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Long Term Effects of Temporal Lobectomy

Fri, 05/29/2009 - 21:33
Hi all!  I am 28 years old.  I had a left temporal lobectomy August 2005 for partial seizures.  Three years later, I am still completely seizure free and medicine free!  If you are post-surgery, maybe you can answer some questions for me like- what kind of scars do you have?  Is your forehead still a little uneven?  What about bumps under the skin? Would love to hear from others in the same situation!

Comments

Re: Long Term Effects of Temporal Lobectomy

Submitted by lisam11463 on Sun, 2009-06-14 - 19:06

"Changing the misconceptions society has about epilepsy, by educating one person at a time"....Lisa-Marie Kinsman Author of "Free at Last, My Lifetime Battle to Overcome Epilepsy".

 

Hello qwerty, I am so thrilled to hear that the surgery worked for you!  I had left mesial temporal lobectomy done fourteen and a half years ago and have been completely seizure-free ever since.

In answer to your questions, no my forehead is not uneven.  The only "bumps" that I have would be my 10" scar.  My scar is still to this day extremely sensitive if I rub my head the wrong way, and my left temple is still a bit numb like a slight case of frostbite.  But I can live with that.  It sure beats me having hundreds upon hundreds of seizures every single month.  I owe my life to the wonderful doctors and nurses at SUNY Upstate Medical Center in Syracuse, New York.

I am still on Tegretol XR and will be for the rest of my life.  My night time dosage was cut in half about 7 years ago, I went from 400mg at night to 200mg.  I was told by two top notch Epileptologists that for me to completely be weaned off of Tegretol XR, I would have to surrender my driver's license for the six months it would take to completely wean me.  I was also told that there was a 30-40% chance that I could have a few seizures while weaning or my seizures could come back full force like before my surgery.  That's not a chance I am willing to take.  I would much rather make the drug company rich than to ever risk losing my wonderful freedom.

I got my driver's license at the age of 33 for the first time in my life and I just LOVE it!  I wouldn't give up my driver's license for all the money on earth.  It's the most wonderful feeling in the world not to be dependent upon anyone anymore.

I've now been an epilepsy advocate and counselor online since 1995, and although it is strictly volunteer I am always so thrilled to hear when someone else becomes seizure-free like myself.  That right there is the best way in the world I can think of getting reimbursed for the thousands of hours I put in each year to help others.   To hear someone else say they are glad they had the surgery done and are now seizure free is worth its weight in gold to me.  

I want to wish you many many more years of being seizure-free and all the happiness in the world.

 

Lisa-Marie

"Changing the misconceptions society has about epilepsy, by educating one person at a time"....Lisa-Marie Kinsman Author of "Free at Last, My Lifetime Battle to Overcome Epilepsy".

 

Hello qwerty, I am so thrilled to hear that the surgery worked for you!  I had left mesial temporal lobectomy done fourteen and a half years ago and have been completely seizure-free ever since.

In answer to your questions, no my forehead is not uneven.  The only "bumps" that I have would be my 10" scar.  My scar is still to this day extremely sensitive if I rub my head the wrong way, and my left temple is still a bit numb like a slight case of frostbite.  But I can live with that.  It sure beats me having hundreds upon hundreds of seizures every single month.  I owe my life to the wonderful doctors and nurses at SUNY Upstate Medical Center in Syracuse, New York.

I am still on Tegretol XR and will be for the rest of my life.  My night time dosage was cut in half about 7 years ago, I went from 400mg at night to 200mg.  I was told by two top notch Epileptologists that for me to completely be weaned off of Tegretol XR, I would have to surrender my driver's license for the six months it would take to completely wean me.  I was also told that there was a 30-40% chance that I could have a few seizures while weaning or my seizures could come back full force like before my surgery.  That's not a chance I am willing to take.  I would much rather make the drug company rich than to ever risk losing my wonderful freedom.

I got my driver's license at the age of 33 for the first time in my life and I just LOVE it!  I wouldn't give up my driver's license for all the money on earth.  It's the most wonderful feeling in the world not to be dependent upon anyone anymore.

I've now been an epilepsy advocate and counselor online since 1995, and although it is strictly volunteer I am always so thrilled to hear when someone else becomes seizure-free like myself.  That right there is the best way in the world I can think of getting reimbursed for the thousands of hours I put in each year to help others.   To hear someone else say they are glad they had the surgery done and are now seizure free is worth its weight in gold to me.  

I want to wish you many many more years of being seizure-free and all the happiness in the world.

 

Lisa-Marie

Hello Lisa

Submitted by Kaleem on Tue, 2018-01-23 - 17:33
So nice to hear you are seizure free and have been in good health. I am trying to get as much information as possible about surgery for my son. I am planning on taking him to Cleveland Medical clinic. Local surgeon in Indy who is awesome has suggested to using subdural electrodes but I want to know if there are better diagnostics available. What kind of diganostics were used in your case? Which ones are best. We had MRI, EEG, Functional MRI done and have been on Depakote, Trileptal, Zonegran. I would highly appreciate if you can get in touch with me. kaleembaig@yahoo.com

Re: Long Term Effects of Temporal Lobectomy

Submitted by bella0809 on Wed, 2009-07-22 - 22:17

Hi qwerty.

I had the lobectomy for left temporal lobe in December 2005 by Dr. Doyle.  Maybe we had the same doc?  It's been amazing to be sz free, as I'd had them since I was 8 years old.  I hated what the meds were doing and I definitely began to feel a decline in intelligence, so I finally bit the bullet and got the surgery.  I'm down to 75 mg of Lamictal a day, but don't think I'm going to go lower.  guess I can live with it.  I have a scar across my forehead that most people think is a wrinkle.  It's where I was clamped to the table.  I had it taped, so I saw it when I watched the video.  I have long hair, so you can't see the scar, but if I pull it back and point to it, you could see it.  I don't like the feeling of the screw occasionally and I think the cause headaches when the weather changes, but I'll take it in exchange for no more seizures.

 

Ann

 

 

Hi qwerty.

I had the lobectomy for left temporal lobe in December 2005 by Dr. Doyle.  Maybe we had the same doc?  It's been amazing to be sz free, as I'd had them since I was 8 years old.  I hated what the meds were doing and I definitely began to feel a decline in intelligence, so I finally bit the bullet and got the surgery.  I'm down to 75 mg of Lamictal a day, but don't think I'm going to go lower.  guess I can live with it.  I have a scar across my forehead that most people think is a wrinkle.  It's where I was clamped to the table.  I had it taped, so I saw it when I watched the video.  I have long hair, so you can't see the scar, but if I pull it back and point to it, you could see it.  I don't like the feeling of the screw occasionally and I think the cause headaches when the weather changes, but I'll take it in exchange for no more seizures.

 

Ann

 

 

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