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Multiple Subpial Transections, anyone??

Sun, 07/31/2005 - 13:04
I have reflex reading epilepsy, which has been extremely difficult to treat since I was diagnosed 3 years ago.  Have gone through drug after drug.  Have myoclonic, GTC, and partial complex seizures (still); currently on 2 drugs (MD considering a 3rd again). Cannot have VNS, and in theory, not a surgical candidate since seizures originate in Wernickes Area (language center of brain).  Considering pre-surgical eval for MST, a neurosurgical procedure that is supposed to be far less invasive with much less chance of brain damage.  Has anyone had this done, and is it anyone whose seizures originate in a part of the brain that carries out a critical function?  As you can imagine, I'm really anxious about this; any info would be appreciated.  Thanks - Sophie

Comments

RE: Multiple Subpial Transections, anyone??

Submitted by sophie3272 on Tue, 2005-08-02 - 19:44

Lisa,

Thanks for giving some more info to consider.  I'm really sorry you've had such a tough time and had to go through so much.  What is the omega that you referred to that helped reduce your seizures?  Is this a medication?  I'm glad you've been able to reduce the number of them so drastically.  I wonder if now, 7 years later than when you had your MST, they know more about how to avoid the language problems that can happen as a "side effect" of this surgery.  Do you think maybe they do more pre-surgical testing?  I'm wondering: Did you have the Wada test done?  What about the subdural grid EEG monitoring?  But you still have to be on meds, right?  Thanks for your concern about the Topamax.  It's the ONLY drug that HAS worked for me (along with Klonopin).  I've been on it a couple of years now.  I have GTC seizures, myoclonic, and partial complex.  My breakthrough seizures are most often the myoclonic and partial complex (which can progress to GTC if bad enough - fortunately, not often).  But I have to be on such high doses of my meds to prevent that that I have a lot of impairment from them - confusion, memory problems, difficulty thinking clearly, problems with spelling and grammar.  I also never had a headache in my life, but since my seizures, I  have migraines ALL the time.  Sometimes they're so debilitating and I just want to cry.  I also have absolutely no energy from my meds, and also I think because of the seizure activity in my brain (don't you think that has just got to take a toll on you?).  Anyway, I finally got insurance approval to start my tests, so I am scheduled for inpatient video EEG testing and the Wada test beginning August 22, probably for about a week or so between the two things.  I don't yet have approval for the MRI or MEG.  

Thank you for your thoughts and support.  I hope you continue to do better! 

Lisa,

Thanks for giving some more info to consider.  I'm really sorry you've had such a tough time and had to go through so much.  What is the omega that you referred to that helped reduce your seizures?  Is this a medication?  I'm glad you've been able to reduce the number of them so drastically.  I wonder if now, 7 years later than when you had your MST, they know more about how to avoid the language problems that can happen as a "side effect" of this surgery.  Do you think maybe they do more pre-surgical testing?  I'm wondering: Did you have the Wada test done?  What about the subdural grid EEG monitoring?  But you still have to be on meds, right?  Thanks for your concern about the Topamax.  It's the ONLY drug that HAS worked for me (along with Klonopin).  I've been on it a couple of years now.  I have GTC seizures, myoclonic, and partial complex.  My breakthrough seizures are most often the myoclonic and partial complex (which can progress to GTC if bad enough - fortunately, not often).  But I have to be on such high doses of my meds to prevent that that I have a lot of impairment from them - confusion, memory problems, difficulty thinking clearly, problems with spelling and grammar.  I also never had a headache in my life, but since my seizures, I  have migraines ALL the time.  Sometimes they're so debilitating and I just want to cry.  I also have absolutely no energy from my meds, and also I think because of the seizure activity in my brain (don't you think that has just got to take a toll on you?).  Anyway, I finally got insurance approval to start my tests, so I am scheduled for inpatient video EEG testing and the Wada test beginning August 22, probably for about a week or so between the two things.  I don't yet have approval for the MRI or MEG.  

Thank you for your thoughts and support.  I hope you continue to do better! 

RE: RE: Multiple Subpial Transections, anyone??

Submitted by angel_lts on Wed, 2005-08-03 - 07:38

Sophie,

    It is a vitamin/mineral I took it because of memory and I saw all these changes. Doctors were amazed, now they offer it to her other patients.

Well I would hope they would know a little more. You know the MST has been out since the 1975 or so. But I truely doubt that for they are cutting the brain. I believe any surgery will have problems like that.

Yes I had a wada test done and then some. Presurgical. I have had it done. That is what the exploritory surgery is about. It is the grind placed in the brain and then taken out with another surgery. I was turned down for the original surgery and sent home. Depressed for many months. Two years later called make in for the MST surgery. I dont know if you will have that done unless they are so positive that they are going to do this surgery.

I didnt have energy either, when I was on that damn phenobarbital for 27 some years. Finally I got off last year. I feel wonderful. Most of my energy came make. I am still on trileptal though. I am in the middle of just lowering the meds.

Well it is always good that the info is going through with the insurance.

Take care and best of luck with the surgery and I hope you find the rest of your answers with the E.E.G. testing.

You can always e-mail me if you need to get a hold of me too

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

Sophie,

    It is a vitamin/mineral I took it because of memory and I saw all these changes. Doctors were amazed, now they offer it to her other patients.

Well I would hope they would know a little more. You know the MST has been out since the 1975 or so. But I truely doubt that for they are cutting the brain. I believe any surgery will have problems like that.

Yes I had a wada test done and then some. Presurgical. I have had it done. That is what the exploritory surgery is about. It is the grind placed in the brain and then taken out with another surgery. I was turned down for the original surgery and sent home. Depressed for many months. Two years later called make in for the MST surgery. I dont know if you will have that done unless they are so positive that they are going to do this surgery.

I didnt have energy either, when I was on that damn phenobarbital for 27 some years. Finally I got off last year. I feel wonderful. Most of my energy came make. I am still on trileptal though. I am in the middle of just lowering the meds.

Well it is always good that the info is going through with the insurance.

Take care and best of luck with the surgery and I hope you find the rest of your answers with the E.E.G. testing.

You can always e-mail me if you need to get a hold of me too

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

RE: RE: RE: Multiple Subpial Transections, anyone??

Submitted by sophie3272 on Thu, 2005-08-04 - 08:01

Lisa,

Thank you for all your helpful information - I really, really appreciate it.  Thanks for letting me know I can contact you if any more questions come up!  You're really very kind.

Sophie

Lisa,

Thank you for all your helpful information - I really, really appreciate it.  Thanks for letting me know I can contact you if any more questions come up!  You're really very kind.

Sophie

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