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The_Dr...
VNS implant
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greetings everyone. I'm 30 years old and hve been living with tonic-clonic seizures since I was 2 and half. My siezures are located on My left and right lobe it has goten to the point where I have all types of siezures.I have any where between 3 to 6 siezures a day. now My siezures can no longer be controled by meds. due to my siezures I haved a sliped disc in My back between L-4 and L-5 and and a messed up left knee ( but that is due to something else) . I'm in a wheel chair and can not walk cause the disc is pressing against My nerves . I need back surgery and knee surgery so I can get out of the whell cahir. but in order to get the surgery's I need My siezures must be under control. back in march of 2008 I went to get a amblatory EEG . the doc said I would be in the hospital for 3-6 days. *LOL* I went in on a thursday evening the hooked Me up, I stayed the night , having siezures like i always do. on friday morning the doc came in and told Me I can go home . I asked the doctor why cause i was supposed to be here for 3-6 days. she told Me that they have all the info they need, she said that I did not have time to warm up the sheets before thay started to get info. I was having local and partail siezures with out even knowing it, along with the full out siezures. well that made Me laugh. now we are going to try VNS as a last option cause there is nothing else to try. cause they can not go in and take the siezures out cause of where they are in My brain.
My Q is what other adults have had the VNS and it worked?
Recent Comments on this Discussion
The Kat
I had my main test for the vns in 24 hour. I was also suppost to stay for 3 days and I gave them all they needed in nothing flat and went home early( next morning). I am on my second vns. I had the first for over 6 years and its battery gave out. This one I have had for around 2 years now. (My drs. have said that I may not be here now if I had not gotten it. And these drs. made no money off of this.) Everyone gets different feelings from the vns, just like everything else on earth. (I know around 15 people that have had one put in, this is how I can tell you this. ) We have talked and seen that what I feel is not what the next may feel. I also know of 2 people that have had thiers taken out. One was due that they needed their voice( singing) and the horseness was to much for them. The other could not handle the feeling they got when it went off. Everyone else has had great things from this device
I know baffgirl very well and have tried to help as she got hers in. And she can help you alot. And I will if I can. (I may have miss understood what suebear was saying, so I will leave it at this)
Good luck and if I can answer any questions me let me know. Take care no alleykat
It took the VNS six months to work which is the exact amount of time my neurologist had said to me that it would take in combination with the medication.
I'll explain it in better terms. When I went for my consultation with the neurosurgeon I was told something to the effect that the VNS may not work immediately as it needs to be tuned to specific settings and personalized for my own body. A few days later I then received a phone call from the device manufacture representative whom I asked many questions regarding it. I would be happy to look her name up for reference if you would like it.
The representative and I spoke at length regarding this device as I had many questions how it worked, how long it would last, and things of that nature. She then described how this device would be tuned at my neurologist's office by using a particular device which will be held over the VNS after it has been installed. My neurologist explained this to me further by showing me the product that would be used.
My neurologist explained to me, there are specific variables with my needs so each tweak will be documented and followed closely until the correct setting is found. I also inquired my neurologist about the settings of the VNS and how high it will be tuned. His response to me was it would not be because I did not need that much voltage. My reasoning for inquiry was due to some confusion I had read regarding the battery replacement. I discovered by my neurologist speaking to me and providing a thorough definition. I will not need another device for approximately five to eight years. Secondly, when that does occur, the entire device will be replaced as it is a plastic unit and the battery cannot be removed seperate.
You had mentioned testing, prior to the surgery. The last 24 hour EEG I had was prior to a left temporal lobe removal in 1995 and that was with a grid in my head to test speech and memory. I did have a 4 hour a few months prior to the VNS then that was done on October 2007.
I recall seeing a few posts regarding that before I even had the surgery which actually confused me. Some were saying the device can be removed but the wires cannot because it is too touchy of an area. I am no where near a surgeon nor a doctor so the posts confused me. I know the posts were on a message board but I cannot recall if it was a board with Cyberonix or a seperate entity itself.
With my VNS install I was in the hospital 2 1/2 hrs tops. 1 hr 1/2 for surgery time (so my husband tells me) and about an hour for recovery. It was outpatient and a fairly simple in and out procedure. I only have one incision at the bottom of my neck which is healing quite nicely. It's still a little pink but turning white over time as I'm putting this stuff on it which seems to be working. The surgery was performed by a wonderful neurosurgeon I knew because we had met a few years prior so it helped that I knew his credentials and how long he had been performing surgery.
