Hello to you all
My daughter is turning 17 next month. She has battled E since she was 2.
FINAlly we have a diagnosis. And Sick Kids hosptial Toronto says she is not a surgery candidate. I was so hoping that we could have it done and a miracle cure
No such luck!
VNS is the only option offered at this point.
I'm not sure I like it !
Could anyone with more knowledge tell me if there is restrictions on things that one can and can't do with it inserted?
Not sure about all Doctors and the US but here in Canada I have heard that some if not all Doctor's won't even attempt to take out the "rod" or wire or whatever you call it as the nerves apparetnly adhere to it and it could be dangerous to remove.
My daughter is a good and sweet kid. Her one wish is to drive like all of her friends !! She is also a good driver (a little birdie told me) :D
Well I look forward to meeting you all and getting to know you (till now I usually went to EFA board) really nice people there and I will continue to get support there, and receive and offer advice from personal experiences.
Thanks for any assistance C & C (Stands for Carol and Crew)
Doubt I will know if I have replies as I have not signed up yet can I put in my E address here ? C & C

Howdy C&C!

Welcome!

You will not get an objective answer to that question here because you will never hear from the people who asked themselves that question and answered: NO!...
You will only get the reactions of people who initially decided to do it.

About the only restriction I can think of is that you can't go through a metal detector at the airport or the bus depot. The VNS has the same sort of restrictions as a pacemaker. After all... it is a pacemaker only it's wired to the neck instead of the heart.

If she loves to sing she should know that the VNS will probably have adverse effects on her singing voice.

For information about the scar issue, you'll have to talk to some of the ladies around here.

For more information about the device itself, see my site:

The VNS From A Patient's Point Of View

IMO: This is a personal judgement call and the only person who can answer that question is your daughter. If she does decide to have the implant, by the time they get around to scheduling the surgery she will probably no longer be a minor!

:Welcome:
Thanks Dave

Couldn't have said it better, however, I want to add my :Two Cents: !

Most medical people outside the field have no idea what a VNS is. Should your daughter need medical attention outside of her normal medical professionals, they just may refuse to treat her. Mainly out of ignorance and fear of malpractice.

I have had the worse luck with emergency medical care. I strongly recommend you carry your patient handbook (available from Cyberonics, just for the asking) and a short medical history.

The VNS is not a miracle cure, it is ADJUNTIVE therapy. It helps about 1/3 of those implanted. Very few are able to go completely off their meds. For some the seizure activity increases. Almost everyone has some side effects.

During a recent Neuroscience Comference here in Las Vegas, one thing the neurosurgeons did say was before they advise brain surgery, they would rather try the VNS as a last resort. Even though it is invasive in itself, brain surgery is much more dangerous.

C&C, PLEASE,PLEASE,PLEASE, research all you can and make an informed decision. Go to the Cyberonics website and download the physician's and the patient's maunals. Read them, get familur with the good it does and the side effects it causes.

Good luck. Knowlege is POWER !!!

Birdbomb B)

Hello, and welcome to this board. :Welcome:
Has your daughter tried everything out there. There are so many meds, and more are coming everyday. I would make sure that she has gone through all of them before she tries a VNS. What kind of seizures does she have ? And what does she think of the whole VNS idea?

I so remember being 17 and wanting to drive, I was able to finally do it with meds by 18. But, that went out the window when I got pregnant with my son years later. Anyways, I do feel for her, and know just were she is at! :wacko:
Elisa

Making that decision is the hardest thing I have ever done, only I did it for a 5 year old.

It took my hubby and I over a month to weed everything out, and make a very rational decision.

Knowledge is a great thing.

Kevin is also a NON surgery candidate, his only surgery (so far) is the corpus collostomy (brain split) and the VNS so we opted for the lesser of the surgeries.

The VNS has been and still is a great help in our situation, Kevin was on up to 4 different meds at one time and is currently on only one now (Zarontin).

Kevin has had the VNS now for 2 years, and if it wasn't for the neglect of his EX neuro we still would be on track with a lower count of seizures. It is really hard to play "catch up" with this seizure game....

Please know more than the neuros, in whatever decision you make know that it is the best thing for your daughter... you and your daughter know your daughter's situation more than anyone one else in this world....

Hi Everyone
Thanks for all of your replies!!
Sounds like a wonderful group of new friends here!
Ok I should give you a little more info on my daughter.......... Sorry this is long!

