A Second Chance, with a different meaning?

[2ndchances]

Soon after my right temporal lobe resection in 2001, I realized that I was getting a second chance at life. Over time, I was completely weaned off my medications, I got my driver's license back, I got my life back. 2ndchances (or a variation of) became the name of my blog, or a username, as it did on this site. It served as a reminder to me, to continue to appreciate the things in life that I had once taken for granted.

The seizures came back in May, and since then, I've tried Dilantin, Keppra, Vimpat and Phenobarbital, with no control. (We didn't bother to reattempt the Epival, Neurontin, or Tegretol that I was on years ago). My video EEG was done in December, and on Friday, I received a letter in the mail with a scheduled appointment with the Neurosurgeon on March 22 to discuss surgery.

I never thought I'd have to consider giving brain surgery a second chance.:tdown:

As I anxiously await this appointment, I have so many questions. Things such as risks, and increased risk of another surgery in the same area? If this will be any different than the previous surgery, and what negative impacts could I expect if I chose not to. Probably about 48,259,327 other questions floating around in my head at any given moment. :loco:

I know a few of you have had multiple surgeries in the past... and while I know everyone and every situation is different, I'd appreciate others' :twocents:. Worthwhile vs. too risky? Anything that I should consider or that I should add to my list of questions for the surgeon when I meet with him next month?

Thanks!

 

[arnie]

I have never had surgery, but I had a neuro who kept telling me I should have, because my partial szs are not well controlled with meds. I have had over 10,000 in the last 30 years and probably many more throughout my entire life. I have only had five (that I know of) t/c szs. At this stage I would never consider surgery, because I can live with my partials and their side-effects, and the meds and their side-effects. If I had surgery there would be no turning back, and there are too many risk factors. I don't know how bad your szs were, but I have decided that I can live with mine. I have been on a couple of meds that had awful side-effects, but I was able to simply stop taking them and I had no more problems. Surgery is like a tattoo; pretty much forever!
I don't know if this is helpful since I have never had surgery, but I do know that once they start cutting on you there is no going back. No matter how much they think they know about your brain and what they are going to do to it, it's an educated guess at best. Just my 2 cents. All the best to you. It's a tough decision. Cheers!

 

[2ndchances]

Thanks arnie, yes, it's very helpful, and I appreciate it! Definitely a tough decision...

 

[Cint]

I had a Left temporal lobectomy and was seizure free for 14 months. After my surgery, the seizures were worse than before, from CPs to TCs also. My neurologist suggested a 2nd surgery for me also, but after more testing and speaking to the neurosurgeon, he said a 2nd surgery for me would be too risky. The damaged area causing my seizures is deep in the hippocampus and if he were to go there, I would end up like an end stage Alzheimer patient; unable to remember or speak. So we tried many more medications and in 1998 I had the VNS and it is what works best for me, although it is not a cure all, but it does help with my TCs. And it was a last resort! I will be having my 3rd replacement battery for the VNS within the next month. I hope you have a better outcome than I.

 

[2ndchances]

Thanks Cint! I remember you mentioning your story to me before, you were one of the ones I was thinking of! I certainly need to hear what the surgeon has to say before I even consider anything. I'm glad the VNS has been helping you, and wish you all the best for your procedure next month! Thanks again!

 

[pita300]

My story is simular to Cint. I had a right temporal lobectomy to control complex partial seizures. A few months after sergury I had tonc clonic seizures. My doctor foud a combination of meds that controled the seizures. I went 15 years with out a seizure had my liscense back and was living a faily normal life. Then March of last year I was in the er after having a cluster of seizures. 4 eeg's later 1 video 1 ambulatory and going back and forth between a psychiatrist and the epileptolgist to decide if these were in my brain or in my head the doctors finaly decided they are consistant with focal seizures. Now I'm back on 3 meds and still are not under control. If they can not control them with meds then I also could be a candidate for a 2nd sergury. Sorry I did'nt answer any of your questions but I will be following the thead as I also will have those same questions if I do become a candidate. I wish you nothing but the best.