This weekend on Saturday I had lost my vision in both eyes and went tingling in both arms and my mouth. i went last year and they told me they couldn't do anything more because two dose of radiation is a lot and it will not kill off the AVM anymore so I'm stuck with what i like to called the ticking time bomb because one day sooner or later i know it will bleed again or mebay not who knows. but i was alone with my sister and the color of her face was drained because she thought that my AVM was bleeding out and there is nothing the doctors can do. my mom rushed me to the ER and the doctor was clueless on what to do with me and the doctor that takes my case is in a different city two hours away and couldn't get hold of him so they just tested my heart and took a blood sample i was fine i feel fine but there is something that happened that is not fine. at the back of my mind i think I'm like any other teenager girl but I'm not there will always be that AVM that seems to stop me from doing something. i felt fine afterwards.
What you may have had is called a TIA. There doesn’t have to be a bleed for that, but you can have the same symptoms as stroke. Mine from just 2 of those are what I think are severe. I am going through physical therapy and cognitive and speech therapy twice a week. It’s HARD work! Sometimes I feel like I am back in grade school again with the cognitive work. With the PT, I am just exhausted. Hang in there. Maybe you need to see another doctor, but never give up!
I'm sure that was terrifying for you and your sister to see. I'm glad you are doing better now. Make sure you get follow up from a good AVM doctor. Life is hard enough without dealing with an AVM. You're strong, though, I can tell.
Hi Camille, I can relate to your words, I had surgery and subsequent radiotherapy for avm when I was 15 and 17, it didn't get rid of it and I was told there was very little further radiotherapy could do, they did say they were hopeful it wouldn't bleed but couldn't give any assurances. A few years ago I started getting similar syptoms to stroke every few months, my face and mouth would go completely numb then it would spread to my right arm and leg, my mouth would drop on the right side and I wouldn't be able to speak. I was diagnosed with complex migraines, and the doc told me that people with avm's are more susceptible then average to them. I started taking spirulina which is full of Vit B, and after that it subsided, whether it was because of that I don't know. I'm very hopeful they'll stay away. I don't know if that's what you are experiencing but it may be another possibility. My heart goes out to you as I know how terrifying these things can be. Hang in there, I hope you get it cleared up very soon, and you can get some peace of mind. Blessings
I had a stroke in 1980 and had a AVM had the problem fixed at Stanford bye Dr Gary Stiienburg and he fixed my AVM at UC Berkley at the Cyclitron in 1989 Dr. Stienburg is a Word renound Neuro surgon good luck I had my stroke at 19 and am 53 now and couldent by happer.
The symptoms you are experiencing is normal after radiation. Your doctor should have told you that radiation keeps working for 3 years. I know it’s scary, but my advice to you is to research neuros in your area that actually know about AVM, and the treatment, as well as a doctor that would take the time to explain what could happen within the three years AFTER radiation, and what is normal. Hopefully you’re able to talk to your Neuro soon and I’m sure he will tell you it is probably due to the radiation.
I had a bleed in 1979 and then lived another 20 years with an untreated avm until i finally had radiation. Had two kids too. It can be done. I tried to live a normal life. I think we know too much now sometimes. I didnt worry cos i didnt know i think how different i was to others around me. Keep yr chin up.
I do have a Doctor but in a different city and that all they can do and he said that small part will not come off or shrink anymore so they just have left it and i go back each year for a MRI this is my fourth year and I’m hoping its continuing to shrink but its highly unlikely and i think I’m more nervous for this trip than i was so find out about the AVM still being there. i go back in a week and hopefully my brain decides to not have another espdoide until then.
Camille, never, ever, give up hope. My AVM ruptured back in December of 2004. Because of its location radiation was the best route. They told me that within a year it will die, shrink and go away. 10 years later and 10 years of going back I get the same news. Well good news, it hasn’t got any bigger! Of course it hasn’t gotten any smaller either, and my last visit they advised that blood had started to flow back through the spot that ruptured. They acted as if it is no big deal, but I’m thinking, uh…wait a sec here doc. If blood is starting to flow back through where it ruptured, where is this blood going to go. I was going to ask him, but a few years earlier I asked a question about my headaches, and he advised me that I would have to go to the ER. Here I am thinking, I am in the neurological part of the hospital, talking to a neurologist and I have to go to the ER to find out about my headaches. Don’t worry, I’ll call them and tell them you’re coming and they will send you right back. 8 yes eight, hours later, they finally call me back to be seen by a student, learning hospital aye!!! Anyway I tell him what is going on and he calls the original neurologist ,as they advised me, was the best neurologist in the world, who had put my shunt in. He said it can’t be the shunt, give him some Tylenol and send him home. When the student returned one of my headaches kicked in and after it was over, I realized that I had grabbed the poor fellows arm and the bed rail. The bed rail was bent and he said " I think you just broke my arm." I hadn’t be caused in just squeezed it, but did leave a good handprint on his arm and it was already starting to turn purple. I stated that is what my headaches are like and I get them anywhere from 5 to 20 times a day. He went back and called Dr. Wonder and he advised it can’t be his shunt, he would be having the worst headaches of his life. Give him some Tylenol and SEND HIM HOME!!! I didn’t take the Tylenol because I had some in the car and what they would have charged me for those two I could have bought a whole bottle. But went on like this for months before my primary Dr. called in a favor to be checked out. It took two months of trying to get another neurosurgeon to look at me. They don’t like to do that if you have been seen by another, especially if they had done work on you. But this guy finally gave in and after the x-rays asked me if I had plans for the night. I sad no, he said good because you are heading to the hospital because your shunt is no where close to where it belongs. He fixed it and those headaches have gone away. That point was to prove I wasn’t going to ask the doctor about the blood flowing through the ruptured part because I didn’t want to wait another 8 hours to let them tell me oh it’s ok you can go home, oh here’s some Tylenol. On my next visit I am going to ask if they can hit me again with the radiation, maybe it will work next time. I am an eternal optimist, I take pain killers to keep my headaches at a manageable level, they never go away, and sleeping pills to sleep that never work. My wife says why do you keep taking them? Well the last ones didn’t work, but these might. Any ways I guess the whole point of this long drawn out garble was to say as I said at the beginning. Never, ever, give up. The last treatment might not have worked, but the next one might. Good luck and keep your head up and keep fighting, even when you feel you have no fight left in you, dig deep, because once you give up, there is no going back. Fight on!!!