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helenpe1
vns therapy side effects
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I joined this site yesterday and I'm interesting in touching base with anyone who has a vns. In particular I would like to find out if anyone has experienced any unusual side effects not mentioned by Cyberonics. I occasionally experience 'tingling' in my neck and shoulder - this is actually quite unpleasant and it has been severe enough to warrant having my vns temporarily turned off. At one point last summer it felt like I was being repeatedly stung by a bee or something like that (I'm not sure exactly how to describe it). Cyberonics claims that no one has ever mentioned anything similar to this. I have been quite happy with my vns - it has helped stop many seizures once they have started, which has meant fewer trips to the ER but if this problem became really severe again I wouldn't be able to keep my vns turned on. Please let me know if you have experienced anything like this - I would like to know - Cyberonics makes it sound like I'm crazy or something. Thanks!!!
Recent Comments on this Discussion
Hello. Sorry to hear that you are experiencing tingling that's uncomfortable with your vns. I agree with the other person, you should see your neurologist. Cyberonics should not be making you sound crazy, cause you are not! The doctor should be able to adjust some of the 5 settings to decrease side effects. If they are not sure what to do, they can call clinical technical or the rep for guidance. It seems like it has been a while since you got your vns that you should be feeling less discomfort over time?
Sometimes there are no other adjustments that can be made. My unit was causing extreme pain and numbness to shoot down my arm into my hand every single time it fired. It had been evaluated and there was no malfunction, no lead impedence, just the way my body reacted. I opted to turn the damn thing off, and off it has stayed.
My neuro and I planned for rebound seizure activity and added lamictil as a precaution. I felt so much better when it was turned off! The arm pain and numbness subsided, however I am left with facial nerve damage, occational swallowing issues, severe obstructive sleep apnea and a few other wonderful souveniers for the effort.
For some people, just turning the unit off for a few months and allowing the body to adjust, then trying again, can make all the difference!
www.vnsmessageboard.com
"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)
I don't even know where to start. I could reply to every person here if I had the time.
I, too, am that 1% (or whatever) that gets tossed in the dumpster for the greater good of the other 99%. My Neuro abandoned me after every effort to 'fix' my VNS problems and will no longer see me or return my calls. IMHO, it's a combination of "Very Sorry, we can't do anything else for you," and "Please just go off and die somewhere so this doesn't get publicity."
I got implanted (and botched) in March of 2006, and I am very sorry that I cannot speak to seizures like most of you because I got the implant for Depression. In nearly 40 years I never had a seizure in my life until AFTER I got the implant. Neuro(s) can't find any other explanation for my sudden introduction into the world of seizures.
I have most of the negative side affects mentioned throughout this thread, and more. I know I'm the oddball that probably isn't representative of the major population of implants, but does that make it OK to just use me as an experiment and then toss me in a ditch like a wounded animal?
In addition to all the above, now I have facial twitches, lost mobility in my head, neck, and mostly in my facial expressions. Over the past 5 months I have slowly lost more and more feeling in my left side, specifically the left side of my neck is numb down into the muscles, yet the skin is incredibly sensitive and I rarely shave due to the pain it causes. The loss of feeling started as a minor numbness in my neck over the lead implant area (scar) and now encompasses my entire left side of the neck, from my chin/jawbone to my collar bone. I occasionally have numbness and loss of feeling in my left arm, a new development. It's great to wonder if you're having a heart attack or if your miracle implant is killing you. My blood pressure (again in 40 years) has never been high or low, but mysteriously skyrocketed after about 9 months with the implant.
Most of my problems are (supposedly) due to a botched implant procedure. If I turn my head too far to the right, the wire/lead practically comes right out of my skin. It has no 'slack' as it's supposed to have for normal motion. Removing/Relocating the implant itself (what I think others here are calling the generator?) would do little for me since most of the (yes sometimes unbearable) pain is near the area where they can't remove the coils. Turning the implant off for any amount of time (although I have not tried for more than a few days at a time for fear of what nightmares lurk ahead for someone who just turns the thing off cold turkey after a year+ of shocks to the brain...) has no effect at all.
I trusted that my Neuro knew what she was doing so I can't tell you all of the changes they made to every possible setting in the generator, I only know that they changed everything they knew how to with no help.
I'm no idiot and I did my homework before I got the implant, trusting both the surgeon and my Neuro to tell me the truth about the risks. Not half of the risks were ever disclosed to me. I wish I had known to go to the FDA at that time. I probably would have never gone through with it.
I know I left out a lot of details here but this long reply is only a glancing summary of my problems with the implant. I will be glad to answer any questions anyone has, but please understand that I am very busy in spite of this mess and every possible moment I have is spent with my kids so I'm not on the computer very often. I posted this because I wanted to say my piece about the implant and warn others of what CAN happen even if it's rare.
