so im curious, if its even allowed on here im sorry if its not. i read the rules and didnt see anything against it. i was wondering if you guys have pictures of your avm’s. mine was really small, but ive seen 5cm’s and other sizes thrown around. im just curious as to what the bigger ones look like
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Here is one of my MRI’s. You can see the embolizations. You can also see the new 2 feeders going to it. It had recruited new arteries. Ugh! Found out about it in 2012. Now its 2020 and it is still there, all be it a lot smaller. It was 5.4 cm. Grade 3.
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good lord thats a lot. so is yours to big for gamma knife. how is it recruiting other veins, i have so many questions. but thats mine where his finger is pointing, almost feel like mine is nothing compared to yalls
I had 3 radiation treatments. The 1st 2 they did 6 months apart. Down the road 2 years and they had missed a spot. That’s were the 2 new arteries start feeding it. So another round of radiation and another embolization. In all 3 embolizations and 3 radiation treatments.
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so you did gamma knife? im guessing thats the only radiation they can do for that right
I had what they call linac radiosurgery. Same principle though. That’s the type they use at the Mayo in Jacksonville, Florida.
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gotcha, so you said yours had new veins feeding it. but how does that happen? im sorry if im asking to much
That’s fine. The radiation just missed an area. That’s what gave it the chance to recruit new feeders. " I want to live " it said. Lol
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at least you have a sense of humor about it all
good lord man, yall make me feel bad for my problems, yall have it so much worse then i do. so you did gamma knife 3 times?
so what made you go to the doctor for yours. like how did you find it
I had a big ol seizure at 49. Even though mine was ugly…it did not rupture. I don’t think the size ultimately determines the likely hood of a bleed or rupture but I know not to compare. These things are scary…large and/or small. The gamma knife treatment did work for me and its gone now. 3 zaps in 16 months…and roughly two years later it was gone. They got a good look at it due to it’s position on the outer part of my brain. Many of us are not so lucky. I hope it works for you too.
I’m sure your doctors told you about it taking time to work. This is so true. My doc didn’t say much…but what he did say, was spot on.
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BrianAVMfighter I had a big seizure too. That’s what led to the discovery of mine. How long did it take to get rid of yours? How big was yours? Mine was 5.4 cm I believe when my treatment started. That was in October of 2012. It is still not gone.
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Hi Melissa. Mine was the same size. 5 plus CMs. I’m much luckier though. It was obliterated in less than 3 yrs. My doctors said 3 to 5 years. I was way ahead of schedule. I just got this word 3 weeks ago. I sure hope you get through this.
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yea, i know comparing is the smart road to take. my doctors are amazing, everything they have said has been spot on like you said. its just the waiting game thats starting to get to me. i havent seen him in a year and im sure when i do finally see him this month its gonna be another long strecth before i see him again. and its hard to walk around having questions
I dig that K. This might sound lame but focussing on what I “can do” was instrumental during that time for me. No matter how menial. Turns out this part has remained. I started with walking an hour a day. I still do it because it really makes me feel good. Whole body. My “can do list” was critical for not freaking out or getting too low.
Also I got off sugar. Huge improvement for the brain which was in trouble. Spiking sugar levels for so long did not help my mind. Hang in there brother.
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so ive never really had a sweet tooth, but this year for lent i gave up sugar completely. sweet tea was my biggest vice, but i have had that since the beginning of lent. ive went to the gym 3 days out of the last 5 which hasnt happened in forever.
so after my gamma knife i waited 3 months and went back for an mri to make sure there was no necrosis. then its a year wait to see the doctor again. i just did that mri the other day and i go see my doctor on the 17th. whats the next waiting period? i know i have another angiogram to do. or what was yours i should say. he told me in the beginning this is about a two year process
Yeah it was 6 to 7 months between the last mri and the last angiogram in my case. It maybe different for you. My brain did a lot of changing during that time. The fatigue got much better I can say that for sure. The AVM,the seizure,the meds, and the gamma zaps were knocking me out. Its all gotten better. Next is to get off of meds. I have to eat seizure meds by law If I want to drive. Itll be another process. 6 months of no driving to see how I do. Still glad to be alive though. One step at a time for all of us.
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