Trying to decide if I want Vagal Nerve Stimulator Surgery!

[kirk267]

Hi how are you all doing?

I just had an appointment with my neurologist and he suggested I get Vagal Nerve Stimulator Surgery (VNS). I've used google to search for websites to do with VNS and have read alot of the information about VNS on how it treats not only seizures but also depression too. And have also read about if it is right for me, because my neurologist sent me to Montreal to see if I was a candidate for brain surgery 2 years ago but unfortunately I wasn't because I have no scar tissue where my seizures start out in the left side of my brain. Also they said that my ability to communicate is in that section of my brain and if they were to go ahead with the brain surgery that it would be like shooting someone in the dark since there is no scar tissue there.

Anyways since I was diagnosed with seizures I think I've been on almost all of the AED's with temporary to no results on controlling my seizures so since it has been 14 years now and things still don't show any decent results my neurologist told me to really consider VNS and from what I've read on numerous VNS websites it seems that it's the best option I have presently.

My doctor also told me to contact him by the end of this week or next to tell him whether or not I want to go ahead with VNS surgery.

So my question is " has anyone had Vagal Nerve Stimulator Surgery and can tell me a little about how it is like and if you think it is really worth it? "

( My personal opinion on this matter is so far yes but it would be great for other people that have had VNS to tell me about there experiences with this epileptic treatment since I've not had it yet!)

 

[BIGMAN131307]

You should send a PM to "Birdbomb". Also visit the VNS message boards.

http://z4.invisionfree.com/VNS_Message_Board/index.php?

If you like to see a VNS surgery being performed check my post here:

http://www.coping-with-epilepsy.com/forums/f22/real-epilepsy-surgical-procedure-videos-graphic-989/

You can see two videos explaining the procedure as it is being done.

 

[alivenwell]

I have not had it done. But, I do know that once it is done, you will not be able to get an MRI (Magnetic Resonance Image). I personally noticed huge warning signs about that when I went for an injury related MRI.
And, there are some things that are no longer removeable once implanted. It's permanent. And, a lot of times, it also has to be accompanied afterwards by medication. Just from your post, I get the feeling that either the test wasn't accurate at finding the scar tissue, your dr didn't look closely enough or doesn't want surgery. Like you, I have a speech issue afterwards. That leads me to believe there has to be identifiable tissue somewhere near the speech center. I'd try other meds, personally. In my case, I have no VNS, I finally found the right meds, and my sz are controlled for YEARS! It takes time.

 

[RobinN]

I think I would want to try everything else out there before I go implanting something like that. I can't remember what else you have tried.
What about neurofeedback? There is a great sponsor of this website that offers some very interesting alternatives.
Sorry... it isn't high on my list

 

[Birdbomb]

Hello Kirk

Allow me to extend an invitation to you. www.vnsmessageboard.com
Come meet those with the VNS and see for yourself the varing degrees of success and failue of this implant.
Me, my site, and my staff, accept NO fundings or compensation from Cyberonics or any subsidiaries so what you read are factual responses and not marketing puffery/advertising/and or magical thinking.

There are a few things you should be aware of.

1. NO guarantee it will work for you. There is no way of telling who it will work for or who will suffer side effects.

2. VNS has a BLACK BOX warning from the FDA. This means it is permanent. If it needs to be removed the generator and lead wires can be removed with ease but the electrodes that wrap around the vagus nerve are never meant to be removed. There is too much danger of damaging the nerve, causing a stroke etc.

3. VNS can increase seizures/depression instead of reducing them. The sheer number of side effects can be daunting. Some people never have more than a little horseness, but some are dramaticly disabled because of the VNS.

4. MRI's have very specific guidelines that must be adheared to. ONLY one certain machine made by GE is used and certain settings are allowed, but even then there is risk.

5. Other doctors will not know how to deal with you medically. Should you have an emergency, most medical facilities are in the dark about VNS. Trying to find another doctor to treat you may proove to be difficult at best.

6. This is adjuntive therapy. It is designed to be used in conjunction WITH medication. A few lucky folks are able to reduce their medication but rarely does anyone become medication free.

7. When problems arise, it can be damn near impossible to get your doctor to LISTEN to you, especially if he is accepting "compensation" from Cyberonics. If you are having a good result with VNS the company will be your very best friend! In fact, they should be wineing and dining you at this very moment. That is their usual modus operandi. They'll call you every week, take you to dinner, invite you to meet other wonderful success stories..... But if you develope problems, they won't know you exsist!