God Bless everyone who has had success with the implant. You got lucky.
The Captain
Captain,
You are not alone... by far.
Unfortunately the VNS is either very good or very bad.
When I had mine put in several years ago all I got were glowing recommendations. The only side effects I was warned about were that my voice would change (which it did) and that there was a possibility that it could cause or make worse an atrial fibulation problem.
Since I was suffering from afib, I had to be operated upon to correct that before I could have it installed,
What I was NOT TOLD was that the voice change could end up in PERMANENT paralysis of my lefy vocal chord, which did happen (are you listening, our actress who posted earlier?). I hope this doesn't happen to the operatic person who had the VNS implanted. I was a member of te State Champion High School Chorus for four years and now if I were to try to sing folks would be throwing rotten veggies at me, if I am lucky.
More important than that, Cyveronics did NOT inform me of another potential side effect, development or worsening of Sleep Apnea. They now include it in their patient handbook but they didn't at the time I had my implant done. I found out about this side effect by sneaking into the Physician's section of their web site.
I needed to do this because after the VNS was implanted, I developed Sleep Apnea and my neurologist told me there was no way that the VNS could cause it to happen because that us what they told him.
When I produced a copy of the information from the Cyberonics site he was shocked. I then had a meeting with my neurologist and a representative from Cyberonics where I made the rep admit that this was a fact.
So now I have a device in my chest that has worsened my life instead of improving it. Besides the Sleep Apnea, I have at least 8 or more other side effects running from hiccups to jaw and ear pain.
But it is the Sleep Apnea that is the worse. My quality of life is almost zero because of the Apnea. When the Cyberobics appologist one this thread says there have been no deaths from the VNS he is not telling the truth. Nine suicides from 1997 to 2004 and yet none of them are from patients depressed so much that their lives are virtually ended by having both Epilepsy and Sleep Apnea? You have to a fool to believe that. Plus 33 deaths from resperatory problems in the same period when Cyveronics itself admits that one of the side effects of the device is reperatory distress.
FDA's MAUDE reporting system has at least 10 deaths I have seen so far in reviewing less than 100 reports that are believed to have been caused by the VNS being implanted and one that was definately ruled as being caused by the VNS triggering arythmia. I noticed it because the VNS was hooked to the patient's right Vagus Nerve as opposed to the normal left hookup.
All complaints to the FDA are responded to with the citation that the device is labeled to indicate that vocal chord paralysis is a possible side effect as is the possible development of Obsessive Sleep Apnea.
The problem with that is the patient never gets to see these warnings unless shown them by the doctor. In my case he mentioned hoarseness but not paralysis and never mentioned OSA at all.
So is that the fault of the neurologist, who isn't eben in the operating room to see the device packaged or not? Or is it the faukt of the neurosurgeon who operates upon you while you are knocked out? In my esyimayion it is neither of thme. I believe it is the responsibility of the manufacturer and their new patient handbook proves that they know this just as well as I do.
Well, I have perhaps a year or one and a half before the batteries give up. AAt that point I will have to decide and odds are I will opt for removal of the VNS and hope that in 2-5 months my brain will heal enough to get rid of the OSA.
At that time I will have to hope a new theray is developed.
i actualy developed sleep apnea when my seizures changed from controled to uncontroled 5 yrs ago.. there were ilregularities noticed in sleep during a eeg i drifted off to sleep in. so my neuro asked me to go thru a sleep study. i do in deed have sleep apnea which was never detected in the past eegs that i feel asleep during over the years. so when i got my vns in beginning of feb 08, it didnt make any difference. i still use my cpap as i have for the last 2 1/2 yrs. i breath just fine. my neuro told me back then that it was common with epilepsy to have sleep apnea. if you have developed sleep apnea from the vns, instead of having it effect your quality of life to almost zero as you put it, have a sleep study done, get a cpap machine to sleep with and get a great nights sleep every night. cpaps work great, they are portable, i take it on vacation, weekend trips, no big deal. it will really help you. good luck.
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
i actualy developed sleep apnea when my seizures changed from controled to uncontroled 5 yrs ago.. there were ilregularities noticed in sleep during a eeg i drifted off to sleep in. so my neuro asked me to go thru a sleep study. i do in deed have sleep apnea which was never detected in the past eegs that i feel asleep during over the years. so when i got my vns in beginning of feb 08, it didnt make any difference. i still use my cpap as i have for the last 2 1/2 yrs. i breath just fine. my neuro told me back then that it was common with epilepsy to have sleep apnea. if you have developed sleep apnea from the vns, instead of having it effect your quality of life to almost zero as you put it, have a sleep study done, get a cpap machine to sleep with and get a great nights sleep every night. cpaps work great, they are portable, i take it on vacation, weekend trips, no big deal. it will really help you. good luck.
