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Multiple Subpial Transections, anyone??
Sun, 07/31/2005 - 13:04Comments
RE: RE: Multiple Subpial Transections, anyone??
Submitted by sophie3272 on Mon, 2005-08-01 - 08:48
Lisa,
THANK YOU for your reply! I didn't know if I'd get any responses since this isn't done that often - I don't think. You were really brave to have the MST done that many times. Do you mind if I ask you what types of seizures you have/had? I assume you still need to take drugs? What drugs are you on? I take Topamax and Klonopin, which work fairly well, but it's funny, the side effects are similar to what you are describing from your surgery (not funny, but you know what I mean). I'm really scared, but I may not even be a candidate. I'm just starting all of the tests for pre-surgical eval within the next few weeks (MEG, Wada test, video-EEG, etc). If the seizure origin is in EXACTLY the same spot as language/speech, they told me they most likely will not do the surgery...but they said there is a good chance the 2 areas might have enough distance between them. I went to NYU and saw Dr. Devinsky for the consult; that is where I would have the surgery done IF it works out. I think he has been doing them since the early 1990's. I don't live too far from New York City, so that's good. Do you feel your decision was a good one, or are your results not spectacular enough to have made it worthwhile? What do your docs say about your confusion with language? I'm sorry if I'm asking you too many questions. Well, soon I'll be starting all my testing and I'll know where I stand. Thanks again so much for the info. I wish the best for you. And I'm glad for both of us that there are wonderful things like spell and grammar check!!
Lisa,
THANK YOU for your reply! I didn't know if I'd get any responses since this isn't done that often - I don't think. You were really brave to have the MST done that many times. Do you mind if I ask you what types of seizures you have/had? I assume you still need to take drugs? What drugs are you on? I take Topamax and Klonopin, which work fairly well, but it's funny, the side effects are similar to what you are describing from your surgery (not funny, but you know what I mean). I'm really scared, but I may not even be a candidate. I'm just starting all of the tests for pre-surgical eval within the next few weeks (MEG, Wada test, video-EEG, etc). If the seizure origin is in EXACTLY the same spot as language/speech, they told me they most likely will not do the surgery...but they said there is a good chance the 2 areas might have enough distance between them. I went to NYU and saw Dr. Devinsky for the consult; that is where I would have the surgery done IF it works out. I think he has been doing them since the early 1990's. I don't live too far from New York City, so that's good. Do you feel your decision was a good one, or are your results not spectacular enough to have made it worthwhile? What do your docs say about your confusion with language? I'm sorry if I'm asking you too many questions. Well, soon I'll be starting all my testing and I'll know where I stand. Thanks again so much for the info. I wish the best for you. And I'm glad for both of us that there are wonderful things like spell and grammar check!!
RE: RE: RE: Multiple Subpial Transections, anyone??
Submitted by angel_lts on Mon, 2005-08-01 - 14:47
Sophie, You are right, this option is not given but to some people. I went in to see if I could get the regular surgery done and I had to go in for an exploritory first. I was not a candidate and had to go back in to get the grind taken out.
Two years later they offered this too me. I had one surgery and they made me stay in the hospital and see if I was still getting seizures. I was, so they pulled me back in again and finished it. Months later I accidently got hit in the head. I went back in for surgery again and my speech went and pulled me out and back in a few days later.
I have complex partial seizures. I am glad I had it done for it is better that I got rid of some than nothing. I take trileptal and I am in the middle of reducing it. I did have 234 auras a month after surgery. I got rid of them from omega and I got rid of nine seizures a month. I am now down to one or two every other month.
I am doing neurofeedback for the last seizures because of stress and anxiety.
How many seizures do you have? Be careful for topamax gave me seizures 20 twice a month, I had to get off of them. What type of seizures are you having again?
I am not sorry I did the surgery at all. But I do feel I wish I knew more about the alternatives sides first now, for I am getting alot of help there too. It is truely hard to say.
I had spots all over the brain so they only could only do some because of my speech...it was from dehydration as a child from being sick.
good luck with your decision
If you have more question be sure to ask for there is not many people who have had it done.
Lisa
Sophie, You are right, this option is not given but to some people. I went in to see if I could get the regular surgery done and I had to go in for an exploritory first. I was not a candidate and had to go back in to get the grind taken out.
Two years later they offered this too me. I had one surgery and they made me stay in the hospital and see if I was still getting seizures. I was, so they pulled me back in again and finished it. Months later I accidently got hit in the head. I went back in for surgery again and my speech went and pulled me out and back in a few days later.
I have complex partial seizures. I am glad I had it done for it is better that I got rid of some than nothing. I take trileptal and I am in the middle of reducing it. I did have 234 auras a month after surgery. I got rid of them from omega and I got rid of nine seizures a month. I am now down to one or two every other month.
I am doing neurofeedback for the last seizures because of stress and anxiety.
How many seizures do you have? Be careful for topamax gave me seizures 20 twice a month, I had to get off of them. What type of seizures are you having again?
I am not sorry I did the surgery at all. But I do feel I wish I knew more about the alternatives sides first now, for I am getting alot of help there too. It is truely hard to say.
I had spots all over the brain so they only could only do some because of my speech...it was from dehydration as a child from being sick.
good luck with your decision
If you have more question be sure to ask for there is not many people who have had it done.
Lisa
RE: Multiple Subpial Transections, anyone??
Submitted by angel_lts on Mon, 2005-08-01 - 08:02
Sophie
The surgery is for people who have problems in the area were there is speech, functions..... I have had this done four times. I am not seizure free. It took about 10 to 15 seizures away a month. They will place 100's of cuts in the brain to stop the seizures from flowing across the brain.
This was in 96' and 97' At one time they had to stop surgery for my speech was going. They pulled me out for I was not able to finish my sentences. Four days later I was doing better and I went back in for the surgery.
Now years later, I am noticing, memory is bad, but that can be from meds, seizures or surgery. As I noticed that, when I type if I think of a word like of, I will type in for and so forth. So it has gotten worse and I have to read over what I write. Or a word that sounds the same and I am typing the other word that also sounds the same.
If you have anymore questions let me know. FOr I was the eighth person to get it done in philadelphia. Where are you getting this done?
Take care
lisa
http://health.groups.yahoo.com/group/EpilepsyApproach/
Sophie
The surgery is for people who have problems in the area were there is speech, functions..... I have had this done four times. I am not seizure free. It took about 10 to 15 seizures away a month. They will place 100's of cuts in the brain to stop the seizures from flowing across the brain.
This was in 96' and 97' At one time they had to stop surgery for my speech was going. They pulled me out for I was not able to finish my sentences. Four days later I was doing better and I went back in for the surgery.
Now years later, I am noticing, memory is bad, but that can be from meds, seizures or surgery. As I noticed that, when I type if I think of a word like of, I will type in for and so forth. So it has gotten worse and I have to read over what I write. Or a word that sounds the same and I am typing the other word that also sounds the same.
If you have anymore questions let me know. FOr I was the eighth person to get it done in philadelphia. Where are you getting this done?
Take care
lisa
http://health.groups.yahoo.com/group/EpilepsyApproach/