Unfortunately, I cannot spend a lot of time here on the board reading because I have a business to run and I am an adult graduate student finishing my last term. I would be happy to answer whatever questions you have regarding my posts so feel free to ask me.
Sue Bear
Something I want to correct after reading the comment below. It does not make you horse for a day or two. I have only had those types of issues for 30 minutes. Not 24 hours. Please watch where you get your information from okay?
I had the VNS implant installed as of October 2007 and have been doing quite well with it. Secondly, my seizures are complex partial. I got seizures from a scar which ocurrred from a high fever. I got it after receiving a vaccination(s) shot. I was born in '68 so in doing the math, I'm 40 years of age. *grin* Back in the day, the federal government liked to change things up a bit and try to make it easier when providing drugs to kids for their monthly shots. Well, I was one of the "guinea pigs" who it failed on as it gave me a scar and it caused epilepsy. Took us years to figure it out because our technology wasn't the greatest back then.
Fast forward to 90's, I had brain surgery in 95 that with a few mixed doses of the right med I became seizure free for six years. Worked great unfortunately the seizures came back. I got stuck with the complex partials again, ugh! Medicine was working but still giving me hell. So we started looking at this VNS option. I did some checking around and decided I had nothing to loose. I had a great neurosurgical team that performed the surgery and I was out of the hospital within 3 hours.
I went to my neurologist office and the device was turned on at it's lowest setting. It actually was interesting to discover even without the first tweak the device worked. I had an aura on the night of the surgery, swiped the device and WHAM, caught the aura and the seizure was stopped right in its tracks. I was so amazed it was like Christmas in July! Called my doctor's office the next day totally excited, they probablly thought I was nuts or something.
Two weeks after the surgery, I was back at my doctor's office to get my first tweak of the device and since then I've had a total of five tweaks to the device. We did a medicine change as the ones I had been taking just stopped working. It has been past the six month mark and there's been an improvement.
Something I want to make a note of, pay attention to your doctor and what they tell you about the device. Listen to the neurosurgeon and what information they give you about it. Before the surgery, plan on having a consultation with the neurosurgeon so you can have all of your questions answered. That is exactly what I did and I took my husband with me so he could be my second set of ears and possibly pick up on things that I may miss.
As for your back injury, been there done that. I injured mine in a car accident after moving. No, I wasn't driving however I was riding in the passenger seat at the time when we were hit from behind. Yes, my lower back is damaged but from what I was told, it can be repaired without surgery. I went through everything with it as far as the shots, physical therapy, etc. I even saw two surgeons to get their opinion. Something I learned, anyone will do surgery to make their money but it's important to note once you get that surgery it cannot be undone. Be sure you've gone to someone who really knows that it's the only way it can be fixed. The damage that is wrong with my back is actually the trigger points in the lower area and it affects all the way through the spine. When one goes off I can feel it go right through BUT I don't need surgery to correct them, I can fix it with water therapy.
Oh, I had a doctor tell me I had a damaged disc too but you know what? That disc fixed itself as they are made to do that. The only way they don't fix themselves is if they physically blow out and need immediate repair. I've been through it all for two years and finally discovered the real truth of the situation from a neurosurgeon who told me exactly how things need to be handled.
Good luck whatever decision you make!
Sue
SUEBEAR,
EVERYONES EXPERIENCE IS DIFFERENT. YOU CANT CORECT MY COMMENT AND SAY YOUR COMMENT IS CORECT AND MINE ISNT. WHEN SAYING "PLEASE WATCH WHERE YOU GET YOUR INFORMATION FROM" RIGHT AFTER THAT. WELL SUEBEAR, I DONT LIKE YOUR ATTITUDE AT ALL. YOU ARE CALLING ME A LIAR ABOUT THE SYMTOMS I HAVE HAD AFTER I GET MY VNS TURNED UP. THAT IS WHAT I WENT THRU, NOT YOU. I AM VERY HAPPY WITH MY VNS, BUT I AM NOT GOING TO TOLERANT ANYONE BASHING ME.
THE TRUTH OF IT ALL IS, WHEN YOU GET THE VNS, YOUR BODY WILL WILL REACT TO IT IN ITS OWN WAY. YOU MAY BE HOARSE FOR A FEW HOURS, A DAY, 2 DAYS, WHATEVER. NO ONE CAN TELL YOU WHAT IT WILL BE. IF ITS TOO ANNOYING, YOU ADVISE YOUR DOCTOR IF IT IS TOO MUCH AND HE TURNS IT DOWN A TOUCH TO RELIEVE IT.
