This is the thread!

If you have already posted your story, please copy and paste it to this thread,
but keep in mind this thread is open to all viewers. If you would prefer to keep your story in the private forum, just post a link back to your thread. An make a note to keep your story off the open forum.

Thank you so much for your cooperation in this.

Sincerely,

BB

Vagus Nerve Stimulator implanted: 4/20/2006

Turned on: 5/04/2006

ER visit: infection at incision site on my neck: 05/27/2006

I told the Nurse Practitioner that something felt wrong with the lead in my neck.
It felt like something had moved, It just didn’t fell right. The first time I told her was in October 2006, I believe.

ER visit: Nerve Stimulator malfunction: 11/10/06
No one there knew what to do, taped my magnet on and
Went home. Had X-ray, that was sent to Cyberonics

I had it turned off for at least a month. I was so afraid of turning it back on.

Once I had it turned back on I started having migraines almost everyday. I put up with it for several more months, then I asked for it to be turned off, and I asked about getting it removed. I believe it was turned off in May/June or July of 2007.

After it was turned off I starting getting severe cramps in my neck..
I had an appointment with Dr. Couture at Wake Forest University Baptist Medical Center on 3/13/08 to discuss removal of my Vagus Nerve Stimulator.

He said the surgery was too dangerous, there could be scar tissue entangled around the carotid artery and or jugular vein. Surgery could result in a stroke or even death.

He also said surgeons do not like to remove items implanted by other surgeons, because he doesn’t know how it was put in.

He suggested I do some stretching exercises. He said a muscle relaxer might help, but would not be good for my bi-polar.

He said if it were him, he would leave it in until I couldn’t bare the pain any longer.

He also said he thought there may be something else going on, the leads may not be causing the spasms.

I told him that if I were not able to stretch my neck and get the Cramping to stop, I would have to go to the ER. I am afraid of that happing more so now after what he has said about the surgery. I had to go to the ER after an adjustment caused severe electrical shocks. The doctor in the ER didn’t have a clue what to do, and had never heard of the VNS. They told me to go to the doctor that implanted it. (that doctor is in Missouri!)
The cramps/spasms are becoming more frequent.

What happens if I do have to go to the ER, are they going to have a Doctor (Neurosurgeon) there to do emergency surgery!!!!!!!!????????

My Asthma is worse. I have to use inhaler every night. As soon as I lay down, I start to wheeze and cough. I wake up coughing and have to use the inhaler again. (I don’t need the inhaler during the day?) My abdomen has sharp pains when I turn over during the night. (the abdomen pain comes and goes)(happened during the day only a couple of times)

I am having terrible sneezing attacks that last 12-15 hours per day. But, if I sit completely still, I will not sneeze???? These attacks are about every other week, or more. They completely wear me out!

I have not felt well for a couple of months, fatigue, nausea and lots of bouts of diarrhea.
I have pain (comes and goes) in both my breast, like electrical shocks from the top all the way to my nipples. They are sore to touch, comes and goes

MAYBE: the Vagus Nerve Stimulator has aggravated my vagus nerve (and who knows what else) and it causing some of the problems I listed above????

I called the surgeon in Missouri (I live in NC now) and the nurse told me the doctor said the leads should not be removed. She said the doctor said surgery would cause more scare tissue.

I was never told that the complete device couldn’t be removed.

Keith,

I sent the following email to another member here.

I am sending you a copy, because I remembered a couple of points, not in My Story.
The recalls on the programming wands as well as the leads.

(I know some is a repeat, but I thought some of the info might be useful)


I have the Lead No. 302 generator No. 102. I called my doctor and Cyberonics about the Recall, and they both told me it WASN'T A RECALL, just a Safety Warning to the doctors to implant the lead correctly. The doctor that implanted mine, said he signed a paper that stated he implanted mine correctly.Cyberonics said it was a mistake being listed as a Recall, when it was just a Safety Alert to the doctors. I don't believe either one of them!!!

I am Bipolar type 1 also. And I do not think it was approved for bipolar!!!!! It was approved for TRD, treatment resistant depression and you had no success with 4 or more medications. I guess I fit that also, since I have had over 20+ medicines????

Once I see the throat doctor, I will have a better idea of what my next step will be. I am going to ask his help, and getting the generator removed, even if I can't get the leads and coil removed.