Jazi is turning 17 next month, (wish this one had pictures) as EFA does!! I like to see everyone.
Anyway Jazi has had seizures since she was 2 years old. They started when she was 2 and had pneumonia. I guess when they first started I asked her if it was scarry (she was so little!) she said yes, then called them "scarries" for many many years (took us a while to figure out what was going on). We kept getting mis diagnosis over and over. "pseudo siezures" I faught and faught for what I KNEW. Finally some one at the seizure conference spoke up and said they were seizures as well as them doing the necessary testing to prove and find.
Anyway they are unusual seizures, (apparently). They could not pin point the seizure focus as they are all over. She has a clear cut Aura or SP OF ( L) side of body tingling (so I thought that for sure they would be able to find and operate)!
WRONG!! So now they are refering us to a VNS Doctor at Sick Kids as well.
I have done a ton of research on seizures and no matter how much I couldn't clearly say it's FLE or TLE, or whatever! No wonder even the surgeon on the team couldn't figure it out LOL! (and I am determined but no brain surgeon) LOL
She has been biting either her lip or tongue or side of mouth lately. I got her a mouth guard which she wears like a trooper but she takes it out during the night and has to look for it in the AM. She very often has seizures out of sleep, she sits up and looks awake but she is not and has her seizure then just goes back to sleep! During her seizures she blurts out what ever she says first then other things like Hug hug hug (it repeats) or if you hug her she says things like harder !! And she has said other strange things as well. She usually slaps her knee or whatever with one hand, gasps and gulps EKG speeds up. (so her heart) Sometimes she says help help help make it stop ! Car vibrations make a CP worse she begs you and repeats stop stop stop stop. She looks really out of it. If we had the money I would look for some other kind of theropy to see if that would work. They come in clusters. She is on Trilepitol, 2550 mgs per day half in AM half in PM. We had facial burning one time when by accident she took her meds twice. Was VERY SCARY! Went to ER. She is in her last year of High School, wants to go to College and get her E.C.E. Next year. I have 3 kids and she is the GOOD ONE !! Why always the GOOD ONE!! She has tried 5 or 6 meds. Started on Tegretol when little so it rules to reason that one in that family works (sort of) for her. It has the least side effects as far as I can understand. OK I probably answered all of your questions and then some! I don't like the idea of VNS, (Sorry to all who have it) the odds just don't sound that good to me and I don't like the idea of having some pacemaker in her body. Am I wrong? What other alternative is there? I wonder if we should wait for something better to come along. However Sick Kids is the best around and in one year she will not be eligable any more !! (at age 18) she would have to go somewhere else for adults. She is the type of girl that if you know her you love her and trust her what else can I say (oh ya she's gorgeous too!!)
Sorry this is so long. .... Still want to do more research. Thank you all so much for replying We have Neuro apt. October 6th to get seizure conference results (which I already know) pretty much. And I am told we are being reffered to a Doctor who does the VNS. I printed out and gave her the guys replies and when she read that VNS can make seizures worse she didn't like the sound of it !!
If any of you have good links I would like to read more. Thanks for your replies and for taking time (those of you who have patience to read all of this.. Best Wishes C & C

Well, I do have to say you answered all of my questions and then some. My seizures and your daughters sound a lot a like. For years mine only came from my right temprol lobe, but now they are all over the place.
I'm glad that your daughter got to read everything that we wrote, there was lots of good info on there.
More then anything, I think you need to try some more of the meds out there. She really hasn't tried many at all. It may take more then one, maybe two that work well together. Has she tried Lamictal, or Dilantin, both of them work well for me. I do the very best on Felbatol, but that med. is used as a last resort, because it has been known to cause aplastic anemia. Both the truth of the matter is most AEDs can cause aplastic anemia, but for whatever reason Felbatol got the most press about it.
Anyways, good luck with everything.
Elisa

Elisa
Thanks for reading all of that, LOL!
Were you ever asessed for surgery or did you not want it?
I have wondered why they have not tried more meds perhaps because the one she is on costs $500.00 a month in itself!!
Do you have the VNS?
I really don't like the idea of having something foreign in her body and especially a thing in which some parts can not (or they will) not remove!
To me it seems like a very BIG decision and I don't like the sounds of it much!
Not sure she does either!
Trying to keep an open mind and going to see Neuro Oct.6th
Not that I believe that he will offer any other solutions (we don't like him) he was just another of the many NON believer Doctor's that we have had to deal with (he had his mind made up when we first went to see him that she had Pseudo seizures) and only did the first test to "prove me wrong" the rest is history!
Prayers appreciated I do believe in Miracles !
Without hope and faith one has nothing!
Thanks again! C & C

Hello again! I would love to PM you, because I have a lot of say about all of this. In short YES, to most of your questions.
Yes, I did a work up for surgery, and even had it in 1992. A good part of my right temprol lobe was removed. It did help a little, but like I said in my last post my seizures come from both sides of my brain.
Yes, I had a VNS, it was put in in FEB 03 and removed in FEB 04, because I am one of those people that it caused more seizures in. Not to mention all kinds of other not so nice side effects. Just to name a few, headaches, left ear pain,left jaw pain, problems with site in my left eye, it messed with my hormones, urine out-put, bowels, and stomach issues. ( just as a side note, I would do brain surgery again, before I would let them put another VNS in me) :Icky:
Now, don't get me wrong I do understand that there are people out there that the VNS works for, and I am so happy for those people. I so wish I could of been one of them, but I wasn't.
I ended up with a VNS because like you I went to a new Neuro, and VNS was the first thing out of her mouth. She was hell bent on getting one into me without even trying any of the many new meds that are out there. ( I hadn't changed meds in 10 years) My reason for trying the VNS was, I wanted to live life without the side effects my AEDs. I was told that the VNS had very few side effects, and I would most likely be able to lower my dosage of the AEDs that I was on. As many times as I asked about the side effects of the VNS, the only answer I could get out of anybody was " your voice will change a little". They kept telling me that VNS was perfect for a person like me, done surgery already, and I'm also very sensitive to most meds, meaning that any side effect possible I will get. Well, I learned very diffrently.
Anyways, I have lots more to say, but I'm running out of time. If you would like to email me directly, I would happy to answer any of your questions. elisa@maine.rr.com
Have a great day,
Elisa

