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surgery at 40

Tue, 12/07/2004 - 01:55
I was diagnosed with grand mal seizures at the age of 13. I was really scared about the hole situation at hand, i have heard that there are surgerys that can help, but not sure if it is right for me...I have been seizure free for almost 5yrs now. I also found out that the medication that i take causes weight gain and liver damage. If there is anyone out there that has had any of the surgerys that they perform on seizure's can you please write back...... thanks 4 your time

Comments

RE: RE: surgery at 40

Submitted by dfriedman on Mon, 2005-05-30 - 16:59

Wendy,

Please email me!  dfriedman@sbcglobal.net .  I too am getting ready for surgery for complex partial seizrues.  I too have them every 4-8 weeks and no medication has been able to stop them.

I think you and I are in the same boat.  Please email me, I would love to hear from you!!

 

Diana

Wendy,

Please email me!  dfriedman@sbcglobal.net .  I too am getting ready for surgery for complex partial seizrues.  I too have them every 4-8 weeks and no medication has been able to stop them.

I think you and I are in the same boat.  Please email me, I would love to hear from you!!

 

Diana

Re: RE: RE: surgery at 40

Submitted by dawlew on Fri, 2006-02-03 - 05:46
Hi was wondering how you went with surgery. Did you go through with it? It strikes me as odd that doctors recommend surgury for seizure activity of a one to two month interval, however you are the one who would best know how it effects you. Our girl K, 14 yrs ols has had similar epilepsy for 4-5 yrs now. Only in her case she has seizures up to 8 or 10 per day. At this level we are trying to weigh the pros and cons of surgery as it was just recommended today. Drugs have not worked and it does not seem to be any worse without them, we just lose the side effects. Any way would be interested to hear how things faired for you. Thanks Dave

RE: surgery at 40

Submitted by BillM on Tue, 2004-09-28 - 16:29

I had surgery at age 50 ... and it was one of the best decisions I ever made!

My seizure history is: A grand mal "out of nowhere" in the middle of the night, at age 35 (well, 34.9); fully controlled by a single medication, except during one 36-hour period, three years later, when I forgot to take it (duh!).  

Then, a few months after that, my seizures "morphed" and I began having complex partials.  These, too, were controlled by (an additional) med, for nearly 8 years... at which point complex partials began to occur, again; several other meds were tried, but none was fully successful at controlling them.

When surgery was suggested, I resisted ("my brain is my life!")... but I finally agreed that meeting with a specialist, at a first-rate epilepsy center where such surgery might eventually done, was a good idea.

With the help of the good folks at braintalk.org ... I figured out what questions I had to ask, to find "the best epilepsy center" (to my satisfaction).  I've always been fond of the "get the best you possibly can" approach... and it paid off!

After meeting with the director of the epilepsy center that I chose, I decided that getting *evaluated* for surgery was very low-risk, and would settle the question of whether I was even a candidate for surgery.  I had, by that point, been unable to drive for about 3 years, and was having multiple seizures weekly, with associated injuries.

I went through the evaluation, and it was determined that I was, indeed, a good candidate.  A month or so after the evaluation, I had my Final Seizure... thank you, God!   A few weeks later, a last pre-surgery test indicated that there was, nonetheless and indeed, a malfunction in my right temporal lobe... which was clearly doing me more harm than good! 

In light of that (very conclusive) result, we proceeded with the surgery a few weeks later, on a Thursday; the following Monday, I was home... and five months later, I took delivery of my new car!

Since then, my medication has been progressively reduced. I'd be on just a single med, at this point, other than personal choice because of some of the psychological side-effects that I experience when *changing* the dosage of the second medication; this just wasn't the right time to go through that, again.

Surgery is often not considered until well down the road, because people are scared of it.  There are some clinical studies suggesting that patients do better, in terms of their overall life quality, when surgery is considered sooner, rather than spending months or years playing "medication roulette."

Here's a news report, from August 2003, on that point... http://www.thebostonchannel.com/health/2392333/detail.html ... and, a subsequent report, which includes a video interview with a patient: http://www.thebostonchannel.com/health/2666883/detail.html .

(Neither of the hospitals referenced in those articles, is the one I chose... and, those articles didn't appear until well after my surgery.)

 

I had surgery at age 50 ... and it was one of the best decisions I ever made!

My seizure history is: A grand mal "out of nowhere" in the middle of the night, at age 35 (well, 34.9); fully controlled by a single medication, except during one 36-hour period, three years later, when I forgot to take it (duh!).  

Then, a few months after that, my seizures "morphed" and I began having complex partials.  These, too, were controlled by (an additional) med, for nearly 8 years... at which point complex partials began to occur, again; several other meds were tried, but none was fully successful at controlling them.

When surgery was suggested, I resisted ("my brain is my life!")... but I finally agreed that meeting with a specialist, at a first-rate epilepsy center where such surgery might eventually done, was a good idea.

With the help of the good folks at braintalk.org ... I figured out what questions I had to ask, to find "the best epilepsy center" (to my satisfaction).  I've always been fond of the "get the best you possibly can" approach... and it paid off!

After meeting with the director of the epilepsy center that I chose, I decided that getting *evaluated* for surgery was very low-risk, and would settle the question of whether I was even a candidate for surgery.  I had, by that point, been unable to drive for about 3 years, and was having multiple seizures weekly, with associated injuries.

I went through the evaluation, and it was determined that I was, indeed, a good candidate.  A month or so after the evaluation, I had my Final Seizure... thank you, God!   A few weeks later, a last pre-surgery test indicated that there was, nonetheless and indeed, a malfunction in my right temporal lobe... which was clearly doing me more harm than good! 

In light of that (very conclusive) result, we proceeded with the surgery a few weeks later, on a Thursday; the following Monday, I was home... and five months later, I took delivery of my new car!

Since then, my medication has been progressively reduced. I'd be on just a single med, at this point, other than personal choice because of some of the psychological side-effects that I experience when *changing* the dosage of the second medication; this just wasn't the right time to go through that, again.

Surgery is often not considered until well down the road, because people are scared of it.  There are some clinical studies suggesting that patients do better, in terms of their overall life quality, when surgery is considered sooner, rather than spending months or years playing "medication roulette."

Here's a news report, from August 2003, on that point... http://www.thebostonchannel.com/health/2392333/detail.html ... and, a subsequent report, which includes a video interview with a patient: http://www.thebostonchannel.com/health/2666883/detail.html .

(Neither of the hospitals referenced in those articles, is the one I chose... and, those articles didn't appear until well after my surgery.)

 

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