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vns therapy side effects
Wed, 02/15/2006 - 10:10Comments
Re: vns therapy side effects
Submitted by ChiTownDale on Tue, 2008-04-22 - 00:37
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.
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.
Re: vns therapy side effects
Submitted by banffgirl on Tue, 2008-04-22 - 02:32
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
Submitted by SunflowerPower on Mon, 2008-01-07 - 21:08
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 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.