Now, I have already been through my, OMGosh I have an AVM.What's an AVM? There's little info on AVM's. Your only option in surgery. You have a 90% chance of bleeding on the table. Congratulations your a survivor. Oh sorry, now we have made you an epileptic.
But before those days there were the 5 years of symptoms. Debilitating migraines, tremors, unexplained stuttering. I began to have painful joints. I seen flashes of lights (oh yes, auras), I would get super hot, even taste blood sometimes. Guess what the neurologist did...sent me to have my blood sugar tested. HAHAHA. And not one neurologist but a few different ones. Change my migraine meds, tell me I was stressing myself out, maybe I had anxiety, and never do a CT or MRI.See I was a Soldier, 17-23 yrs old, changing neuros everytime I turned around bc either I was moving or the doc was. So there was no continuity of care.
But as I have done research throughout the years that I have been through this I see the medical field still trying to deny that these same symptoms that so many people have are not signs of an AVM and I just do not get it. When are they going to wake up. If I had gotten an MRI earlier then I may not have needed surgery and not be epileptic now and not be facing possible epilepsy surgery and there are probably many cases just like mine that is caught sooner would not have gotten so large. Why deny symptoms that so many people have.
As well I see that many people have seizures after resections, but were never told that was a risk. But it seems to be so common.
As you get to read more and more stories from others, you will see that there are many successful stories. You will likely have to take some meds to hopefully stave off the seizures, but that risk could go away as you get past your treatment. I can imagine the various guesses from doctors is frustrating, I know that's been a point of frustration for me.
But there are many people on here who have returned to their normal lives with minimal disruption. That may not sound like the answer you were looking for, but it's the honest one. All AVMs are as different as all brain injuries are different.
Please try to hang in there and not assume the worst.
Good grief...I am amazed not a single doctor told you the downside of brain surgery. Although it does sound like you were having seizures prior to the operation...auras etc. Did they run an EEG on you prior to your surgery? I am so sorry that you have run into so many incompetent doctors. This website might have some info and support you need...
It has been 4 years since the surgery so dealing with life as it is is not an issue...the medication and reoccuring seizures are just a part of normal routine now. I am not going to waste time being agry for what is...and I never have. Obviously there was risks attached to the surgery...but it was better then my brain hemmorhaging. On the other hand I was told if I didn't present any symptoms in the first 90 days (while my brain was swollen and repairing itself) then I would be fine. And to begin seizing months after that was very shocking. But that is now life. It is just all about awareness now...I think it is a shame that the medical field is still trying to deny symptoms that the majority of everyone that has an AVM presents are actually symptoms of an AVM.
Tina White said:
Crystal,
As you get to read more and more stories from others, you will see that there are many successful stories. You will likely have to take some meds to hopefully stave off the seizures, but that risk could go away as you get past your treatment. I can imagine the various guesses from doctors is frustrating, I know that's been a point of frustration for me.
But there are many people on here who have returned to their normal lives with minimal disruption. That may not sound like the answer you were looking for, but it's the honest one. All AVMs are as different as all brain injuries are different.
Please try to hang in there and not assume the worst.