Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
surgery at 40
Tue, 12/07/2004 - 01:55Comments
Re: RE: RE: surgery at 40
Submitted by dawlew on Fri, 2006-02-03 - 05:46
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.)
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