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
I think you should seriously see a doctor at at top neurosurgery medical center to see what can be done to help you, even if this only means better pain management.
Here is a link where you can find a medical facility where you live...
http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqneur&
Of the ones on the list I have experience with...
I personally can't reccomend Cleveland Clinic enough, so get up there if you can. I've also been to Methodist hospital, and their messed up billing system drives me crazy and I have no desire to go there again, but it might be worth it if it's close to where you live.
I had my VNS implanted in November of '05, and it really hasn't done anything for me. If anything, like someone mentioned earlier, its a security device. The voice change has grown very bothersome. Right now mine turns on every three minutes, and I think its on the highest setting. And it seems like every damn time my phone rings at work, or I have to make a call, I don't have my full voice. I've also noticed that if it turns on while I'm working out (running, aerobics class, etc), I can't breathe--almost like I have asthma, I have to stop until its done.
/end rant/
I'm new to this site, but it's comforting to know about others who have had the VNS implanted. Mine was done in October 2005, and I'm now on rapid cycle - which really bugs me as I have to use the phone a lot, so it always interferes with my conversations. I then have to explain I don't have a cold or sore throat, but ..........
The VNS has had little effect on my epilepsy after 18 months, and I'm beginning to wonder whether the operation was worthwhile. The actual operation caused my seizures to worsen generally - the shock to the body, I'm told. Since then, it's been very hard going, and my wife tells me she was against the implantation all along.
Andrew
I also have a VNS and yes, when I'm running or doing a different aerobic workout, I have to relax for about 30 seconds while it activates. It's a pain. I was a teacher for one year(7th and 8th math) and my students hardly could understand anything about a VNS and at that age, they don't want to take the time to even try to understand a VNS. I was depressed and just recently gave up teaching. I now am trying to discover a new career with an education(math) degree. But yes, the VNS has side effects that we must learn to live with. It took about 8 months until my VNS actually did start taking action, and my seizures ended for 5 months. I had one day of partial seizures after that, and nothing since then(2 weeks ago). We'll see where it goes from here. Take care, and I wish you the best.
When side effects are bothersome from the VNS stimulation, the magnet can be taped over the generator to temporarily turn off the device. Sometimes people do this when exercising or when they are talking in front of crowds and don't want the voice to change at that time. As soon as the magnet is removed, the VNS goes back into it's preprogrammed cycle of stimulation. Here's a link to info about VNS.
If the tape doesn't hold the magnet in place, try wearing a jogbra and put the magnet between the bra and the skin. It does a great job holding the magnet in place!
Best wishes,
Epi_help
I need some help in deciding whether or not to have this done for my child..she is 19, mild to severe mental retardation, with seizure..she has mild seizure most of the day. Some you can see or the doctors can track..it is the ones that last 4 minutes that the doctors are concerned about. She is currently on 3 meds for the seizures the doctor can't raise them anymore and she is still having them. The doctor gave me information this VNS Therapy...considering it if it will help her...I guess my question is....the magnetic bracelet that is used to control either stopping or making the seizures less severe...will it be affected by some common products like a microwave, cell phones anything with a magnetic in it...I have read some of the side affect reponses on this page and I have concerns about some of them.
Sorry, forgot to add the link!
vns info
Epi_help
It is VERY difficult to reply to this constructively. I even slept on it before deciding to speak.
The comments made by epi_help may be technically accurate, but do NOT speak to the topic of this post. The link given is an ADVERTISEMENT by the manufacturer of the device, NOT a comprehensive unbiased study of the Pros and Cons of getting the implant.
Please, if you are considering this procedure, do your homework EVERYWHERE and listen to EVERYTHING you read, positive and negative. Don't just listen to MY negative babbling OR epi_help's starry-eyed advertisement. Neither is probably a good indication of what YOU should expect. This is a permanent, irreversible procedure that will at the very least leave you with a wire wrapped around your Vagus Nerve. FOREVER. Do not enter this lightly.
I have to speak to something in the above link... I quote:
"The patient is usually not aware that it's operating."
I think this is absolutely a best case scenario and I doubt many will say that they have no idea there is an implant in their chest that is shocking their brain. I know every millisecond mine is operating.
I think it is not only misleading but downright negligent to post a link to the 'Best Case Posible' without also adding FDA reports and other information that show the 'Worst Case Possible'. Especially when the original question was about negative side affects!!!