I was wondering if you went through with it. I am facing the same dilemma. We have 5yr old foster twins. The boys have had a seizure disorder related to their biological mother's drug use during pregnancy along with asthma and ADHD. They have been on various antiseizure medications, level adjustments, etc but nothing seems to effectively control the instances. Seizures are varied in type and intensity from full blown grand mal to momentaty "space out". They are usually most intense when associated with fever. They also get them frequently when playing outside..getting overheated or excited...things kids like to do. They seldom have any apetite due to the Topomax & Depakote which I also think contributes to their behavior and development. Our goal is to reduce meds & increase apetite as well as provide more opportunity for them to grow up like regular kids. Will VNS provide or contribute to this?

Steve-
I don 't know if the person that I'm talking with here went and did a VNS with his daughter. You need to ask lots of questions, there is a parents forum to go to if you would like to ask parents questions. But, feel free to ask all of us that have had a VNS questions as well.
Your twins are very lucky to have you, good foster parents are hard to come by.
( I grew up in a house that always had foster kids in it)
Have you tried any other meds other then Topamax? Depakote should be putting weight on them, and helping with the eating, I take it it's not.
I do think that the VNS works better in children then it does in Adults, but that is just my opinion, and everybody is diffrent. There are lots of children that it has failed in as well.
Something to keep in mind is your children are still very, very young and they are still growing. The ancors or coils can't be removed, because it can cause damage to the Vagus nerve. The vagus nerve is the 10th cranial nerve and not only goes up to the brain, but goes down to the intestines and stomach. It covers most of your body, head to toes. :Icky:
So, my point in telling you this is, what happens if they grow bigger then was expected, and the coils and wires in the neck get all stuck and are pulling, then what do you do?
I'm a grown women and my generator settled in my chest and left me with the wires pulling across my neck, it didn't feel that good when I went to turn my head.
Just a little info for you.
Ask lots and lots of questions of everybody here, make sure you understand fully what all the side effects of the VNS are. Getting a VNS is really not that much diffrent then trying a new med., you have about a 1/3 chance of it working and being able to handle the side effects. So, I would make sure that I tried every AED out there before you get a VNS. Hopefully you will find the right answer for you, and your boys.
Elisa

Steve-
I also found this link at Brain Talk that talks about the side effects of the VNS.
These posts have some of both, good and bad experiences.
http://brain.hastypastry.net/forums/showthread.php?t=43123
Good Luck,
Elisa

Beleive me we have tried several different meds - the depakote being the only one that was consistant throughout. Their neurologist has suggested one more - the name escapes me - but he said it could be lethal. I've read up a lot on VNS but never actualy spoke to someone who had it. The growth thing was something that didn't occur to me. I'll be sure to ask about it. We were told that the leads could not be removed if they "grew out" of the condition. Seizure activity is much less now than it was two or three years ago - only a minor one every month or so unless they get an ear infection or some other fever. I don't know if that's the medication, or they are growing out of it or us as parents just being smarter about letting them get into situations where we know will bring one on. Maybe a combination of all three. I'm also leary of how they will react to a foreign body in their chest - heck, they won't even leave a bandaid on.

I have had everything removed but the coils and they cut the leads to the coils. For me it is causing atypical facial pain, other wise known as TN , very painful.
I didn't do well with a foreign thing in me. Had to learn to sleep on my back because it hurt to sleep on either side. Having anything push up against the generator was painful. Had to put the seatbelt behind me, so that it didn't rest up agianst the thing.
Is the med that your doctor taking about called Felbatol? If so, there are very few people that had any issues with it, and it is a very sucessful drug,for a lot of people. It got a bad name and I really don't understand why. Almost any AED out there can cause aplastic anemia, Felbatol just got a bad rap.
I have been on it for over 10 years, and there are some others that post here that have children on it, if I remember right.
If your boys are only having 1 seizure a month, in the world of seizures that is great! Don't mess with it, the grass is not any greener on the other side. VNS can cause you to have more seizures, not less. I was one of those. When the VNS was shut off, the seizures didn't stop happening.
Like your boys I had only 1 to 2 seizures a month, that has changed now.
I do wish you the best of luck, and hope you can find your answer.
Elisa