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Author Topic:   Epilepsy and VNS
ruby
Member
posted 12-16-2002 09:13 AM     Click Here to See the Profile for ruby     Edit/Delete Message
My husband and I have been together for many many years. He had epilepsy when we were married and I knew that there may be times he needed extra help. His epilepsy has gotten worse over the years. I know part of it is because he doesn't take all of his medications. They give him horrible side effects and I think that frustrated him more than the actual seizures.

Of course, if he doesn't take the meds, the seizures are worse and more frequent.

Has anyone here heard of VNS? We are looking into that as an option for Frank. It sounds like this may be what he needs. Once it begins working it would cut down on his medications and the seizures.

I would love to hear from anyone who has knowledge for experience with this device. We are in the beginning stages of learning.

IP: 64.240.189.78

GRM4LOVE
Moderator
posted 12-16-2002 09:25 AM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hi Ruby and welcome

I am sorry to hear hubby is having such bad side affects. if this vns procedure is relatively new, I would suggest doing a search on google.com or yahoo.com under epilepsy and vns and you will get top info. I just did a search and came up with this link that might be of value to you.

http://www.med.umich.edu/neuro/epilepsy/vns.htm

also this link should bring up other results that i received from google.

http://www.google.com/search?q=epilepsy+and+vns&hl=en&lr=&ie=UTF-8&oe=UTF-8&sa=n&oq=epilepshy+and+vns

here you will not only find vital information on research etc but message boards and places where others like yourself are reaching out specifically for the support and information you need in this area.

I pray that he will get regulated.. some families who have dealt with eplilepsy that I have spoken to have also gone to alternative complimentary treatments but I am sure you know what way you and your hubby need to go.

please keep us posted.. richest blessings

Gail

IP: 66.108.75.139

ruby
Member
posted 02-04-2003 02:04 PM     Click Here to See the Profile for ruby     Edit/Delete Message
Thank you Gail. Sorry to be so long in getting back to you.

Things are turning around for us. We've done our own research and actually spoken with a representative from Cyberonics (the company that actually makes the VNS implant) and we're on the path to getting it. Right now we're awaiting insurance approval and then I think we're going to go ahead with the implant!

A major selling point for us was the relative lack of side effects. Unlike his AEDs, which can make him dizzy, agressive or even hallucinate, the only major side effect with VNS is a "funny feeling" in the throat every once in a while.

My husband is hopeful this device will help him be more independent and be able to lay off the AEDs. I think this might just be the difference we need!

IP: 64.240.189.78

GRM4LOVE
Moderator
posted 02-04-2003 02:14 PM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hello Ruby

This is wonderful news...please keep us posted as there are many who are silent out there in the community dealing with similar issues..

keeping you both in my prayers.

richest blessings
gail

IP: 66.108.75.139

ruby
Member
posted 02-06-2003 01:32 PM     Click Here to See the Profile for ruby     Edit/Delete Message
Thanks Gail, you're right. It was lurking on boards like these that helped my husband and I find information and background on VNS, and ultimately helped us make our decision.

Well, here's an update: We got insurance approval for VNS! We're very excited. The isurance is covering a good chunk of it so the whole procedure won't be terribly expensive. Phew!

IP: 64.240.189.78

GRM4LOVE
Moderator
posted 02-07-2003 08:18 AM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Oh Ruby,

This is wonderful news!! I pray that things will go smoothly for you and your hubby and that the procedure is successful.. please keep us posted...

take care.
Gail

IP: 66.108.75.139

banking_ben
Member
posted 02-18-2003 11:41 AM     Click Here to See the Profile for banking_ben     Edit/Delete Message
Ruby, that is great news. i have a 13 year old stepson (well almost- we are not maried yet) who is thinking about getting the implant. I have been doing the same thing as you (lurking on mesage boards to find out info) please keep me in touch with your husbands progress. i am really interested. we are getting pretty serious about getting VNS for mike as well. it does seem encouraging. good luck and keep us posted

IP: 64.240.189.84

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