If you make your decision based solely on epi_help's reply above, God Help You.
The Captain
Hi!
I had a VNS unit implanted in me August, 2004 When I was 54. During that time I have not incurred any side effects until approximately three months ago. I have taped the magnet onto my chest to shut the unit off on Friday, March 9th. and as soon I can visit my neurologist I will have her shut it off.
I am suffering from severe headaches,a heart pulse rate of 96 (when before the vns was implanted it was 80), great fatigue,sleep apnea, nightmares, nausea, extreme jaw pain, bad toothaches, severe choking and shortness of breath, bad cough, depression, bad tingling in my neck and overall I did not feel well. My wife saw a change in my greatly lessened tolerability and even asked my step-father if I was like that before and his answer was no. The vns unit has made the last three months a living hell.
Also I did not know that I cannot have a MRI test when the vns unit is shut-off,but I guess it is one of the vns units so-called benefits. To have a MRI test I need to have the vns surgically removed.
Initially I thought it was only me and I did not want to complain about these problems, but after I have read various comments posted by many people on various websites I realized that other individuals experienced many of the same problems.
I felt so relieved and not on edge when I put the magnetic over the VNS unit on Friday evening it was amazing.
Last evening I removed the magnet to take a shower I began coughing and choking radically which caused me to throw-up. It also felt as though a sharp knife was stabbed in my throat.
I believe Cyberonics should have tested the vns unit more before making it available and if a persons individual body is going to benefit from the implant of this unit.
I further believe the F D A should have required more testing of the vns unit because these are human brains.
Furthermore Cyberonics has not called me since the unit was implanted, but before that when they had a product to sell I was contacted many times
If anyone else has experienced these problems with a vns unit please contact me. My email is- sprucemont@charter.net
Also I have been in contact with a friend of mine who had a vns unit implanted in early 2004 and she also is suffering from the same symptoms.
Thank You, Albert Richenberger
UPDATE:I went to the my neurolgists office yesterday March 12 2007 to have the vns unit shut off and nearly choked to death in the nurses presence as she was trying to turn the unit off!
Later that same day in the afternoon this vns unit start choking me again as the vns unit started on its own accord.
I immediately was taken to the neuroligists office and she taped the magnet to my chest and said do not remove it as I think the wires are disconnected and sent me to Radiology to have my chest and neck X-rayed I now have a very radical cough. She said she did not trust the unit to not start on its own again. That is the reason for taping the magnet to my chest.
All of this is doctor witnessed. I would not reccomend that anyone has this unit implanted as it was a couple years before the side effects appeared.
I now feel that I am a prisoner of this unit.
read more on the internet last evening and learned that AED can not be administered to anyone who has this unit in them. Another vns surprise!
Albert Richenberger
further update:I was called this A.M. by my neurolagists office to tell me that the wires were intact, but the unit was malfunctioning and it had to be surgically removed as soon as possible.I have since then called cyberonics and am waiting for a response.
Albert Richenberger
Youre not the only one with something totally funky going on like that!!!!
I had the VNS originally implanted in June 2000. I had the generator replaced in September 2006.
I had no problems whatsoever with the old generator. Then, about 5 weeks after the surgery for the replacement generator, early one evening I started feeling the pulse. Now, usually, my VNS is put on a setting so I don't even feel a tickle for more than an hour after the setting is changed, so this is very strange. The feeling on my neck became progressively worse throughout the evening until it became a sharp pain where it seemed like the lead wires were placed. Let me tell you, I had never felt anything like that before in my life.
Like you, my neurologist told me to tape the magnet to the generator to turn it off (!!!!). That being done, I was brought in for some x-rays which showed positively nothing - the wires had not become loosened or misplaced, and neither had the generator. So, he turned it off. It was left off for about 3 months.
Well, I was left in a pickle, because since the VNS was implanted the frequency of my refractory seizures had greatly decreased. So, I could either have it taken out, which was undesirable, because it was part of my therapy, or leave it in, which was also undesirable, because who knows if this will happen again?
I left it in. It's turned back up to its normal settings, and I havent had the problems since. But I really hate Cyberonics - I have read their stupid manual front to back and all their warnings so many times and they mention NOTHING like this. Nothing!
Well I was called back by Cyberonics the afternoon of March 13,2007 and told because "because you had your vns unit implanted in August 2004 Cyberonics is not responsible whatsoever if you unit malfunctions as the vns unit has only a 2 year warranty". This is hard to believe for me.
Albert Richenberger
Albert, This needs to reported to the FDA. Both you and your doctor can do this.
https://www.accessdata.fda.gov/scripts/medwatch/
Cyberonics will wine and dine you to get you in the door but kick you to the cub as soon as you have a problem. The unit has a one year Limited Replacement Warranty
"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)
Work like you don't need money, Love like you've never been hurt,
And dance like no one's watching.
