Should I bring up the surgery conversation with my doctor?

[skyfire322]

My epileptologist had mentioned during my first consultation trying a few different medications since the Zonegran didn't work. So far, the Depakote seems to be working *knock on wood*.

IF my body doesn't respond to either one of the medications, should I bring up the VNS/RNS surgery? I do have generalized epilepsy so it's not documented as much as other types, but I've done some research on it so I know it's pretty much a 50/50 chance it will work, but is it something to be considered?

 

[Fedup]

skyfire322

I think you should ask the question, what is the harm, it will give you more information about it and help you to understand and decide. Mind you in saying that either process is a big decision to make so do not rush into it.

Like you said it is something to consider but you need to know all the facts.

 

[Nakamova]

Folks have had mixed success with the VNS/RNS implants: See these threads:
http://www.coping-with-epilepsy.com/forums/f23/i-would-like-your-opinions-vns-21945/
http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

The VNS implant can't be removed if it stops working/is turned off, so it's important to know the pros and cons.

You could also ask if you might be a candidate for re-sective surgery (where they remove the offending part of the brain), but that's obviously a pretty big step.

 

[skyfire322]

You could also ask if you might be a candidate for re-sective surgery (where they remove the offending part of the brain), but that's obviously a pretty big step.

I might bring that up as well. Since I have generalized epilepsy, it would be difficult since it usually effects to whole brain.

Thank you all for your input!

 

[AlohaBird]

As Fedup said, nothing wrong with getting as much info as possible.

But please, please,please. Don't take it that because one or two things have failed that all other options are hopeless. Take some time. Try some other meds. Try some combinations of meds. Try some combination of meds and ketosis or other alternative therapies like neurofeedback. Try everything you possible can before putting your brain under a knife.

I'm not anti-surgery. I just think that it should be the last ditch option, not something to jump on quickly.

It took me years but I found a combination of meds and ketosis that has me at full seizure control. Don't give up too easily.

 

[Cint]

Folks have had mixed success with the VNS/RNS implants: See these threads:
http://www.coping-with-epilepsy.com/forums/f23/i-would-like-your-opinions-vns-21945/
http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

The VNS implant can't be removed if it stops working/is turned off, so it's important to know the pros and cons.

You could also ask if you might be a candidate for re-sective surgery (where they remove the offending part of the brain), but that's obviously a pretty big step.

There are different VNS generators now that are replaced. They cannot remove the wiring that is around the vagul nerve. There are different settings. What works for one, doesn't work for someone else. I've had mine replaced three times now!! I started with the first one back in 1998 with the first one, a big round one. The last one they replaced was a lot smaller.

http://us.new.cyberonics.com/sites/default/files/how-it-works-basic-page-image_0.jpg

Plus folks have had mixed success with re-sective surgery. I've been down BOTH roads and I would ask the Dr. about the VNS first. But, in my case the temporal lobectomy was NOT successful, even made my seizures worse. The VNS was a lifesaver for me, so it all depends on where your seizures start in the brain. Most docs will go for brain surgery first, unless it's in an area that affects your speech, memory, motor functions, etc. They were going to do a 2nd brain surgery on me, but the MRIs showed that the damage was deep in my hippocampus, therefore if they did operate, I would end up like an end stage Alzheimer patient. I wouldn't remember anyone or anything. So that's why I had the VNS put in. True, they cannot take the VNS out and some haven't done well with it (it isn't a cure-all, either), but there are problems with brain surgery that no one likes to talk about either: Memory loss, depression, aphasia, loss of feelings, and lots of other problems. And it may NOT work either! Nothing is 100%. But it all varies with each individual.

 

[AlohaBird]

Plus folks have had mixed success with re-sective surgery. I've been down BOTH roads and I would ask the Dr. about the VNS first. But, in my case the temporal lobectomy was NOT successful, even made my seizures worse. The VNS was a lifesaver for me, so it all depends on where your seizures start in the brain. Most docs will go for brain surgery first, unless it's in an area that affects your speech, memory, motor functions, etc. They were going to do a 2nd brain surgery on me, but the MRIs showed that the damage was deep in my hippocampus, therefore if they did operate, I would end up like an end stage Alzheimer patient. I wouldn't remember anyone or anything. So that's why I had the VNS put in. True, they cannot take the VNS out and some haven't done well with it (it isn't a cure-all, either), but there are problems with brain surgery that no one likes to talk about either: Memory loss, depression, aphasia, loss of feelings, and lots of other problems. And it may NOT work either! Nothing is 100%. But it all varies with each individual.

Exactly. But it is not the doc's brain under the knife. My question is why would any sane person want to roll those dice unless they were completely out of other options.

 

[skyfire322]

As Fedup said, nothing wrong with getting as much info as possible.

But please, please,please. Don't take it that because one or two things have failed that all other options are hopeless. Take some time....

.... I just think that it should be the last ditch option, not something to jump on quickly.

This is definitely a last ditch option, and I still have my doubts, as this is permanent. I think I'm in the frustrated phase at the moment having to try so many different combinations of medicine which makes my stress levels rocket like a NASA shuttle.

But in the end, I can't give up and will never give up!