This link has just been sent to me and I am passing it along. Those with children might make a special effort to pacipitate. It will also allow you the opportunity to ask any questions you may have during the actual program.

LINK


OR-Live.com Presents: Le Bonheur Children's Medical Center to Host Live Webcast on Vagus Nerve Stimulation

See This Treatment for Epilepsy in a Live Webcast: Thursday, October 28 at 4:30pm (CDT), 5:30pm (EDT), 21:30 (UTC)

MEMPHIS, TN -- (MARKET WIRE) -- 10/05/2004 -- In a live webcast on Thursday, October 28 at 4:30pm (CDT), 5:30pm (EDT), surgeons at Le Bonheur Children's Medical Center will perform Vagus Nerve Stimulation (VNS Therapy™). This is a treatment option for children with uncontrollable seizures.

Approximately one percent of children in the United States have some form of epilepsy. For many of these children, medication or surgery are effective treatments. However, some children are not candidates for surgery and do not respond well to medication (pharmacoresistant). For these children, VNS Therapy™ is often a safe and effective way to reduce the frequency and intensity of the seizures.

Approximately 40 percent of the patients on VNS Therapy experienced a 50 percent or greater reduction in the number of seizures after two to three years. Three out of four VNS Therapy patients continue on the therapy after three years.

VNS offers additional benefits to children. Children using the VNS are able to better control their seizures, thus helping them perform better in school and become productive citizens. VNS can also help with depression that is often a side-effect noted in people who have chronic seizures.

The procedure will be performed by Dr. Frederick A. Boop, Chief of Pediatric Neurosurgery at Le Bonheur Children's Medical Center. Dr. Stephanie Einhaus will host the program and answer your e-mail questions.

VNS Therapy sends precisely timed and measured mild electrical impulses to the left vagus nerve, which then activates various areas of the brain. Vagus nerve stimulation is delivered via a small pacemaker-like device that is implanted just under the skin during a short outpatient procedure. Roughly the size of a small pocket-watch, the device is implanted in the patient's chest with small wires running under the skin to the left vagus nerve in the neck. Using an external programming system, physicians can adjust the timing and amount of the stimulation the patient receives. A special magnet allows the patient or caregiver an added measure of control over the disorder.

Visit www.OR-Live.com now to view a program preview and doctor comments. A VNR is available at http://www.or-live.com/met/1240/rams/vnr.ram

Thank you! :Thanx: Take care, Fay

My daughter, Briana, was ready to run around the hospital, ready to play, about 2 and a half hours after surgery. The surgery went well and it was obvious it didnt really hurt her.
The vns hasnt hurt her since. I havnt heard any complaints related to it yet from her.In fact, as little conversation she has, she has told me the tickle in her throat helps her seizures.
Briana has never had a grand mal, and i pray she never does.
I truly believe watching her in a seizure is 10times more hurtful to me than it is to her.
Once shes out of it, shes fine, like nothing ever happened.
Its just watching my child lose so much life when she's in and out of her right mind. It is so sad to me.
Not only did the vns give her a chance at a better life,
but it also gave ME a chance at a better life.
Do you hear what im saying?
I would love to get her seizures under control. Even if she ahs 1 or 2 a day, I would be able to have a life again!
I would be able to work, and go back to school, and all that good stuff!
Until then though, we stick it out together.
sarah

Sarahbri,
After I had my 1st VNS implanted; they wouldn't even let me go home that day
because I was in such pain and I was given morphine every 4 hours and it knocked me out.
I was in pain for 17 months.
When I got my 2nd VNS I went to a pain specialist and instead of going back to him for the procedure again
he told me what I could use to help with the pain.
The VNS isn't great and it doesn't work at low settings for everyone like cyberonics likes people to think.
Belinda