Albert Richenberger
Hi I tried to accomplish what you suggested but I don't have any luck typing in www.acessdata.fda.gov/scripts/medwatch
This company makes me feel like I have been abandoned by them.
Thanks, Albert Richenberger
"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)
Work like you don't need money, Love like you've never been hurt,
And dance like no one's watching.
Hi,
I have had the vns implant since 1998. I haven't had any problems with it, but I do believe you when you say you did. I know of one person at the same time who had his shut off. I think it reacts differently with everyone. They should take into consideration what you or anyone tells them. Who would know better than the person who has the implant?!
I had the vns implanted in 2005. Using the magnet has
givin me control over seizures. I've noticed when I've held it
to close to long the vns it gives me a feelin as though i've been
stung by a bee.
To the readership,
I am late to responding to this thread as I just happened upon it. While I cannot share experiences and/or knowledge from the standpoint of Epilepsy I am experienced, knowledgeable and continuing in my research as it relates to the VNS Therapy as it is utilized for TRD (Treatment Resistant Depression).
I am not a patient but I am a very long-time support person and health care advocate and activist and I share our experiences with the VNS Therapy in an informed proactive website and message forum I use as a repository for my research, thoughts and opinions and the sharing both of the pro’s and con’s of this treatment option.
The site name is: VNSdepression.com
The link to the site is: http://www.vnsdepression.com
As I read through a number of these personal experiences I find the individuals discussing the amplitude and increasing the amplitude settings and yet no one is discussing the other parameter settings such as the pulse width and/or the frequency.
From our experiences many of the side-effects such as jaw and neck pains etc experienced by my spouse were overcome by adjusting and lowering the pulse width and/or frequency settings, for instance, while attempting to increase amplitude.
As part of my advocacy I encourage education of the patient and/or his/her support persons to make informed and un-coerced medical decisions in collaboration with a compassionate, trusted, knowledgeable and licensed health care practitioner.
While I do read here of individuals lambasting Cyberonics my position is that the relationship is between the patient and his/her physician and any additional assistance from the manufacturer is a plus. I’m curious if any of these participants when encountering side-effects from their medications contacted the pharmaceutical company and lambasted them for their product? As a knowledgeable and informed support person and having seen my wife through numerous treatment options I am well aware of the many side-effects and complications but the fact remains that the nature of her illness is life threatening and our attitude is “Nothing ventured, nothing gained†as we enter into the “Trial and Error Approach to Wellness.â€
My wife has experienced many serious side-effects from several AED which are crossover medications being used for TRD (Treatment Resistant Depression) and unlike some we do not alarm and bash any therapies knowing full well while our negative experiences are also to be shared others are obtaining efficacy and benefits from the very same therapies.
I think it is also incumbent to separate in this instance the surgical procedure and potential side-effects from the therapy itself to be able to better understand and to make an intelligent and objective assessment. While there are reporting to the FDA and recordings of experiences in the MAUDE report one also has to carefully assess and understand what they are reading. As one particular individual I am aware of continually cites this document and has made allegations of deaths from the therapy the fact remains that no deaths have been attributed to the VNS Therapy and many of the MAUDE reports go unanswered in terms of being able to gather further and more detailed information.
I also wish to point out that the prosthesis allows for the interrogation of the lead by a lead test which when properly executed by a trained physician should document a break and/or malfunctioning of the lead.
What I feel is necessary are calm, education, careful assessment and collaboration with one’s physician(s) and them making informed decisions.
My wife has been implanted almost 7 years with one replacement surgery for the pulse generator. Both her surgeries have been uneventful experiences with the surgical scars being minimal and of little concern to her aesthetically. She also experiences no sensations as the prosthesis cycles 24/7/365. I've also listed her settings for informational purposes only and not to suggest one follow suit.
Most importantly of all after some 37 years of searching, pain and anguish my wife has been obtaining almost continuous efficacy and benefit from this therapy like no other.
If one has some time try perusing the website and the various articles of information I’ve researched and collected. Maybe there’s some information one might have missed to assist in achieving one’s wellness.
Warmly,
Herb
VNSdepression.com
VNS Settings
Output Current (milliamperes) 2.25
Signal Frequency (Hertz) 20
Pulse Width (microseconds) 130
Signal On Time (seconds) 60
Signal Off Time (minutes) 3
Magnet Current (milliamperes) 0
Magnet On Time (seconds) 7
Magnet Pulse Width (microseconds) 500
.
