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2 rounds of seizure medicine fail and then surgery?

Fri, 10/31/2008 - 12:29
Is it normal to have surgery for epilepsy after two types of seizure medicine fail? What has been other people's experiences been? I have had both Zonegran and Depakote fail alone and need additional medications. Now my neurologist is recommending surgery.

Comments

Re: 2 rounds of seizure medicine fail and then surgery?

Submitted by atu276 on Wed, 2008-11-05 - 01:48

Hi MichaelKat I have been on just about every med they came out with in my 44yrs of having

sz. Finially in August of this year I called the doctor and told them I wanted the surgery and we

started the test and within 8 months I had it done, and so far as Sassy would say knock on

wood everything is fine. I hope this helps you in some way.  Good Luck

Lynn

 

 

 

 

 

 

Hi MichaelKat I have been on just about every med they came out with in my 44yrs of having

sz. Finially in August of this year I called the doctor and told them I wanted the surgery and we

started the test and within 8 months I had it done, and so far as Sassy would say knock on

wood everything is fine. I hope this helps you in some way.  Good Luck

Lynn

 

 

 

 

 

 

Re: 2 rounds of seizure medicine fail and then surgery?

Submitted by roxibaby16 on Wed, 2008-11-05 - 13:32
i've tryed 10 seizure meds then had surgery so yea its normal

Re: 2 rounds of seizure medicine fail and then surgery?

Submitted by vande_2004 on Wed, 2008-11-05 - 21:09

Hello Michael,

My name is Greg, and I've been through the process of trying every med available for temporal lobe epilepsy.  Many of these I was getting for free due to them still being tested in Canada, and not approved yet.  When none of the meds that were available back in 1989 had worked, and I had had epilepsy for 8 years, I underwent my first surgery.  After undergoing this, I was seizure free for over 2 years and out of nowhere, it then came back worse than ever.  Instead of complex partials, I would go long periods without a seizure while my body became used to whatever meds I was taking.  Once it got used to those meds, it would be grand mals and status epilepticus.  One combo they used controlled the seizures for 10 months, then I had seizures which they said I wouldn't recover from.  I was in status epilepticus for over 12 and a half hours.  The first seizure is listed on file as lasting 10 hours 10 minutes, the second 2 hours 32 minutes.  I know that it was actually clusters of hundreds of seizures, not just a single seizure but that is how it is on record.  A little over a month later, I went back to the Dr. in outpatients and laughed in his face, I fully recovered.

The grand mals continued until 2001 when I had a Vagus Nerve Stimulator implanted.  This device stopped the grand mals, and I began having the simple & complex partials again.  I went through the process of trying every med available, and it was easy to see the seizures and my memory were getting worse all the time.  In 2006 I was tested for surgery, and after tested, instead of just being put on the regular waiting list of about 4 to 6 months for the surgery, I was put on what they called "The Emergency List."  Every complex partial I was having involved both temporal lobes simultaneously, and the amount of electrical activity was so high, it was unexplainable why all my seizures weren't grand mals.  They also said the seizures were damaging my memory, and if I didn't have the surgery I'd eventually have a memory like someone with alsheimers.  Thanks to the emergency list I only waited 2 weeks.  Someone's surgery was postponed a day in advance so I was called to take their place.  This surgery was mainly to prevent further memory damage, but hopefully it would help the seizures.  It did help them slightly.

What has really made a big difference was what I refer to as my Christmas Present last year.  On December 21, 2007, the battery was changed in my Vagus Nerve Stimulator.  At this time, they also changed the settings to "Rapid Cycle Protocol."  It now sends a shock lasting for 7 seconds, turns off for 12 seconds, then another 7 second shock, etc.  Since this change, the Complex and Simple Partials have dropped to 2 to 4 per month, and the majority are under 2 minutes so I will go right back to work not even realizing I had a seizure.

There are a number of medications, or combos of meds, still out there for you to try if you do not wish to go forward with the surgery just yet.   Also, if tested for surgery and they say you are not a candidate, there's the Vagus Nerve Stimulator, which has been the turning point of my life.

All the Best

Greg

Hello Michael,

My name is Greg, and I've been through the process of trying every med available for temporal lobe epilepsy.  Many of these I was getting for free due to them still being tested in Canada, and not approved yet.  When none of the meds that were available back in 1989 had worked, and I had had epilepsy for 8 years, I underwent my first surgery.  After undergoing this, I was seizure free for over 2 years and out of nowhere, it then came back worse than ever.  Instead of complex partials, I would go long periods without a seizure while my body became used to whatever meds I was taking.  Once it got used to those meds, it would be grand mals and status epilepticus.  One combo they used controlled the seizures for 10 months, then I had seizures which they said I wouldn't recover from.  I was in status epilepticus for over 12 and a half hours.  The first seizure is listed on file as lasting 10 hours 10 minutes, the second 2 hours 32 minutes.  I know that it was actually clusters of hundreds of seizures, not just a single seizure but that is how it is on record.  A little over a month later, I went back to the Dr. in outpatients and laughed in his face, I fully recovered.

The grand mals continued until 2001 when I had a Vagus Nerve Stimulator implanted.  This device stopped the grand mals, and I began having the simple & complex partials again.  I went through the process of trying every med available, and it was easy to see the seizures and my memory were getting worse all the time.  In 2006 I was tested for surgery, and after tested, instead of just being put on the regular waiting list of about 4 to 6 months for the surgery, I was put on what they called "The Emergency List."  Every complex partial I was having involved both temporal lobes simultaneously, and the amount of electrical activity was so high, it was unexplainable why all my seizures weren't grand mals.  They also said the seizures were damaging my memory, and if I didn't have the surgery I'd eventually have a memory like someone with alsheimers.  Thanks to the emergency list I only waited 2 weeks.  Someone's surgery was postponed a day in advance so I was called to take their place.  This surgery was mainly to prevent further memory damage, but hopefully it would help the seizures.  It did help them slightly.

What has really made a big difference was what I refer to as my Christmas Present last year.  On December 21, 2007, the battery was changed in my Vagus Nerve Stimulator.  At this time, they also changed the settings to "Rapid Cycle Protocol."  It now sends a shock lasting for 7 seconds, turns off for 12 seconds, then another 7 second shock, etc.  Since this change, the Complex and Simple Partials have dropped to 2 to 4 per month, and the majority are under 2 minutes so I will go right back to work not even realizing I had a seizure.

There are a number of medications, or combos of meds, still out there for you to try if you do not wish to go forward with the surgery just yet.   Also, if tested for surgery and they say you are not a candidate, there's the Vagus Nerve Stimulator, which has been the turning point of my life.

All the Best

Greg

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