I was just wondering what was the deciding factor on those of you who had either surgery or continue to take medication for your symptoms and why you chose the way you did.
I have not seen the Neurosurgeon since my hosptal stay. I am on medication (anti-seizure) for a month to see how I do. Things aren't as bad as they were, but they aren't getting any better. I am so tired of feeling like crap. I am way too young to feel like this and it is actually stopping me from doing things I enjoy. I might be jumping the gun since I haven't gone to the Dr. as of this blog. Just wanted your input. Thanks and I hope everyone has a great day.
I knew about my avm (5cm) for 16 years before I had it treated. The reason I finally decided to have the GK done. Was because I was having gran-mal seizures, along with some other problems. My dr. told me that I was having all of the symptoms of my brain ready to bleed. The decision was kind of a "no-brainer". :)
Some seizure meds do take some time for your body to adjust to. It's possible too, that you may need a different med. I would suggest you talk to your dr. about it and see what he/she says.
Thank you for your input Ben. Wow 16 years thats a long time. Did you have symptoms for those 16 years or did they just get bad all of a sudden? My AVM is not that large. Where was your AVM located? Was GK your only option or was it the best treatment one for you?
Have your symptoms gone away or are you still on medicine?
Nope. I didn't have any symptoms or problems from it at all. That's why I didn't get it treated for so long. in January of 2007 I started to have problems with dementia and vertigo. Then in the beginning of February, I had a gran-mal sizure that lasted about 1/2 hr until I went unconsciouse. I went to the E.R. at that point. I was put on seizure meds and I eventually had the GK done. Which was my only option because of it's location. My avm was located in the left frontal lobe and into the basal ganglia. The GK didn't shrink it completly. I now have 2 avms, about 1/2" in diameter left.
When I went on a seizure med (in 2007), it worked for me for 2 1/2 years. Then my system changed and every med they put me on either didn't do anything or it made me worst. So, I'm not on anything but, pain meds now.
I now live with, what they call nontreatable "non-epileptic seizures". They call it that because my seizures don't show up on an EEG. Even though I seized during the test. Go figure. I also have cervical dystonia, memory loss, carporal tunnel in both my hands and weekness in both my legs. I can't stand very long without one of my legs shaking. I can walk ok short distances, I just can't stand without holding onto something. And I have chronic pain through my whole body. When I try to lay down and rest - most of the muscles in my body tighten and stiffen up. Even my stomach muscles stiffen.
The good part is.. because my muscles tighten up.... I look like I work out and I don't.... I have muscle tone with no strength... LOL.. LOL
Sorry I got a little winded on this. I must have had to much coffee. Ha Ha
The drs. aren't sure if my problems are from the long term effect of the avm itself or a side effect from having the radiation done. I saw 9 different dr.s and they all came to the same conclusion. I think it's from the radiation but, there's no way of telling for sure. This is why I won't have it treated again.
I read you profile. If the neuor-surgeon you now have doesn't specialise in avms. I would suggest you have him refer you to someone who does. I'm not putting down your dr. at all. I just want you to have the best care you can get. I once knew of a man who was in his 70's with an avm so big. That no dr.s in the entire country would touch him (my neuro-surgeon told me about him). It never gave him any problems and he ended up dieing from a heart attack. NOT from the avm. There are a lot of success stories of people who live with there's and don't have any problems...OR...The meds they are on, work for them.