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Kylee
New Member


Date Joined Oct 2005
Total Posts : 4
   Posted 10/19/2005 12:41 PM (GMT -7)   
Hey all! I'm new to the whole forum thing but was wondering if anyone had any expirence good or bad with brain surgery? I've been thinking about it a lot and am not sure of all the risk of it but know that if I can't control my seziures it might be something to strongly consider. Let me know yall's input! Thanks!

Kylee
New Member


Date Joined Oct 2005
Total Posts : 4
   Posted 10/19/2005 1:28 PM (GMT -7)   
I've had epilepsy for about 10 years now and am currently taking 3500mg of Keppra a day. I've also been on Lamictal and Tegratol but neither of those helped. I think my Faith in the Lord is really the only thing that keeps me postive about my condition but after reading some of these post and other forums it seems as though I don't have it as severe as most. I average about 1 seziure a week (mostly grand mal) and It's so frustrating to feel like there is nothing out there that can help. I love these forums because it seems like I can actually talk to people who know how hard it is and what it feels like instead of always trying to explain myself!

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/1/2005 10:18 PM (GMT -7)   

Hi Kylee,

I'm sorry I didn't respond sooner, I've just been busy and things are just settling down now.  I had brain surgery just 4 months ago.  I am happy to report that I have had no seizures since the operation.  Although I am still on Lamictal and Zonegran, I am scheduled to begin a gradual tapering of one of them.  I just saw my neuro and he thinks I'm doing well.  I'm trying to get back to a normal routine now that I'm feeling like my energy is returning.  I have headaches and some other problems related to the surgery, but I'm hoping things get better as I continue to heal.  I think it was the best decision I ever made in regards to treating my epilepsy.  Anyone that is a good candidate for the surgery should give it some serious thought.  It was scary for me to make the decision, but now that it's over, I realize it's even scarier if I hadn't done it. 

My friends here at HW have really helped me get through this year.  I know I can always come and see what others are doing, compare notes and maybe offer an ear to listen to someone that needs one. 

Hope the info helps!      Glenda :-) :-)


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/3/2005 12:01 AM (GMT -7)   

Thanks MandiAnn!!  I've always loved reading your posts.  I'll definitely be back as much as I can.

Kylee-  I got several opinions from doctors I trusted before I went ahead with the surgery.  Most of them thought the procedure was pretty straightforward, and the chance of being seizure-free was excellent.  But, of course, my intuition told me that I had to make absolutely sure it was the right thing to do if someone was going to drill a hole through my skull.  I was very happy with the surgeon I chose.  He made sure I knew exactly what was going to happen and took the time to explain everything. 

There was a small, but very real risk of some memory loss or language problems following the surgery due to the location of the tissue being removed.  But, when you look at the potential for harm or even death from having a seizure,  the surgery is a whole lot less risky if it means seizures can be lessened or eliminated.  So, once I got over that mental hurdle, I was ready to have the surgery. 

I feel now, at 4 months post-op, my short-term memory is not quite normal, but I think I am doing fine.  I haven't lost any of my language abilities.  The one thing that hasn't really changed is that I  see these funny lines in my upper right visual field all the time.  It was there immediately after the surgery and hasn't gone away.  Luckily, it doesn't bother me too much.  It's way up high, so at least I'm not annoyed with something right in front of my eyes.  Other than that, I think I'm doing pretty well. 

If there are any other people that have lingering problems from surgery, I'd love to hear how you're doing.

Glenda  :-)  

 


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


Kylee
New Member


Date Joined Oct 2005
Total Posts : 4
   Posted 11/15/2005 4:32 PM (GMT -7)   
Wow I'm so glad I checked this! Thank you so much for your post! I had an appointment with my neuro last Monday about the surgery and he thinks I am a perfect canidate for it. It makes me so happy to hear but so axiouse at the same time!! I'm getting married in March so we went ahead and scheduled the test for May so i don't have to be stressed about a million things these next 4 months! What a relief to hear that you are doing so well! I am so happy for you! I hope all the test go well for me so I can have the surgery also. I feel very at peace with that option knowing that there could be control over the seziures is a huge relief for me and my family! Thanks for the Post! Its truely an encouragement!

dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 3/27/2006 8:21 AM (GMT -7)   
I just had the WADA test and my next step is the Surgery and i am very scared. I am so happy for you. There is a small, real risk of some memory loss or language problems following the surgery due to the location of the tissue being removed on my left temple lobe. I AM SO SCARED.
Thinking about Brain surgery but I am so scared. If you can help me, please do. Mine is on the  left temporal lobe. They say it is deep it my brain.

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