I do believe there is vagus nerve damage. I know my own throat>body, and I know something is wrong. I wish they would have listened to me, way back when I said something about it the first time. I was adjusted, and before I got home, I was being shocked uncontrollably!! When I went back, I was told by the NP, that the settings had changed SOME HOW????? I had to go to the ER, and they had NO CLUE!! (I taped on the magnet) X-rays were taken and my NP sent them to Cyberonics. She told me, Cyberonics said it looked fine. And they didn't know why the programming had changed by it self.

I noticed on the FDA site, that the programming wands they use, have a lot of recalls also. I would not be surprise if the one my NP used was BAD!!!! She probably didn't EVEN KNOW!!!!!!!!!!!![B][/B]

I would like to share my experience with the VNS, which I had implanted on April 23, 2007 for TRD. At that time I thought the implant was my "last hope" for treatment, since the 15 or so medications I had tried over the last fifteen years had not worked. Also at that time I was in one of the deepest depressive states I had ever been in-and actively suicidal. I do not believe I was in a state of mind conducive to making rational decions. Normally I would have used my background and education in science to investigate both Cyberonics and the infamous VNS implant.

Since June of 2007, as the strength of stimulation was increased, I have had side effects severe enough to require hospitalization twice. It started with nausea, anorexia, abdominal pain, and weight loss of 30 lbs. over a two month period. Then came the airway obstruction, shortness of breath, and tightening in my throat. I was a real trooper, though, and was told that these side effects would dissipate "Over time." I was going to stick it out because I thought that anything was better than being suicidal-even if it meant I couldn't breathe.

Once the severe left ear pain occurred, my doctor insisted on turning down the strength of stimulation. She said that it was not normal to have such pain. I cried because I felt that my "last chance" was disappearing before my eyes.
That was five months ago.

Now I have developed insomnia as well-sleep studies have shown that I never reach stage 3 REM- the deepest part of sleep. My breathing issues have also become intolerable. My pulse ox is continually at or below 93%. According to my research, these are all "possible" side effects of VNS therapy.

Until now, I have lied to my doctor about my breathing problems. I told her that using the magnet to discontinue stimulation had no effect and that I still couldn't breathe. I can't lie anymore. My most recent CAT scan of my chest shows that I have a pocket of fluid in my upper left pericardium- another "possible" side effect of the implant.

I plan to have the VNS turned off next week. To date, the cost of the hospitalizations and myriad of tests I have had over the last year has been at least a hundred thousand dollars. Not to mention the pure agony I've been through. Was it worth it? No, of course not. I'm just another casualty of a society where companies like Cyberonics are allowed to misrepresent benefits vs. risks to fill their pockets. A country where the government, especially the FDA, looks the other way-even as more and more VNS patients come forward with their own reports of adverse effects and, sometimes, even death.

I was diagnosed with epilepsy at the age of 34 (16 years ago). My seizures have never been controlled with medications. Due to multiple focal points I did not qualify for brain surgery. My neuro suggested the VNS and I decided to give it a shot. I had the surgery on 7/21/00. The device never helped my condition but I did not regret my decision to try it, that is until 7/02/06 when the device malfunctioned and nearly killed me. On that date I started to experience what I thought was a new type of seizure. The episodes began with a sudden sharp pain in the throat followed by choking and then unconsciousness. I was not alarmed by this because I have several different types of seizures. My parents happened to stop by that Sunday morning for a visit. They realized that something was terribly wrong and called my neuro and ems. My last memory of that morning was being inside of an ambulance. When I regained consciousness I was in the ICU. What was actually happening is the device was stopping my heart (asystole) during the 30 second on cycles. Once my neuro realized that the problem was cardiac in nature and not seizure activity he had to rush to his office to retrieve the equipment to deactivate the VNS. Once the device was turned off I regained a normal heart beat. My VNS was programmed at 30 sec/3 min and I experienced approx 40 episodes of asystole. I am a very lucky man to have survived that ordeal.

My vns actually started to malfunction in March of 06 though I was unaware of it at the time. I started to experience what I thought were drop seizures. I would just be going about my business and the next thing I knew I was lying on the floor. There were no auras or post ictal confusion associated with these drop attacks. These were new for me but I wasn't alarmed by it because I have many different types of seizures. I had approx 5 of those prior to 7/02/06.

In April of that year I started to have problems with sudden throat pain followed by prolonged choking. My GP wrote it off as acid reflux and referred me to an ENT. The specialist agreed with the diagnosis. I knew that my problem was more serious than that, but the doctors seemed sure of their diagnosis and I wasn't gonna argue with them. I had 2 bouts of throat pain and choking prior to 7/02/06.