Hi, as far as pain goes, everybody is diffrent.
But, I can tell you this, I have a very high pain tolerance, I have been through some pretty painful things in my life. ( i.e. had brain surgery twice, emergency appendectomy,gave birth to a 10 pound baby...just to name a few) Anyways, VNS surgery is at the top of my list of most painful things that I have done. :wacko:
I believe it's might be more painful for thinner people without a lot of fat tisue. They have to dig a whole in your chest to put the generator in. I'm a thin women that is mostly made up of muscle. ( was a jock as a teenager, and have spent periods of my life living at the gym) In order for them to make a pocket in my chest so that the generator didn't stick out, which it did anyways, they had to dig through muscle. This like Belinda left me in some major pain. My pain went away after a while. But, that pain then turned into nerve pain shortly after. Nerve pain has to be one of the most painful things that I have ever delt with, that has to have #1 on my list of painful things. I had my VNS out 8 months ago, and I continue to have nerve pain, and like Belinda I have been told that I'm going to have to learn to live with it.
E

WOW!!!!!!
Now i'm starting to worry. Briana seemed FINE!!!! When did you start getting nerve pain??????
Sarah

My Nerve pain started when the VNS was on and it was on a rapid cycle. The thing was "ON" more then it was "off". This is what made me finally turn the VNS off, that and it was making me have more seizures.
Anyways, I had the generator removed in Feb of this year, and everything was fine, until this summer. Then out of the middle of no were the nerve pain returned and worse then it was before. :Icky:
Last month I even got my Neuro to admit that my nerve pain is from the VNS. Well the best she could do is say. "well, I willing to admit that your facial nerve pain is most probably, possibly, could be , from the VNS. She just couldn't come out and say it was, but that was good enough for me. I just needed her to acknowledge it, because I feel like I have been fighting an up hill battle battle for two years now.
I am now on GABA blockers, for the pain and they seem to work. But, like I needed anther med.
E

Im on more often now than ever and my pain is worse than it has ever gotten.
It goes off ever .8 minutes for 30 seconds.
The sore throat I just can't handle anymore or tooth pain on a tooth that had a root canal done on it.
So I don't have any nerves on it; 3 years ago.
Belinda

Belinda

I have tooth pain in teeth that were removed! Even now 11 months after the darn thing is turned off.

This ride just gets funner and funner!!! :blink:

Allright guys, we "older farts" have to remember that a child does not consider pain until it disables them from something they want to do. I have watched my kids run around 2 hours after tonsils and adnoids and ear tubes all at once. Kids do have a lower pain tollerance than we do, or at least the ability to ignore it better than we do. As far as Bria that is awsome. As far as the rest of us, well we come from the school of hard knocks and we do have a greater tolerance to pain than the norm in society but we also do become more sensitive to it being there too because we have had to live with it for so long. Modern pain meds are great until you have realised that you have missed out on a week here and a week there. Then they show their bad side. I was a hard head this surgery and only took my pain meds for 2 days after the removal and since have just been eating the heck out of ibuprophin and tylonal. Might be killing the liver but hey, got the brain. I just couldn't go through the pain med addiction from the implantation again. That was ummmmmm that place where the devil is and then some.
Belinda you are in my prayers for sure. Hang in there guys and gals, we were given roller coasters for reasons.
Luvs to yas!
Anita :Yeah That:

Nitaria,
My tooth pain keeps me eating soup.
And I'm going to start loosing weight oh boy;because
I'll end up sick and I don't care to end up sick because I'm not eating again.

I prefer the side effects of the drugs they at least go away with me in 2-4 wks.

I was just on line at one site were it said there wer no bad side effects of VNS.
They got an e-mail from me now lets see if they answer me.

Belinda

Belinda,

I am curious as to what site that was, please post the link. :blink:

Birdbomb,
I'll have to get to you on the site.
I'l have to look for it again.
Belinda

Nitaria,
I go to a dentist this Friday November 5th.
So I will be getting a new tooth soon.
I'm also going to ask the dentist for a script for apin reliver for my tooth.
wish me luck I need it.
Luckily I'll be able take the subway to his office walk the three blocks or so.
Belinda

Good luck to you on the dentist Belinda. I hope that it will help alieviate some of your pain.
:wub: Anita

Anita,
Thanks And I'm sure he will once I get to see him.
I'm most concerned with the replacement of my tooth.
Belinda

Belinda-
Why are you getting a new tooth. Is the tooth that is brothering you on the left side?
Elisa

Petunia,
I'm getting a new tooth because of aseizure I had in September when I hit the pavement.
I lost a tooth at the bus stop.
Belinda