Vns question?

[TexasMommy]

I heard the other day about a new treatment called "VNS" or "Vagus nerve stimulation". I am going to ask my doctor about if I was a canidate or not, but I wanted to see what your experiences were if yall had the surgery and if it really works. I have psuedoseziuers and partial complex seizures. I still have them at least once to twice a week (by the way is that normal to be taking your medication regularly and STILL be having them?). Anyone out there been down this road? It looks dark and unknown! lol

[RobinN]

Are you getting regular therapy? I was told with the introduction of psychological care that you can successfully eliminate these symptoms.

[epileric]

The VNS isn't that new. One of the other members here, Birdbomb, has a forum dedicated just to the VNS. Despite how fantastic CWE is,You might get a lot more experiences checking her site out.

http://www.vnsmessageboard.com/

[Cint]

Texas Mommy,

I've had the VNS since 1998, but had it done as a last resort, after trying many meds and an unsuccessful brain surgery. For me, the VNS has worked for the most part, although I still have an occasional complex partial seizure, but the magnet is able to shorten them somewhat. The VNS therapy is not a cure all, it just helps shorten the seizures. For some of us, nothing completely stops the seizures and IMO, it should be a last resort.

Here is another site that explains the VNS:

http://www.thedoctorstv.com/main/procedure_list/1759

[tkopi]

Hi TexasMommy.

I've had my VNS since 1997 and it also was done as a last resort. I have been on many med's and am unable to have surgery. My VNS has helped with my seizure but hasn't stopped them compleatly. I usually have a short aura right befor my seizures and can sometimes chase them away but not always, but it has made my seizures and recovery time alot shorter.

[Birdbomb]

VNS will not work for pseudoseizures it is designed for seizures in adults and adolescents over 12 years of age with partial onset seizures that are refractory to antiepileptic medications.

About 1/3 of those implanted will have success. But it can also make your seizures worse and the side effects can be more of a problem than the seizures.

If you want to read first hand experiences, visit my site www.vnsmessageboard.com (or click on the banner) It is an independent site with no financial ties or connections to Cyberonics. Most of the sites with available information also have financial ties. So what you read is very sugar coated.

[Cint]

VNS will not work for pseudoseizures it is designed for seizures in adults and adolescents over 12 years of age with partial onset seizures that are refractory to antiepileptic medications.

About 1/3 of those implanted will have success. But it can also make your seizures worse and the side effects can be more of a problem than the seizures.

If you want to read first hand experiences, visit my site www.vnsmessageboard.com (or click on the banner) It is an independent site with no financial ties or connections to Cyberonics. Most of the site with available information also have financial ties. So what you read is very sugar coated.

And most of the medications do not work for pseudoseizures. And in some instances, brain surgery can make the seizures worse, as it did in my case. The VNS did improve my seizure control. They start as complex partial and sometimes go into a tonic clonic seizure, so at least the VNS can stop the bad ones from happening to me. The side effects for me are a hoarse voice when the VNS charges, shortness of breath at times, sometimes I do wheeze, and a scar on my neck. The side effects of some of the medications are worse than the seizures, so there are pros and cons to ALL treatments! This is a first hand experience and I have no financial ties to Cyberonics, just telling my truth.

[Birdbomb]

Cint's success is wonderful and some are truly astounding.

VNS is adjunct therapy, created to work with medication. Now a few lucky folks have been fortunate to be able to reduce their medication due to the success of their VNS.

VNS IS NOT A CURE. There is no guarantee it will work and if it does work no guarantee on how long it will last.

The best advice is to RESEARCH, RESEARCH, RESEARCH!
Download the Physician and Patient Manuals, READ them. Talk to both those with success and failure. I'd like to say consult your doctor but it's very difficult to find a physician who is thinking about the patients health and not his wallet! Once it's implanted, no other doctor wants to deal with it, NO MRI's and if problems begin, no one will take you seriously.

[Bernard]

TexasMommy, there are numerous threads in this forum about the VNS:

http://www.coping-with-epilepsy.com/.../tags/vns.html

Works great for some, wreaks havoc for others. No way to tell what your result will be until you try it. Can have associated issues with long term follow up care. I'd suggest reading as much as you can (both good and bad) to fully understand what the commitment entails. We looked at it briefly years ago for Stacy but chose to explore other options.

[valeriedl]

I have a VNS. I got it about 3 years ago.

It has helped alot. I still have to take meds though.

Since I've gotten the VNS I am having less sezs and they aren't as bad as they were before I got it.