"Herb" does not have epilepsy, or depression. "Herb" does not have VNS in his body, therfore cannot speak FIRSTHAND of side effects of problems with side effects, surgeons, the company, etc. One thing "Herb" has failed to mention, he and his wife lied and decieved Cyberonics just to get her into the studies.
"Herb" also omitted, he owns stock in Cyberonics. Conflict of interest?
Being the odd one out but let me tell you my experience with the one and only CYBERONICS and VNS!! I DISLIKE THAT COMPANY and feel very betrayed by them.
I have intractable epilepsy after undergoing the removal of a malignant brain tumor in 2003. I was told my seizures where going to get better but they got worse.
I was 25yrs old married and had two beautiful children. I actually worked worked two blocks away from CYBERONICS BLVD. where the lovely "miracle devices" are being made.
So,I was convinced after a year of pure hell and not being able to return to work and my life taking a complete 360 to have the VNS installed. I went to the Houston Medical Center and within a matter of 2hrs I was admitted for a night stay in the hospital. Surgery was over and done with and the next a.m. I went home.
Well, what was the % for someone developing a post-op infection or there body trying to reject the device. If I recall it is like 0.4%. I was lucky enough to be one of those people!!! I had to get a picc line put in and 5 weeks of I.V. antibiotics because my body was literally trying to push the device back out. It was rejecting it. YOU SHOULD SEE MY SCAR!! IT IS GORGEOUS!!!
6 weeks later I had my device turned on. The moment it went on I noticed something was not right. I continued having it turned on for 6more months every week. I got it turned up to a pretty high and rapid cycle. I noticed it helped with my gran-mal seizures but the amount of pain it was causing me was making me a living night mare to live with. Sometimes I would tape my magnet over my device just to shut it off.
After about 8 months of this I just had it turned off. Then 3 months later I decided after my many fights with my husband to call Cyberonics and ask them what they thought about why it was hurting so much. My nuerologist didn't care and I refused to go back to my surgeon who come to find out by cyberonics was no longer allowed to put the devices in anymore. They suggested I go and see another doctor. So,I did.
I got to the appointment and he immediatly looks at my throat,my chest,and my armpit area and says "Your device isn't implanted right." Something Just Isn't Right There! I was rescheduled to go back under the knife exactly a week later for a revision or possibly to take it out. He said the surgery will take an 90 minutes. It took 8hrs!! 8hrs to clean up the mess the other surgeon left behind and to clean up the mess from the defective lead wire that was broken out of its protective casing wrapped around my vagus nerve.
I still have my VNS in because I am meeting again with a plastic surgeon to see if any of this scar tissue can be cleaned up from the moronic surgeon who tore me apart. However,there was a defective lead wire that caused damaged too and that bee stinging that you describe. More like a million in my case. I still don't think to highly of this thing and I think I will feel better when other manufactuers start making it and CYBERONICS stops holding the Monopoly on it.
However,look it up on the FDA website about the casing on the wire on their devices. It is not something they are proud to let know they have been cited for and have a problem about.
Good Luck!!
~~Amanda
Amanda, I have also been having lots of problems. My doctor and ER doctor have said that it is because of where the VNS is placed at this point. I have been going through pain. I can't seem to catch my breath at times. It is contracting on my left hand said of my neck. My surgeon said it would need to be repositioned but has taken a different stance this last time I talked with him. He says there is nothing he can do. I can't use it right now because of all the trouble it is causing for me. My neurologist office said that were going to call Cyberonics a couple of days ago and I haven't heard anything more. This is turning out to be a nightmare.
I hope that not many people have this problem. I hope you are better.
Denise
These side effects are NOT uncommon and Cyberonics IS aware of them. They do not want the public to know of them. I went thru the same thing in 03 and had mine turned off. It was not a lead impeadance. It was not a generator malfunction.
I was in contact with Cyberonics and they were aware of several other people who have had the same problem. If you read the MAUDE reports from the FDA, you will see several that have been filed.
Even though the unit is off, I still have terrible pain in my neck, jaw. Stinging sharp, often sudden. This is damage to the Vagus nerve and/or facial verve. A lifetime souvenier from a temporary fix.
Please understand, VNS Therapy has been FDA approved for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures that are refractory to antiepileptic medications. There is no guarentee it will work, or how long it will work for.
It is permanent! The generator and leads can be safely removed, but NOT the electrodes that wrap around the Vagus nerve. I know of only one doctor in Texas who even attemps to remove them and that is on pediatrics only.
