New Here

[pfincher]

Hello All,

I stumbled on this site when looking for more people to talk to about my condition (I have been on my.epilepsy.com for a while but it seems pretty quiet lately). Well about me, I have had complex partial seizures since I was 20 (now 43). My very first seizure was of the Tonic Clonic variety. After getting on Dilantin I started only having complex partials once a month or so. A few (3 or 4) years ago they came on with a vengeance and I started having 4 or 5 a week. I was placed on TopaMax (in addition to Dilantin) to no avail. I was then switched to TopaMax and VimPAT and still had issues. I was then placed on VimPAT and Keppra and referred to an epileptologist (last April). Since then I have been going through the testing for surgery. They determined my issues are due to a lesion on my Left Temporal Lobe (schizencephaly) which also causes weakness on my right side. I have my last test on June 12 (MEG) and then they have their surgical review on June 26th.

The doctors are hoping a Left Temporal Lobe Resection will reduce/remove the seizures (the tests show that all my functionality, speech, memory, etc. is on the right side of my brain). I don't care about taking meds (although I would prefer a lower dosage). I can only hope with surgery the meds will work for me.

God has blessed me with a wonderful wife and three beautiful little girls and I just pray that I can get to where this is no longer a burden to them.

Thanks for reading my story,
Paul

 

[Crash]

Hi Paul
Welcome to CWE,you certainly stumbled your way to the right place.I have found this site to be great,very educational also everyone is great.Theres always someone online to speak to or help answer your questions,theres a lot off people with a lot off diffirent experiences so you wont be stuck for advice for long,thats for sure.

Hope you stick about,im sure you will.

All the best.

 

[Nakamova]

Hi Paul, welcome to CWE!

I hope that surgery ends up controlling your seizures. It's a big step, so make sure you're completely comfortable with the idea before going forward. There are a number of CWE members who have gone through surgery, so you should be able to get good advice from them about what might lie ahead.

Best
Nakamova

 

[DadofTwins]

A Big Welcome to You!

Welcome Paul!

This is a great place with kind and knowledgeable, members who are willing to share their thoughts and experiences. I have learned so much from these wonderful people and I hope you do too!

Tom

 

[chop456]

Welcome. CWE is a wonderful place full of caring and helpful members. Please keep us updated on the progress you are making.

Beth

 

[CQ:)]

Hi Paul

Welcome to CWE.

I have left front temporal lobe epilepsy which is from scarring on my brain, I tried 5 different Anti Epilepsy Meds between 2002 - 2009 with none controlling my partial seizures.
In the end my Neurologist suggested I think about having brain surgery & sent me to an Epitiologist. I met the Epitiologist & had all the pre surgery tests done in 2010.
I had my surgery (left front temporal laboctomy) done in March last year & so far am over 12 months seizure free.
Before the surgery I was on Tegretol 400mg (twice day) & Keppra 1000 mg (twice day)
In March this year I had my 12 month review with the neurologist & he reduced my Tegretol to 200mg (twice day) but kept my Keppra the same. I stay on this new doseage for 6 months & go back to see the Neurologist in September. Our goal in the long run is to eventually have me only on 1 med but a lower dose.

Good luck with the surgery & if you have any questions about surgery, feel free to ask.