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Repeat Surgery?

Greetings ALL,

Unfortunately, I was one of the unlucky ones that continued to experience seizures after I had my Right Temporal Lobectomy. The Docs brought me back in the hospital & I had to do the EEG/Long-Term Video monitoring again. The results were the same as before....my seizures were triggered, recorded & left the hospital knowing that they could not find enough for a focal point.

In my first surgery... I had in depth electrodes placed without a grid-mapping.....Now the Docs would like to do the Grid Mapping... find the focal point....& do the surgery in one admission... I am definetley frustrated & do not know what to do.  Before jumping into a second surgery... I have decided to get a second opinion. Dr. Khalil from Vanderbilt suggests I slowly get off Carbatrol since he feels the Lamictal is not as effective with taking both together. I am taking Keppra as well

So turning 28 in two weeks, I am contemplating on having a second surgery..... so far I am still experiecing the seizures.  If anyone has some insight, please do share!

Thanks Much & Be Well,

David Patel

dgpatel80@gmail.com

 

Comments

Re: Repeat Surgery?

i would love to talk had the same surgery same result i also did it w out the grid this time i would do the grid but dont know if i woukld consider it at all i suffered some short termemory from the surg how about you?

 

Re: Repeat Surgery?

i would love to talk had the same surgery same result i also did it w out the grid this time i would do the grid but dont know if i woukld consider it at all i suffered some short termemory from the surg how about you?

 

Re: Repeat Surgery?

 

 Katelin,

 

Sorry, it's been a minute since i have been on... hope you are doing well. I have had some memory loss, but not too bad.  Currently i am testing medication dosages again. I get little auras primarily now. I still want to give it the full 2 years before i make the decision for the surgery again.

 Thanks & Be Well, David Patel

Re: Repeat Surgery?

i would love to talk had the same surgery same result i also did it w out the grid this time i would do the grid but dont know if i woukld consider it at all i suffered some short termemory from the surg how about you?

 

Re: Repeat Surgery?

Katelin,

Yes... i agree.. we definitely need to chat! I'm sorry to hear about you suffering some short-term memory loss.
I thought i did in the beginning but I slowly got into things after some healing & time.

call me anytime: 678-523-6789 email: dgpatel80@gmail.com

take care,
David

Re: Repeat Surgery?

Hi David,

I'm sorry that the first temporal lobe resection didn't control your seizures. When I had my surgery, they implanted both depth electrodes and grid mapping.  I sure as heck wouldn't want to go through it all again! Ugh... getting a second opinion is a good thing.

You may want to check out a group that I started here: Struggling after surgery. My hope was that those of facing these challenges could get together to help one another. Another hope was that we could gain a bit of normalcy by talking with those with similar circumstances.

Take care,

Heather

*refractory seizure surgery on left temporal lobe 03/06*

Re: Repeat Surgery?

Hey Heather,

Thanks alot for the info... I will definitely check out the group you started.... a very good thing you did might I add!
I feel you on the "Ugh!" part.... tired of being in the hospital!!!

take care!

-DP

Re: Repeat Surgery?

Most of the early studies on the efficacy of temporal lobectomies only tracked patients for 6 months. It takes longer than that for the brain to fully heal though. Some more recent follow up studies tracking patients over longer periods of time show that seizures still occur in over 60% of patients after a period of several years.There are some other, highly effective alternatives that you could try including diets (LGIT, modified Atkins, ketogenic), Neurobehavioral / Cognitive Behavioral Therapy (CBT) and EEG neurofeedback. HTH!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Check out my chart of alternative epilepsy treatments.

Re: Repeat Surgery?

I appreciate the info... hopefully if the medication thing does not work... one of these will! :-)

 Thanks & Be Well, David Patel

Re: Repeat Surgery?

They did my first surgery via multiple EEG's and did not do anything else in the 70's.  I waited until the 90's to have my 2nd surgery.  They found my focus on the EEG no depth electrodes, while in surgery they noted it was in my left temporal lobe in my speech center.  I have worked 15 years between surgeries.  I am raising 2 children that are now young adults. Life is a continuous Festival!  I get Simple Partials daily and Partial Complexes through out the week.  I have a Vagal Nerve Stimulator.  I walk 3 miles daily which really seem to help wart off the seizures.( HInt- doing them in the early morning is the trick)  I have had challenges but I have to legs to walk with, I use them!  It gets rid of the mental discomfort and physical too! 

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