Hey!

[Birdbomb]

Hey everyone.

First I'd like to say good luck to Bernard and Stacy with their new message board. It's fun and challenging. Take it from me you'll have your work cut out for you are the site grows.

I am Birdbomb (aka) Donna. I have the www.vnsmessageboard.org

My seizure disorder began a month after a total knee replacement in 2001. It began with a doozy of a grand mal in my back yard. It's a long story but all the details are posted on my site. I went through a regime of medications and ended up with VNS implant. The devise caused more problems than benifits so it is now turned off and I am contemplating removal at a later date.

I began my site when Cyberonics shut down their message board without warning and left many patients with no place to turn. Many have found their way and many new VNS patients have come. It's hard work and a labor of love. It also helps keep my seizure order in prespective. So many people tend to dwell on their illnesses and lose focus, I guess you can say my site is Thearapy! :wink:

 

[Bernard]

Hi Donna, welcome and thanks for the support. Forums are hard to establish, but I think we are off to a good start. Hopefully our (Stacy's & mine) schedule will settle down soon and Stacy will get more time to participate regularly.

I'm sorry to hear that your seizures began after the knee replacement surgery. Stacy's grandmother had several strokes after her first knee replacement. She never did regain full mobility and the second knee replacement really was more than she could handle (more strokes and health problems ensued leading to her eventual passing).

I'm not sure that I will ever be willing to undergo an elective surgery. Based upon what I've seen, it seems that the risk is too great for creating graver problems than the one it solves.

As you are aware (but others reading this may not), I have visited and participated on your board. There is a lot of surprising information and VNS patient stories there that can't be found anywhere else (AFAIK) on the internet. It's certainly a valuable service you are offering to anyone looking at the VNS Therapy. Thanks for that.

 

[Birdbomb]

Thank you Bernard. Most of the opinions have been favorable about my board. Those with no problems with the VNS seem to have difficulty understanding those who do. Usually by the time people find their way to my board, they are looking for answers that their doctors and/or Cyberonics can't/won't or refuse to answer.

As for the elective surgery, it can to a matter of being in a wheel chair or walking. I had the other knee done in Nov. 04 right after bi-lateral carpel tunnal surgery over the summer. It's been a rough year, but my choices had to be done, because of pain factors and use of hands/legs. I do what I have to do.

 

[Bernard]

Well I certainly hope your new knees work out good for you without further complications!

Like many things in life, one really can't say for sure what one would do until one has to face a situation. I hope I didn't upset you with my last post. My comments were not meant to judge your decisions. I was just musing "out loud".

 

[Birdbomb]

Aw! Heck no! Dude! I'm a tough old bird! Been around the block a few times and it takes an awful lot to ruffle my feathers!

Like I said, you do what you have to do. :wink:

 

[Stacy]

VNS

Donna,

I'm sorry to know you are having problems with VNS, and I'm glad to have the information. I was considering VNS at one time. Things always have a way of working themselves out for the best.

 

[Birdbomb]

Thank you Stacy,

Problems with the VNS are unforseeable. No one can tell if your body can handle it or not. I think a more selective use of the VNS is more in order. Too many people see this as a "cure all" and at times the information given about the VNS is misleading.

At any rate, it is a personal choice. One must make up their own mind as to the VNS or not. My problems opened a doorway to help others with my message board. I have met some really terriffic people who have gone through hell and high water. My list of cyber friends is long and rich.