You CANNOT have an MRI. The FDA and Cyberonics have very specific guidelines for recieving an MRI but many places will refuse to do an MRI is there is a generator still in the body. You should NOT wear any kind of bone stimulator. You should avoid electromagnetic fields and that INCLUDES metal detectors. They can cause malfunctions of the unit. It is not recommended for those with sleep apnea or asthma, because it makes those conditions worse.
If this implanted in a child younger than 12 and the child experiances adverse effects or has become damaged, Cyberonics will claim USER ERROR! Be sure, VERY sure you are willing to put your child at these risks.
At the present time, I have been made aware of several children who have had their pitutary gland damaged from the VNS. This gland controls growth and these kids are living at both ends of the extreme, from zero developement to unbelievable growth. This may be a rare phenomenon, or may just be coming to light.
Children do however, on a whole, respond better to the VNS than adults.
Find out all the information you can and go with your intsincts. Do not allow yourself to be pressured by marketing fluff or sales reps.
Read the Patient and Physician Manuals. They are downloadable and available at http://www.vnstherapy.com/epilepsy/hcp/manuals/default.aspx
I also recommend http://www.vnsmessageboard.com
This board is devoted only to VNS patients with over 500 members.
Hi Lisa,
I hope the vns is working well for you. You can tape the magnet directly over the battery on your chest (under your clothing), to put the stimulation on pause while you are singing. I know someone who is an opera singer and that is what he does. w/o stimulation, you shouldn't have any voice alterations. After you are done, take of the magnet, and the vns will start working with a gradual ramp up again.
I got into a study and got the VNS this time last year with no problems. 2weeks later it was turned on and had my first adjustment. Everything was great until I went in for next adjustment and the technician or the adjustment device screwed up and I was hit with the max voltage several times within a 15 minute period. Everytime she reset it it hit me again. Finally she called cyberonics tech dept and was told how to do it. That was Feb 21st and I have been sick as a dog ever since. I spent most of this year homebound. Headaches EVERY day since, neck pain, body pain, several mentioned toothaches. I had those alright bad ones but Shortly after my teeth litterally turned black on the edges and became brittle as chalk. I just spend 5000 last year on my teeth and they were in great shape when the implant was installed. Once they turned black it was like wildfire through my mouth. All my teeth were like less than 4 months later. I think it a bit unusual for every tooth you have to all go bad all at the exact same time and exact same way in a 4 month period. Has anyone experienced the max voltage shock ? If so what were your experiences. Has anyone had anymore teeth problems except pain ? I am having an eeg and a pet scan this week and a four hour cognitive test.
The interesting thing is within 2 weeks of the shock they pulled me out of the study once they found out I called Cyberonics ( never returned call or e-mail) and then the FDA to file a complaint.
In the prestudy paperwork they do mention all these side effects you guys and myself are expering. The side effect list was staggering. I hate to take extreme issue with Herbs statement that no one has died from it. Also in that paper work was adverse advents and since the beginning of testing there has been over 30 deaths. He is right in saying cyberonics said the vns had nothing to do with them. Some were suicides, I can attest it can make you very suicidal, unknown causes, siesures, and heart attack and of course the group " death by unknown causes". Don't tell me the VNS has never contributed to deaths.
I have faith in this device. I don't know why but I do. The problem is if the thing malfunctions there is really very few dr's who have seen the symptoms or know what to do about it. The dr's need much more training in all aspects of VNS so they can properly handle all problems that arise. I would recomend anyone interested in this thing, especially for depression, wait 2 - 5 more years. Your chances of getting the results will be much more in your favor. I thought I had nothing to lose but instead I lost a whole year in severe physical and mental pain not to mention 5200 in dental work and another 500 co-pay for surgery. Keep in mind if you get on a study they don't tell you that you have no access to an MD. Your dr is blind to the study and will not break the protocol. They never checked me out to see if I could drive or walk or hurt in any way. I could barely do either. Also you sign all your rights away. Sorry for being so long winded ! Peace to All !
Echo04
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 to 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 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 device. Once the VNS was turned off I regained a normal heart beat. My VNS was programmed at 30 sec/3 min and I had approx 40 episodes of asystole. It was a miracle that I survived that ordeal.
