Epilepsy & Seizures Support Group

I have had a VNS since 2000 when got my 1st one got my 2nd one May 02

It works with my AEDs and before I got it Iwas having an average of 60sz's a month.

It controls my Tonic-clonic sz's and keeps me from going down but not my SP's.

Im regractory my sz's will never be controlled anyway.

Belinda

I went saw my VNS doc yesterday.
He turned up it up to 2.25 MA
it's on every 30 seconds and off for .8 minutes
Im hoping since my sz's have increased the upping of the VNS will help decrease my seizures.
without the VNS I'd be averaging 60 a month.

It works with my meds Zonegran,Topamax,Klonopin andTegretol.

Im just hopin my seizures get better thanone Saturday fell out Shower hit tile floor and Im still sore.

Sarah

Hi
I am new here and just wanted to share I am a member on the www.vnsmessageboard.org and if you are looking for stories and people to share you may want to pop over and check them out. over 600 members all dealing with the VNS

hugs

Jen,
Mom to Danny Jr who we lost to Epilepsy at age 3 on 12-26-01
http://dannyjr.proboards44.com/ind...

My VNS was implanted Sept 02 after 6 months of deliberations and researching anything I could find, which at the time, there was little or no information available except for the Cyberonic's website.

Two months after implantation, I fell breaking my arm, EMT's placed a cervical collar on ripping the generator loose from my chest. In Jan I had to have it reattached.

I was never seizure free. It took away my auras and I suffered numerous side effects, most of which had never even been explained to me. Then right after Christmas 3 years ago, the worst side effect began. Shooting pain and numbness down my left arm every time it ramped up. The rep from Cyberonic argued that it wasn't the unit doing it.

Yet the pain and numbness only happened when the unit was firing. I insisted it be turned off and the pain and numbness stopped after a few weeks.

When Cyberonics closed down their own message board, I created the first VNS message board and brought many of the old members with me. I am the owner of www.vnsmessageboard.com

We are nearing the 700 membership mark and recieve about 300 visitors a day from all over the world. My site is NOT funded nor is is vested in any way to Cyberonics. We are an independant board and allow members to "tell it like it is" We are neither proactivist or antagnists towards the device, we allow everyone the option of vocalizing their opinion of VNS without fear of reprocussions.

Thank you for listening.

Now I am going to explore this site more because I have many other medical issues and this place looks very interesting!

Your numbers are a bit inflated
I would like to make a correction in your statics.
This is a copy and paste from
http://www.vnstherapy.com/epilepsy...



What are the results of the VNS Therapy System clinical trials? .
A study published in Neurology by Dr. G.L. Morris and colleagues reports the results of long-term follow-up of 440 patients treated with VNS Therapy in the controlled trials. According to the data, 23% of patients reported a 50% or greater improvement in seizure control after 3 months of VNS Therapy. The one-year and two-year seizure reductions data were 37% and 43%, respectively. Your physician can give you information about the clinical trials that have been done, including published articles describing the results.

Whoops I got them wrong sorry about that Birdbomb.
I've been on your message board under another name and been kicked off;but couldn't use it said it was already being used.
I know all about the VNS had it more 6 1 /2 yrs.

Sarah

my hubby has had a vns implanted since 11/02. he has had great success with his. it has controlled well more than 50% of this seizures. i would highly recommend to anyone.

Its good to hear of some good news with this.
Are you a member of the www.vnsmessageboard.org
we would love for you to share your story with us hugs

To Birdbomb and others: here are excerpts from the abstracts of ALL the published trials on VNS and why we generally say 50% of pts get about 50% reduction and you guys can look up the full articles if interested.

1) Evaluation of refractory epilepsy treated with vagus nerve stimulation for up to 5 years. Authors Ben-Menachem E; Hellstrom K; Waldton C; Augustinsson LE
SO Neurology 1999 Apr 12;52(6):1265-7.

Results: Nineteen of 47 patients with partial seizures, five of nine patients with idiopathic generalized seizures, and five of eight patients with Lennox-Gastaut syndrome had >50% seizure reduction. Side effects were mild. Conclusion: VNS is a safe and effective treatment for refractory epilepsy.

2) Long-term treatment with vagus nerve stimulation in patients with refractory epilepsy. The Vagus Nerve Stimulation Study Group E01-E05. Authors: Morris GL 3rd; Mueller WM SO Neurology 1999 Nov 10;53(8):1731-5 (this is the study birdbomb referenced in his post)

RESULTS: A total of 454 patients were implanted, and 440 patients yielded assessable data. A > or =50% seizure reduction postimplantation occurred in 36.8% of patients at 1 year, in 43.2% at 2 years, and in 42.7% at 3 years. Median seizure reductions compared with baseline were 35% at 1 year, 44.3% at 2 years, and 44.1% at 3 years. Most common adverse events postimplantation at 1 year were hoarseness (28%) and paraesthesias (12%), at 2 years were hoarseness (19.8%) and headache (4.5%), and at 3 years was shortness of breath (3.2%). Continuation rates were 96.7% at 1 year, 84.7% at 2 years, and 72.1% at 3 years. CONCLUSION: Long-term, open-label vagus nerve stimulation (VNS) provided seizure reduction similar to or greater than acute studies, for median reductions and for those reaching a > or =50% seizure reduction. VNS remained safe and well tolerated, with nearly three-quarters of the patients choosing to continue therapy.


3) Prospective long-term study of vagus nerve stimulation for the treatment of refractory seizures. Authors: DeGiorgio CM; Schachter SC; Handforth A et al. SO Epilepsia 2000 Sep;41(9):1195-200.
This is the largest prospective long-term study of VNS to date. RESULTS: The median reduction at 12 months after completion of the initial double-blind study was 45%. At 12 months, 35% of 195 subjects had a >50% reduction in seizures, and 20% of 195 had a >75% reduction in seizures. CONCLUSIONS: The efficacy of VNS improves during 12 months, and many subjects sustain >75% reductions in seizures.

4) Effectiveness of vagus nerve stimulation in epilepsy patients: a 12-year observation. Authors:Uthman BM; Reichl AM; Dean JC; Eisenschenk S; Gilmore R; Reid S; Roper SN; Wilder BJ
SO Neurology 2004 Sep 28;63(6):1124-6.

This is a RETROSPECTIVE review of the safety, tolerability, and efficacy of vagus nerve stimulation (VNS) in 48 patients with intractable partial epilepsy was performed. Mean seizure frequency decreased by 26% after 1 year, 30% after 5 years, and 52% after 12 years with VNS treatment.

Hope this helps as this is a complete review of the medical literature to date.
Dr O.

Thank you all very much for your input. I am currecntly being considered for alternative treatments to medication and the VNS is one that is being considered. The input you all have given my is something I can consider and also ask the doctor's about at my next appointment.