TO SHOW AGAIN WE ARE 2 VERY DIFFERENT PEOPLE YOU ALSO WERE ONLY FIGHTING COMPLEX, I HAVE, TONIC CLONIC, COMPLEX, SIMPLE, AND ABSENCE. SO PLEASE NEXT TIME YOU DECIDE TO BASH SOMEONE, DONT. YOU ARE NOT THE FINAL WORD ON THE VNS AND THE YOURS IS NOT THE ONLY WAY IT WORKS. THERE ARE MANY DIFFERENT PEOPLE OUT THERE AND THE WRITER OF THIS WANTED DIFFERENT PEOPLES EXPERIENCES, NOT JUST YOURS.
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
Excuse me. I didn't "bash" you as you put it. There is no need to get emotional about it. I do apologize if you feel I said something that was personal. I made that point for a few reasons. My neurologist, neurosurgeon as well as Cyberonix said patients would not experience hoarseness. Secondly, I have not experienced hoarseness when I have been turned up it has only been 30 minutes. Note: I have 30 minutes.
Perhaps when writing documentation and your experiences, a note with your experience can be included seperately so it doesn't appear as it is a medical fact? I do my best at keeping my experiences and medical information seperate however when I quickly post sometimes I forget to do it myself.
I joined this board because I knew I could raise awareness and also provide experience and professional information to others. Please do not get an attitude with me over something so petty. To err is human. *shrug*
Regards,
SB
IF YOU READ THE BOOK FROM THE MANUFACTURER, IT EVEN STATES IT DOES CAUSE HOARSENESS. SO IF YOU WANT TO STICK TO FACTS, THAT IS FINE. THOSE ARE THE MEDICAL FACTS OUT OF THEIR MANUAL THAT YOU GET WITH THE BATTERIES.
THE VNS IS A GREAT PRODUCT IS PERSONAL OPINION.
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
I AM VERY MUCH LIKE YOU. I HAVE HAD EPILEPSY ALL MY LIFE(I AM 50 NOW). IT WAS CONTROLED TILL ABOUT 5 OR 6 YRS AGO. THEN IT WENT BONKERS. THEY TRIED EVERY COMBO OF MEDS THERE WAS. I FINALY GOT A VNS PUT IN THE BEGINING OF FEB OF THIS YEAR. I HAVE STOPPED HAVING TONIC CLONIC SEIZURES ALREADY THOUGH I AM STILL HAVING ABSCENCE, SIMPLE AND COMPLEX. THE LONGER THE VNS IS IN, THE BETTER IT WORKS. I AM STILL GETTING MY AMPS ADJUSTED UP. THE NEURO I GO TO DOES IT A LITLE BIT AT A TIME TO GIVE YOU TIME TO ADJUST SINCE IT DOES MAKE YOUR THROAT TICKLE A BIT WHEN THEY TURN IT UP. YOU WILL SOUND A BIT HOARSE FOR A DAY OR TWO IF YOU ARE TALKING WHEN IT GOES OFF.
I HAVE NUMEROUS FRIENDS WITH VNS, BOTH GOT THEM IN THE LATE 90S. THE ONE LADY KNOWS NUMEROUS OTHER PEOPLE WITH VNS THAT ALL HAVE HAD THEM FOR A LONG TIME TOO. I WAS REALLY GLAD TO HEAR ABOUT THE LONG TRACK RECORD THAT THEY HAD.
I CAN RELATE TO THE PROBLEMS YOU ARE HAVING, MY BACK ISNT AS BAD AS YOURS, BUT I SCREWED UP MY LOWER BACK YEARS AGO AND IT FLAIRS UP AT THE LITTLES AGRIVATION NOW. PLUS I DEVELOPED ARTHRITIS IN IT BY THE TIME I WAS 40. I DONT REMEMBER THE EXACT #S BUT IT WAS THE LOWEST L'S. I HAVE FALLEN ON MY KNEE SO MANY TIMES FROM SIEZURES THAT I ENDED UP HAVING SURGERY ON MY KNEE THIS MAY AFTER I STOPED HAVING TONIC CLONIC SEIZURES. I ALSO HAD TO HAVE SURGERY WHEN I WAS IN MY EARLY 30S FROM DISLOCATING MY SHOULDER SO MANY TIMES IN SEIZURES. THEY HAD TO PUT A METAL PIN IN IT. SEIZURES ARE HAZARDIZE TO YOUR BODY!!!!
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.