My girlfriend got a VNS in early July, at first she was certain this was one of the best decisions she had made and was very happy with it other than it was extremely hard to talk. She had it turned up and get sharp pains in her chest and it made it unbearable for her to talk with it on and difficult to breath, and on top of that was not doing very much at all to help her seizures at all. She was talking to me about getting it taken out or turned off for good. I went and researched the side effects of getting it taken it out and found this thread. when i saw some of the stories on here i realized she was not alone with this and it scared both of us. On August 19th our fears came to life when friends of hers that she was staying with woke up to find her not breathing with no heartbeat. Of course an ambulence was sent and upon arriving at the hosptal had emergency surgury to remove it. Since its been removed even with the soreness she feels so much better and much less burdened and has decided not to take any more gambles with surgury. The device was either incorrectly installed or had broke but the wires were only partially wrapped around the vagus nerve and were sending shocks to her chest which eventually stopped her heart. Her neurologist as i had found out had pushed her into it and glamorized the device and all but set up the surgury for her with less than a week to consider it. This device may work for choice few people but from what ive seen and heard from other people the vns is not the best road to go down and seems to malfunction easily. If you decide to get this surgury know that it can be painful , it can completely change your life style and the device does have to potential to kill you, however rare the side effects may be so is getting struck by lightning and it happens and people that it happens to definetly don't expect it to happen. I never expected to get a phone call that my girlfriend was almost killed by a so called miracle device, if it sounds to good to be true it likely is.
I have had some very odd issues with my implant
not sure why but it has given me a upset stomach now for months as it comes and goes
its seems as maybe its due to surgery and that a lead may be pinching a nerve I have found at times i Can stop this at times if i lift a object with my left arm enough to put strain in the neck which then the nasua stops, but it comes back often and its hard to get the muscle or nerve back to the point for the upset stomach to cease
I also notice it seems as the leads may be pinching my chest as i can feel the leads at times.
the sensation of swiping the magnet is the worse its as someone is choking me and it feels as my lower jaw and teeth are burning as if some one is pushing a hot spike into my lower jaw for 15 seconds then it eases
so i do not swipe the magnet much at all.
Its been a few months since i had it adjusted and cant get ahold of my nuerologist to check this all out
I have been his patient for 17 years and the last few months he doesnt call me back or reply to my emails
When i saw him last he tested the leads and when he did that it felt like a hot poker going thru my jaw it was so bad i almost went into tears
I told him about it , he did not seem it was anything to worry about.
I had this implanted to help with whats called intractable headpains , complicated migrains and cluster headaches which have brought on untypical seizure which are produced by head pain i have suffered for 20 + years.
The head pains I describe are pains that are everyday but because of the medications i am on the pain is still everyday but only last a day now instead of day or weeks where at times i was bed ridden from the massive pain in the head.
I will try anything the medical profession to come up with to stop these head pains
It does depress me as to wake and go to bed with a headache as it never fails
I havent had one day in over 20 years where i havent had a headache, but at least the severity is not as it once was, but this was the case when they put me on a cocktail of many medications which makes my life more normal then it has been in years
I raised 5 children and a grandaughter with this condition
I attened college to get my associates degree but that was a slow process since at the time i was going thru doctors misdiagnosising me and treated me for everything but what i had.
one doctor had me beliveing I was crazy and the pain was from me thinking to much about the pain
but one knows when a migrain comes on how useless the migrain makes you then a cluster headache on top of the migrain and the stress headaches make a presesnce.
the day after recovering from a masive head pain my body is wore out as if was was hit by a car
I had this implant a year ago
I have had nothing but problems as this device was put in to help with organic headaches, Complicated migrains, Clusster headaches
I have lived with daily head pains for over 20 years, which are realted to seizures
I had not had a seizure in over 5 years before the implant nbut told this should help the daily head apins
The stimulator has caused nasua every day, Fatquie, trouble swallowing, cold sweats and it would freeze up in air condtioning
it was adjusted numerous times by my nuerologist of 17 years it was over 5 months and the doctor hasnt returned calls or emails
I was then referred to another nuerologist to have this looked at
I saew him today and when they went to shut this down
I was told there was no out put as it read zero as it was shut off already
I was shocked as I knew this thing was working just a few days ago, but have had problems with it for a year now
I asked them how is it possible that its turned off already hopw would the out put be zero
They did not know, but they turned everything off now they said
I am so confused and scared ,
The Docotor said i did not need to see him any more as I was just there to get this device turned off.
I really thought this was the hope i was looking for,
They made it sound so good and now the doctor who turned this on the one i have been seeing for 17 years is no longer on Cyberonics list either.
Do I have a leaking battery, a bad lead, a faulty device
I year of being sick to my stomach, tired all the time, sweating and I am a thin man but would sweat as a over worked person,
choking on whatever i ate at times even water.
Now today find out some how this device shut down its out put all by its self and not even told they wopuld look into the matter
Has anyone suffered as this
Thanks
I had the VNS from 2000 to 2004 when I had it turned off for shoulder surgery. I was experiencing a great deal of shortness of breath. I am physically active. I play handball, bike, run, and various other sports. The problem was making me VERY uncomfortable. When I had it turned off for the surgery it was like coming home from an agonizing trip. I was so happy with it off that I never had it turned on again.