8. You can NEVER use shortwave diathermy, microwave
diathermy or therapeutic ultrasound diathermy as long as any part of the VNS system is in your body. It can also interfer with bone stimulators, pacemakers etc., they all use RF.

9. Success relies on a few variables.
a) surgeons's skill. How many has he implanted? Does he have a lot of experinace with the carotid sheath?
b) proper placement. Too high or too low on the nerve and facial pain, cardiac, voice, gastric, renal and tons of other problems
c) you body's own tolerance. Some people hardly feel any stimulatioin and some just can't get past .75
d) infection/rejecton. The BIGGEST issue is infection. It can get real nasty and happen at ANY time, not just when it's implanted. Bad enough to have to explant the entire system. Some people just cannot tolerate any foreign object.

I had my VNS for 6 years and 2 1/2 months. It was turned on for 2 years and 3 months but I developed an extremely painful and debilitating side effect. Every time it went off, pain and numbness shot down my arm into my hand and fingers rendering my left arm and hand useless. EVERY 5 minutes for 30 seconds. I had the unit interrogated and no anomalies were found, it appeared to be in perfect working condition. I had to INSIST it be turned off.

Since that time, I have become seizure free, medication fee and I just had it explanted this past November. It's sitting on my desk right now! along with one lead. I have RA and need too many MRI's to take any chances of frying my vagus nerve or brain!

Had I known then what I know now, I would NOT have had this thing implanted. I researched but there just wasn't much info on the VNS in 2001 and only about 10,000 people had been implanted world wide.

It's a crap shoot for sure, but read all you can about it. Download the Physicial and Patient Manuals and READ them. Chat with those who have good and bad results.

You will have to make your own decision, just make sure it's an INFORMED one that's not based on MARKETING.

 

[Nancy]

Hi~ I don't have the VNS either but I went to several meetings about it too ... my neuro even gave me HIS films about it !! (This was maybe 6 or 7 years ago)

I don't understand why you've been told: "My doctor also told me to contact him by the end of this week or next to tell him whether or not I want to go ahead with VNS surgery."
What's the hurry?

I am FAR, FAR, from being an expert (or even very smart) but I think that brain scars are NOT required for epi surgery. Lots of things ARE required but scars are not one of them.

It's great that you are doing search and investigation before you decide. I'm wishing you the best. God speed.

 

[xenome]

I have had the VNS in me for about a year. It has helped but I am not seizure free. It has reduced the frequency and duration of my grand mal seizures, and has virtually eliminated my petit mal seizures. Im still depressed and suicidal though. The only side effect Ive noticed is it changes the sound of my voice. For me, I think it has been worth it, because I was having seizures ALOT before I got it implanted.

 

[Bernard]

I'd recommend looking into the "seizure control diets", CBT and EEG neurofeedback before trying the VNS. They are all non-invasive and free of permanent consequences should they not offer effective seizure control. See the chart in my sig for more details.

 

[Nancy]

One BIG thing I forgot to add ....... My past neuro told me (when I was looking at all the VNS stuff 6 or 7 years ago) that if I chose to get the VNS, he would get a great $$ commission.

 

[speber]

Hmmmm.........

One BIG thing I forgot to add ....... My past neuro told me (when I was looking at all the VNS stuff 6 or 7 years ago) that if I chose to get the VNS, he would get a great $$ commission.

onder:

 

[Birdbomb]

is a great motivator...oh is it for someone's health? or change their quality of life, who cares!

Show me the

 

[wendyleigh25]

I am sure the time has passed and you had to call your dr already. So far I have only had it in for two months. It has worked and really decreased my seizures. Only problem it increased my asthma but after getting on an inhaler and singulair I am "asthma free". I am actually not on any "seizure meds." I ma on a LOW dose of klonopin (anxiety/sometimes used for seizures). I dont notice the stimulation so my story was a success "so far." I am very happy I did it. I have not had a seizure since they turned it on. I had one two days after it was turned on but none since. Thats my story...let us know your decision.
wendy

 

[Birdbomb]

Good for you Wendy! I am glad it's working in your favor. I don't often hear the success stories.

 

[Nancy]

Wendy -WOW~ that's FANTASTIC ~ I and absolutely thrilled for you. How wonderful. Please keep posting so we hear the positive things.