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Risk of left temporal lobe surgery

I am 30 and have had epilepsy for about 7 years over that time things havent improved, they have gradually got worse. I recently went to see my neuro and i was very surprised that the first thing he mentioned was surgery. However he did say that because it is my left temporal lobe, the surgery would be too risky. He mentioned that my memory and my speech could be effected. So he said that i have to just keep persevering till i find a medication that works!! Im not sure if it is the fact that i live in New Zealand and things
like that are extremely expensive and the public health system
here isnt very good.

I have been reading peoples stories about the success that they have
had with temporal lobe surgery and i would like to be able to think
that it can work for me too.

If anybody else has been given these warnings but  been able to go ahead with the surgery, it would be good to know how you did it.

Thanks 

Comments

Re: Risk of left temporal lobe surgery

My son had his left hippocampus removed on May 20, 2009.  He had scar tissue in the hippocampus that was causing his seizures. His WADA test was inconclusive for speech loss but the docs felt he was an excellent candidate for surgery. He is doing fantastic.  He forgets a word now and then, but it doesn't bother him.  The surgery recovering isn't easy.  He had extreme headaches for 3 - 4 weeks and his whole head was swollen.  But he felt it was all worth it if he could be seizure free.  I don't know if your situation is similar to my son's (he is 28 years old), but continue to gather information and don't give up!  We didn't.  Good Luck! 

Re: Risk of left temporal lobe surgery

Hi I went through 6 months of testing. I was told that I might have to learn to walk and talk again. I had surgery on my left temporal live. I woke up talking. I went back to work 6 wks later. If you have surgery make sure you get yourself healthy first. Eat well exercise makes alot of difference . And go in with a positive addititute. Most of all Pray and have people pray for you God is Good it's been 17 years seizures free!!!!

Re: Risk of left temporal lobe surgery

Hi Debi, I'm curious where you had your surgery.  My epileptologist frightened me today because some of his patients have lost an eye while sitting and falling forward at the edge of a desk.  My desk is round, but the file cabinets are sharp.  A lot of things in this place have sharp edges and I have drop attacks.  I thought the helmet was enough.  Now I'm terrified!  He claims that 1 out of 50 or 2% of the population have a stroke or other serious brain damage.  I don't know what to do.  The memory is in the Left temporal lobe!!  Are you the exception or the rule? 

Re: Risk of left temporal lobe surgery

I had szs for 36 years and finally threw in the towel and had the lobectomy (left temporal lobe, amygdala and hippocampus) .  I have been seizure-free since surgery in 2005.  I have been med-free since 2010.  I continued to recover from coming off meds.  The side effect of lamictal seemed to cause more problems than the seizures and the surgery.  I started on meds in 1970, so I guess since I had problems with the left-side, my right side picked up the slack. If meds aren't working for anyone, see if you qualify for surgery and investigate the keto-diet or atkins diet (or both).

Re: Risk of left temporal lobe surgery

Thank you for the info.  I need to get off these AEDs.  I'm taking Clonazepam, Dilantin, Lamictal, and Vimpat.  After a seizure I take Lorazepam, if I know to take it.  I usually don't know I had a seizure, because I'm alone most of the time.  Thanks.  I will consider it.  I don't want to, but I've got to get off all these AEDs.  Not only are they extremely expensive, they're also poisoning my body.  Hopefully, once I at least reduce the dose I'll be able to think more clearly.

 

Re: Risk of left temporal lobe surgery

Hello, my husband thew in the towel after 17 years and is moving forward on May 7th. HOw was your Wada test prior to surgery? Did you have the 2 step surgeries.. mapping and then resection? Are you staying on a ketogenic type diet or how long did you follow that type of diet? I am sorry for all the questions... as the date nears us, anxiety is high!

Regards ajard

Re: Risk of left temporal lobe surgery

GOD
Debi, I admire your courage.

I never knew nor cared to know anything about Epilepsy for most of my life.

But,
for the last 10 years, accepting my Grand mal seizures have been far more
difficult beyond accepting the medical options, even tough, CONTEMPLATING to
seek "Surgery" has crossed my mind many times over, even though I'm
NOT even so sure, the "Surgery" will answer my prayers.