That brings us to 7/02/06. I was awoken at 2am by the throat pain and lost consciousness just as soon as the choking began. When I came to I thought that the throat pain and choking were just some type of strange aura preceding a seizure. Those episode continued sporadically through out the early morning hours. By the time that my parents arrived they were occuring every 3 minutes.

All of my ills were cured once the vns was turned off. No more drop attacks, no more throat pain and choking. No more ASYSTOLE !!!!!!!!

kyle was a 14 yr. old teenager with epilepsy he would have many grand maul seizures anywhere from 2-3 weekly.. we had tried so may meds. with all of them resulting in failure over a period of time. we had decided to do the VNS after hearing how wonderful it was and how we owed it to him to try, seeing as it works GREAT in patients with MJE (juvenile myocolic epilepsy) and that he was a great candidate.. they would tell us how children just like kyle after having it implanted would be near SEZIURE free and the only few side affects they had to deal with was a little tickle in the throat and maybe some coughing, a voice change ONLY when it's going off,but those go away over a period of time... we did alot of research on the vns and of course the "nurse" and dr gave us all of the pretty purple pens,paper,and info. even videos to watch on how the vns has IMPROVED these peoples lives .... ..we were so EXCITED for kyle and he could not wait to have this Life changing device that would let him have a new lease on life..so after careful considerations and lots of reading we as parents and as a family decided to have kyle's dr.ordered the surgery we couldn't wait for this for him...everything moved so FAST we met with them in march by june kyle had the vns implanted!!

The day of surgery we were so excited for him. kyle went in had the implant and woke up talking a little funny, nothing big. we knew that was going to happen and it would go away over a period of time? while he was in recovery the "nurse" met with us and handed us the users manual..going over it with us, all along my family and i are thinking "oh wow why are we getting this NOW"??? that night he had a seizure.. still nothing big he has epilepsy so we expected that he just went thru surgery.. ??
well as time went on and kyle was adjusted ,adjusted and adjusted almost weekly.. like we were told to do so the vns would work GREAT for him and he would find his 'sweet spot" it worked VERY well and we were so happy.. only for about month or so. and then the vns slowly showed it's UGLY NASTY, VICIOUS SIDE . over a period of time.


by mid november kyle was having a HUGE increase in seizures!!! he could hardly breath he was chocking,gagging,his ear was hurting he had jaw pain he coughed ALL the time.. i even took him to the dentist b/c he complained of his jaw hurting so bad.. of course the dentist said all was good..HUMM. he had a hard time eating and drinking it was getting pretty bad... we were asking the dr all along what should we do??? she sent us to the "nurse" ( i say "nurse' b/c i know he was a cyberonices rep. ) to adjust and the DR.increased his meds. 3 times the amount kyle is on adavin and zongran, she put him on 12 mgs of adavin (that is insane) he was so stoned and could hardly function.. :(
well by the end of november kyle was having GRAND maul seizures almost daily!! he was having them at any time of the day,
he developed a pattern at night it was always at 4 am. and that set the day, after that it was 6:50 am,then again at 11 am ,noon,3 -6 and so on..we were told by the "nurse" (cyberonices troll) "oh mrs holmes kyle would be having these with or without the vns.. he has epilepsy,and it very complicate.. we have to adjust,adjust and adjust again!! we'll figure it out!!! (really i didn't know that ) so we did EVERYTHING the "nurse" said to do UNTILL
the first of december kyle was a MESS he was living on the sofa,recovering from a seizure or having one! it was all day and night!! before the vns he had a life. he had seizures,but still was able to function and have somewhat of a teenager's life
this was so sad to see him like this !! he was gagging,turning a grayish green color and not being able to breath! he could not eat right b/c he would cough so bad it would prevent him from being able to swallow!! his voice sounded BAD all the time!!! he would have to stop in a sentence till it was eaiser for him to talk.... and the worst of all of the side affects were ,THE seziures were so much different then the ones he had before the vns they were VILOENT! the ones in his sleep scared me to death i would hear him and run to his room sometimes sleeping in his room he would bury his face in the pillow and almost smother! thank god we ALAWAYS heard him.. god knows... ??
by 12-04 i DEMANDED the VNS to be shut off! i called over 30 times that day NEVER HEARD A WORD from them i was crying and begging them on the voice mail to shut it off!!! NO ONE ever called back! they left us out there on our own with my son having non stop seziures ,gagging and turning gray/green

