Just finished brain surgery

[vtsammy]

Sorry friends it's been a while. I just wanted to let you guys know what's been going on w/ me. I just recently had brain surgery about 5 weeks ago. There was scar tissue that they wanted to remove only to find that the scar was too far in the area where they speech and memory comes from so they didn't want to mess around there. So they just stapled me back up. I started to have extremely bad headaches a few weeks later and went back to hospital, where they put me on some painkillers. I went back 1 week later for a follow up only to find that they was excess brain fluid that needed to be removed and that's what was causing the headaches. I just got back 1 1/2 weeks ago. Thankfully, the headaches are gone but now I'm back right where I started. I was having absence seizures about every 1-2 weeks and that's why I decided to have the surgery. The neurosurgeon recommended RNS therapy but after much research I wanted to wait until there was more research on it because I just didn't feel comfortable since it was still so new and I didn't want to have surgery to replace the battery ever 2 years. The neurosurgeon also recommended the VNS as an alternative. I'm just in a predicament because since I had such complications w/ the first surgery I don't want to mess around w/ another surgery. I'm almost at the point where I just want to keep taking my current medication and deal with the 1 episode I have ever 1-2 weeks, espcially since it doesn't interfere with my life too much. Any opinions or advice guys? Thanks.

Sam

[speber]

I'm with you. Replacing the batteries on something that's a hit-or-miss didn't attract me either when I found out I wasn't a good candidate for brain surgery.......so I really started looking into the 'alternatives'.

Pick something you're comfortable with...that's for sure!

[Bernard]

Hi Sam, glad to see you back. It doesn't seem like 5 weeks since you last posted. Where does the time go?

Anyway, if you are looking for alternatives, you can look at the chart in my signature. You should get some ideas and you can investigate further from there.

BTW, Stacy (my wife) completely elimnated her absence seizures with EEG neurofeedback.

[Zoe]

Hi Sam,
Sorry the surgery didn't work for you, but take heart, you do have other options!
I had a right temporal lobectomy and some of my pre-frontal lobe removed in a failed attempt to control my seizures in 1988. Long story, but using a combination of behavior modification, diet, supplements, yoga, and neurofeedback, I have been seizure free since 1998.
Don't let the idea of scar tissue spook you. I was told that scar tissue was one of the main causes of my seizures. I had massive scarring from multiple strokes, spinal meningitis, and two brain surgeries. In 1996 I was again evaluated for a possible 3rd brain surgery to try and stop the seizures, but there was too much scar tissue for this to be a possibility. At that point, I just continued with all my non-drug strategies and two years later was seizure free.
You may not find a way to become seizure free, but there are many things you can do to learn to manage seizures on your own. Check out all the links on Bernard's alternatives for starters.
The key, I found, is raising the seizure threshold, finding all the things that may trigger a seizure for you, and address those. The higher you raise your seizure threshold, the less likely you are to have a seizure and no one can predict with certainty how much control you can achieve. You may want to check out this book too, "Epilepsy: A New Approach," by Reiter and Richards. I see used copies of it on Amazon often. I buy them and pass them out to anyone I meet who has seizures. Also, check out the web site for Dr. Andrews' and Dr. Reiters' clinic in California. It is the only epilepsy clinic in the country that emphasizes teaching clients strategies for managing seizures on their own.
http://www.andrewsreiter.com

I suspect that, like, me, you were told that surgery was your "only" hope of ever getting seizures under control. Well, that's just not true. It is a bummer that the surgery didn't work, but it wasn't your "only" hope and I encourage you to keep checking out your other possibilities, and look to this forum for support!

[mike callow]

VTSammy.
Hang in there brother,
A friend
Mike

[RobinN]

Sure glad to see you back, yet sorry that you had such a rough go of it.
Zoe has some wonderful ideas, and she sure has been through it all. Quite an amazing story.

[Birdbomb]

The neurosurgeon recommended RNS therapy but after much research I wanted to wait until there was more research on it because I just didn't feel comfortable since it was still so new and I didn't want to have surgery to replace the battery ever 2 years. The neurosurgeon also recommended the VNS as an alternative. I'm just in a predicament because since I had such complications w/ the first surgery I don't want to mess around w/ another surgery.

The VNS is attached to the vagus nerve. The electrodes coil around the nerve like a spring. Due to the natural formation of scar tissue, the chances of removing these electrodes at a later date is very slim. So it can interfer with future MRI's. When the batteries are EOS (end of service) the entire generator is swapped out because it's hermetically sealed. This can happen as early as 2 years, but because it's attached to the vagus nerve in the neck and not in direct contact with the brain, there is an entire host of potential adverse effects.

I suggest you click on to the link to my site and begin your research.

For some, the VNS has been a God send, for others a devise from Hell. The problem is there is no way of telling if or how it will work for you until it's implanted and activated.

[brain]

Sammy - welcome back and sorry it did not
all work out for you.



But didn't the Surgeon remove what he/she
could or didn't bother at all? I've read some
articles and journals where surgeries had been
performed where they had removed as much
as they could without touching that or those
specific areas, while it didn't eliminate the
seizures entirely, it did reduce it (seizures)
greatly and the meds they were one were
reduced. But then again I guess it all depends
on the location where it all originated from as
the articles and journals I read weren't that
detailed and specific.

But like Birdy said - VNS can go both ways.
VNS can be a wonderful blessing to some
or it can be a nightmare from hell to others.

Neuropace's RNS looks very promising and
looks much more positive than VNS, but
still in the research process.