Thank
you for sharing your achievements, for you have inspired me to consider the
option.

It’s
people like you who give me hope that one of these days, I just have to go
through it, "SURGERY",

Wishing
you all the best!!!

Ghebre

Thanks God for this site, I have come to love this site,,, Epilepsy.com,
for I learned more about my misery in here than in the hospitals.

 

Re: Risk of left temporal lobe surgery

I hope you make the right decision.  I had the surgery after going through every test you can imagine.  I have compelx partial petit mals.  When I'm holding a conversation, I tell the definition of the words that my daughter can use who is 13.  Her vocabulary is better than mine.  After the surgery I was seizure free for 2 years.  The dr finally picked the drug that worked after 8 years.  I started having them when I was 22.  They said it was from scar tissue from a high fever when I was a baby.  Another dr. said that they did not take all of the scar during surgery so extra pathways found their way back to the tissue.  Find the right dr and good luck.

Roxanne

Re: Risk of left temporal lobe surgery

Hi Roxanne.. you posted this in 2009. My husband was suppose to have the surgery in November.. but now are rescheduled for may of this year... I was wondering how you were & where you had your surgery. Thank you ! Amanda

Re: Risk of left temporal lobe surgery

I had a surgery in Atlanta, GA on my left temporal lobe-scar tissue- and my doctor told me we had to go through 2 years of testing to make sure that area was operable, and it was so he operated. 

My surgery went well, and now I am feeling like a natural person.

I want to wish you good luck with that surgery.

Debbie Howard

Re: Risk of left temporal lobe surgery

Hi Davinc13,

I would be glad to shed some light on this topic for you. I have temporal lobe epilepsy and have dealt with complex partial seizures my entire life up to 4yrs ago.. Let me just say, this type of epilepsy is refractory in that there is no med or combinations of meds that will give you siezure freedom.This type of epilepsy does have a greater success rate thru surgery than others in that it can help you acheive seizure freedom ...

There are risks with all types of surgeries as a general rule. Modern technology has in fact enhanced the proceedures and has made it safer in the long run. As for your memory & speech being affected, that  all depends on what part of your brain holds your memory & speech. I had surgery 4 yrs ago but prior to that I had a series of testing done to find out where my speech& memory were.It was a Wada test. My memory & speech were on the right side which made me a candidate for surgery. Again the risks of surgery is like no other surgery. I am from boston ma and have had fabulous treatment thru an epilepsy center. Dont give up on yourself, temporal lobe epilepsy is said to be the easiest surgery of all with the greatest results too. good luck & good health to you babzy

Re: Risk of left temporal lobe surgery

Hi Davnic13,

My son Jacob just had this surgery, 4/2/13-4/19/13 and is out of the hospital now recovering at home. Jake had been told since he was 9 years old that his seizure spot was deep in his speech, memory, and vision area of his brain, and surgery wasn't an option.

So we tried the VNS, medications, everything, and Jake continued to get worse. Now 19, Jake told his doctor he didn't have a life, and we needed to do something! Our Doctor ordered all the tests, took about 6 months to complete. All tests did come back showing his seizure area to be in a problematic spot in the brain.

Once the electrodes were surgical placed, and the mapping began, the doctors were very surprised to discover that Jake's seizure spot was really a mass that had pushed most of his functioning to the outer edges. Something they wouldn't know unless the mapping is done. The mass was removed and so far Jake is seizure free and functioning fine. A little bit of his peripheral vision in his right eyewas clipped, but he says it's hardly noticable.

It probably is too early to claim victory, but Jake went into surgery hoping for a seizure reduction, never realized seizure free could be an option.

It's a hard decision to made going through double brain surgery, but I think technology is on your side, they can do some amazing things these days. Surgeons are looking at epilepsy surgery more carefully as an option for those with uncontroled seizures. The outcome doesn't have to be seizure free, maybe just improved.

Best of luck to you, good affordable health care is a problem all over the world isn't it? And brain surgery isn't cheap! I hope my story helps you, take care.

Jake's Mom