loss increased considerably just after the surgery (the first week or so) as did the fatigue. But both have improved, whether that’s due to the surgery or not, I’m not sure

Hiya Ben, I have an AVM in the same location + right frontal. like other people, my memory loss, fatigue and lack of cognitive functions due to seizures + TIAs prior to diagnosis have increased since surgery. After lengthy tests with A Neuropsychologist I was told I was left with executive dysfunction. gamma knife has increased it but don’t let this shade your judgement about the gamma knife. Its saved my life. There is therapy available (unfortunately not where I live) and it will help recover some of what you’ve lost. The seizures and TIAs however are practically non existent after 3 years. I’m getting better at remembering and can cope with more complex task before fatigue kicks in. Time is the only thing that can tell how well and how fast you can recover but support and a lot of bloody minded determination will help you:) most importantly, be patient with yourself, don’t get angry when you forget/make mistakes/screw up completely, that just held me back. Read up on executive dysfunction to help you understand yourself better & very best of luck to you :):):slight_smile:

Benjamin, first off even though you may still be angry because of what you are going through the alternative is worse. Please stay positive because everyone is different and everyone's outcomes differ. My AVM was diagnosed 35 years ago with a variety of treatments which includes Bragg Proton, embolization's and Gamma knife. During this time I noticed gradual issues regarding memory loss. When I met with my current Neurosurgeon about 5 years ago she told me that the best we could hope for was that the cognitive issues would not get any worse but they would not improve. Recently I notice greater problems with my memory and went back to meet with my Neurosurgeon at Johns Hopkins. She reminded me of our first conversation. She believes my memory loss has probably been caused by the exposure to radiation that I have had for both imaging and treatment.
I have also recently read that Gamma knife treatments are shown to cause memory issues at about 5 years after treatment. Unfortunately there is nothing that can be done. My Dr. sent me for neuro psych testing that would give us a baseline. I wish I had done that at the onset. I am trying to minimize changes in my routines, keeping a notebook to write things down but it is very frustrating. I too have constant headaches which vary in intensity and also tinnitus which is sometimes more annoying than the headaches.
I wish I could tell you that it will improve and maybe in your case it may since it has not been that long since your treatment. I would recommend getting the neuropsych exam so you have a baseline in case you eventually need to go out on disability. I wish you the best and let me know if I can be of any assistance.

My AVM ruptured in December of 2004. It is located in a spot that they cannot operate on so was given 3 options. 1. Wait and see what happens. Uh, no B. Embolization. Even the slightest movement in any direction could leave me paralyzed for life. Uh, no. 3. Radio static therapy. One giant dose of radiation and AVM will die, shrink and disappear within a year. Okay. 1st year follow up, great news, it hasn’t gotten any bigger, BUT it hasn’t gotten any smaller, but that’s ok sometimes it takes a little more than a year. Went back every year, got MRI went to see neurologist, told the same thing. 10 years later AVM still same size and now blood starting to flow back through where the rupture was, come back in 1 1/2 years and we will see what is happening. Didn’t have Gamma Knife so can’t say what will happen but I know the radio static treatment did not work for me. Have head aches 24/7 365 sometime get flash ones that feel like the worst brain freeze ever, or a tiny loony toon Tasmanian devil wrapped up in barbed wired running around inside my skull. They last anywhere from 1 to 3 minutes but seem like 1 to 3 weeks. Have just learned to live with it the best way I can. I truly hope that your experience is so much better than mine. Oh I have memory problems as well. If I don’t think of something at least every couple of days it just disappears into thin air. I tell my wife, it’s a good thing I married here before this happened, because she sometimes goes visits her mother for a few days. Memory before hand great, afterwards not so good. I have people come up and talk to me and I just go along with it, having no idea who they are, but such is life. I see it this way. I wake up each day, that makes it a good day right there. I go outside and see the topside of the grass and if the sun is shining I see my shadow. Beats the alternative. Good luck, wishing you the best and remember if you wake up, it’s already a good day.

Hello Benjamin, My AVM was located in my Right Parietal/Occipital Lobe, and I also had the GammaKnife procedure done.
I've had head pains post GammaKnife, but the pains did not occur as often is it used to months into my recovery.I still struggle with memory and have to keep a checklist with me at work, and when going to the supermaket. I struggled with cognitive during the first two years of surgery - it seems to have improved, but I still struggle with it, as well as my speech sometimes. It has taken time though, I've learned a lot about patience with myself. Wishing you the best on your recovery.

Hi! My daughter's avm was in her right thalamus and basal ganglia. Memory deficits were already severe because of her stroke. She is making progress - gamma knife radio surgery caused no noticeable changes.

So I guess what I'm looking for is if there's a good possibility that my symptoms can be alleviated after Cyber Knife treatment. My angiogram revealed that my Avm isn't bleeding and that it's never bled before. Does Cyber knife treat my symptoms or just the Avm itself, or could it be both? Any help is regarded as extremely valuable and is deeply appreciated. Praying for you all.

Ben

Gamma & Cyber will treat the AVM, brain games and practice will help with memory.

My AVM is in the right parietal and affected my short term memory. I played Simon for hours on end whenever I was bored at home after the hospital.