on 12- 04 kyle's aunt and i took poor kyle in the car traveled almost an hour (that's how far we live from the dr) all along he 's having seizures in the car.
we MARCHED in i told them SHUT this thing off NOW!! they told me "you do understand mrs holmes we do not know what will happen he may go into a seizure and not come out!! but that's on you it's your son and your decision"...
i knew as his mother and something was telling me "no it won't turn it off otherwise he's going to get worse or it's going to kill him"..so on 12-04 -07 at around 2pm kyles VNS was SHUT OFF, kyle stopped having seizures,his color came back and he was ok.. at that instant in the hospital looking at my poor helpless son while his head was hanging lifeless in the wheel chair i knew the VNS was DONE and we were getting it taken out... i HATED it at that point i HATED them MORE for all the lies they fed us. preying on our desperation and our poor helpless son. they fed him a life that he will never have and they PLAIN out lied so much it makes me ILL... he was 14 at the time looking forward to a new life and it was all based on lies. In the am of 12-04 he was the sickest he has ever been in his ENTIRE life, and after it was shut off slowly he regained some normalcy.the seizures stopped with the exception of a few,but NOTHING like it was when it was on..
so now we decided to have this thing removed..
the dr and "nurse" DROP us and we are no longer a patient of there's so there goes the surgeon that put it in ,we needed her to take it out..our calls were NEVER returned...we called and called asking them to take it out.. NOTHING !! that was the end of the "nurse" and dr. and surgeon.. GONE!! just like that!!

so we took him back to his old dr. at the Cleveland clinic..there we met with the neurosurgeon and was told kyle should have never been activated at the time of surgery.??? humm more BULLSHIT.. so all was moving along we were having this thing removed!
2 weeks before the removal a CYBERONICS rep calls my house telling me to give it one more chance and the seziures he was having was a NOT to blame on the VNS!!
i told her i'm sorry but that thing ROBBED him of his life and shattered his hopes and dreams and she can go anyways..
that day kyle started having more seziures.. and a few VERY weird symptoms his tounge and throut was BURNING!!!!!!
OMG i was so worried his nerve was being FRIED! and he was going to have permant damage! so here we go again back to the hospital to have test's done he had a CT and EVERYTHING came back normal.. the symptoms started a seziure pattern, again at 4 am..
well it only lasted a few days i took him to his nuro, and he did a test i SWORE that damn thing turned itself back on.. they tested it. it wasn't on ,but the seizures stopped and the "weird symptoms" went away too???

hummm i don't know ,but call me crazy for thinking they have more control over that thing than we will EVER know!!!
everything stopped and kyle's symptoms went away..
on 03-20-08 kyles VNS was removed! ALL of it ,the coils and all!!!!! we are thanking god and all the angels that it's over and and that DAMN thing is out of him!!
i hope and pray no child and parents have to suffer and go thur anything like what some of these patients go thru... living with epilepsy is ENOUGH,but when bad gets worse.. it's a LIVING hell and in my opinion cyberonics are very evil people and will stop at noone and money is there motive..
and something has to stop this before more innocent people and children suffer!
btw kyle has gone almost 6 weeks seizure free.. and is only on 2 mg.s of adavin and his zonagran...we hope and pray everyday he continues to do so well....

I can totally relate to your story. My 19 yr old Lauren has epilepsy and Cyberonics promised the only side effects would be the occasional voice problem, well that was a line of bullshit I've ever heard. She was implanted on 03/27/08, on 05/28/08 she started grabbing her throat and couldn't speak. I got the magnet and taped it onto the unit, the thing wouldn't shut off. Her whole body looked like it was being electrocuted and we couldn't stop it. The emt's and the er doctor all said it was from the unit. Of course her neuro and Cyberonics did a diagnostic test and said it couldn't have been the unit. lauren was rushed to the hospital and put into critical care. I called our Cyberonic rep and she came to the hospital and turned it off. About 1 hour later Lauren was walking around ready to leave. How in the hell does a young girl go from CCU to walking around if it wasn't the unit? the people from Cyberonics are are stupid asses. It's like they are part of a cult of something. Lauren is going to have it removed, but she starts back to college on August 18th. I am looking for an attorney and I'll die before I give up trying to bring these bitches to justice. I'll bet if it were one of their own kids they wouldn't put up with this $hit. How comes it's never the unit? After reading many of these posts it's the same story, Cyberonics doesn't want to talk to us and it's never the fault of the unit. Lauren has gone through so much over the last 8 years and Cyberonics is not going to get away with this, mark my words. Kathie, mom of Lauren