My wife had a GK treatment in April of this year and is having tingling on her right side. It seem the Meds that she was on needed to be increased more. From 1000mg twice a day to 3000mg twice a day. Pus was taking Dilantin at night.
Surprised no one has responded.
I suggest you search at this site for GK or Gamma Knife. Should give you lots of reading; as I recall, a few had issues following.
Hope this helps.
Ron, KS
I had some pretty bad swelling which caused major headaches. Small price to pay for that word obliterated though. The worst part of my entire AVM experiance appart from being diagnosed was the steriods. Horrible horrible side effects.
Sorry for the duplication... Sounding desperate.Yeah, I guess!
I have had lots of issues but my hope is that it is doing it's job. That sounds like an aggressive med approach. The doctors must have a plan for her. I would do some research and be confident with it. I am always fighting med additions and increases for myself unless they can thoroughly explain every detail and the why of it. That's just me.
I hope your wife is AVM free ASAP.
Thanks for responding. The Doctors use us as guinea pigs, they just give us meds to see if it works or not. It's trial and error. So now she is just starting on a new drug called Vimpat. $448 for 30 pills. I hope this one works. To determine if you have brain swelling,I guess it is by headaches,compared to a seizure.
Anyone else having the tingling and heavy pressure in the chest?
I am having those symptoms and they are calling everything migraine with or without headache. My guess after some research and where I am in my journey would be swelling. My neurosurgeon seemed knowledgeable but my neurologist I believe is learning through me for which I do not appreciate. I am not on that medication but was put on one for migraine the other day that I was warned could lessen my anti-seizure meds and the first night woke with paralysis in my right side. I understand your frustration. Don't give up. Definitely still if you can get to a specialist try. I am transitioning to one now at a different hospital.
Hi Holly, Thanks for responding.
My Doctor is calling these tingling as seizures. At times, I wonder if they know what are talking about. So you get the tingling on your rt side from the hands up the arm to your head? If I'm correct you did not have a bleed correct? So far, my wife on Vimpat and weaning off the Keppra she has no symptoms yet. To soon to tell. What Meds are you on?
Hope you get better and good luck, as we all need it.
I did have a bleed. That is how my AVM was discovered. I have had multiple seizures since. I am on Keppra for seizures now. I don't know Vimpat. They also just put me on something for migraine. That's what they attribute everything to these days despite the seizures. Considering we are the 1% we really are a science experiment for most of them.
Sending positive healing energy your way!
It can get rough, I won't lie to you. Perhaps you won't have as many issues as my wife has had. It's caused necrosis of course, and the swelling just didn't stop. Two fridays ago, they had to remove 80% of the right side of her skull due to the swelling. Long way to say, yes, things can happen. We have been told that she is the .5% of all people that have AVMs though. Things like this are not common place for those that do the GK
I guess the Keppra is working for you. My wife has been on keppra foralmost a year now and I guess her body got use to it and did not work. Last night her rt hand got numb or weak but did not travel up her arm. I massage it and it went away. I will increase from 50mg vimpat to 100mg in two days.
When did you have your bleed? and how big is it? Think positive for it is a rough road we all have to endure.
Our prayers go with you all. We all need to be strong.
Keppra is debatable since they keep having to increase dosage but I don't like medicine. I have been having seizures and now paralysis on my right side, partial blindness as well as other visual problems, speech impairment, extreme fatigue etc. Mine bled in June 2011 and it was not a full on hemorrage. They said my son acted fast enough they were able to stabilize me before it got worse. My AVM is small and deep in my left frontal lobe.
Hope that med works for your wife. Each symptom is frightening.
Yes, whenever my wife gets a symptoms it scare me also. There is nothing I can do. Her size is 4 cm at her left side and they can not take it out. That's why GK was done. Was yours close to your motor functions? That's where my wife's is.
She had it in May 5 2011.
Did the Doctors say why you're getting so much seizures and paralysis? It more sounds like you have swelling that is causing the paralysis. Our Doctor gave my wife steroids to keep the brain from swelling.Plus my wife is working about 10 hrs a day. I can't stop her.
Hers sounds very similar to mine. I do believe my symptoms are from swelling but my neurologist doesn't agree, but doesn't treat any other AVM patients I don't believe. I have days I can't get out of bed. I give your wife credit working so much! I have all I can do to take care of my son and keep my house afloat these days. I was a driver though so that has been devastating that I can't do what I have done for so long. So it is hard to say what I would have been able to do for how long had I had a different profession.
Holly, Maybe you should request another Doctor. It seems like he does not know what he is doing. Brain swelling should be one of the symptoms that many agree.
Did you have a GK?
I am in the process of transferring but because of insurance it is not simple. I did have Gamma. At this point I am my own doctor. ;)
I'm sorry to hear that. I pray that you get the necessary treatment you need.
I think the doctors are as unsure as we are in trying to predict what is happening to those that have GK and the after effects.
Just hang in there and we wish you well. If you want to chat or have any questions that we might be able to help. don't hesitate to write.
Thank you Andy. Stay strong friend. :)