I can tell this topic isn't new, but I'm new to this forum

[walksalot]

I'm 64 and I've had seizures since I was 24, from a head injury. Among many drugs, I've taken phenobarbitol and dilantin Depakote, Tegretol, Lamictal, Topamax, etc. I even took several of the now brand names when they were investigational drugs at the Ohio State University Neurological Clinic. I've had all classes of seizures starting from absence and progressing to simple partial, to complex partial. When my doctor tried to help reduce the cost of my medicines because of Medicare Part D, I was switched from Lamictal to valproic acid, and I developed Grand Mal seizures. HURRAY, I finally made it! I have all 4 classes now at one time. I've never been controlled, nor do I expect to be, but I have managed to live as normal a life as someone with epilepsy can. But, I also finally decided to get the VNS surgery done and it's scheduled for 9-19-08. Has anyone else out there had it yet? Does it work for you?

 

[Bernard]

Hi walksalot, welcome to the forum. :hello:

There are several members here who have (and had) the VNS. Birdbomb (a moderator here) also maintains a forum dedicated the VNS.

 

[Nancy]

Hi walksalot -- welcome
I'm 64 too. I started having seizures in 1990 thanks to a brain tumor.
Isn't it too bad our brains are so SENSITIVE?
I sure hope the VNS does a world of good for you.

 

[Cint]

Hello walksalot,
I started having seizures "out of the blue" when I was 23, no head injury, tumor, encephalitis, etc. I've been on numerous meds, had a left temporal lobectomy, and have had two VNS surgeries. The VNS isn't a cure-all, but for me it has helped with the CP seizures, but we've had to go to the highest settings, which some people find rather irritating. It does take some getting used to. It can cause shortness of breath, it effects your voice so some don't like to talk when it is charging. And for others it did nothing at all.
I hope it works for you.
Cindy

 

[walksalot]

Thanks for the welcome, guys. I feel at home already. My husband thought the VNS changed your voice permanently and for years I tried to convince him it was only while it was charging, but he refused to listen. Now that I told him I am getting this done, he let me explain it all and seems ok with it. I just don't know how often they will set it for, so that's an unknown right now. Three of my doctors recommend this for me, so I think it must really be right for me. I sure hope so. At this point, I'll try almost anything.

 

[walksalot]

I checked out Birdbomb's website about VNS and now I'm a little frightened. I don't know the incidence of the adverse effects, though. Having had grand mal seizures now and hoping that maybe, since I have plenty of warning that I'm going to have one, I might be able to lessen the effects of one if I have the VNS device. I've talked to Beverly Lynn at Cyberonics over and over the last couple of weeks and to three doctors over the last two months who all suggest that I need one, I really feel like I need to try it, at least. I know it wouldn't stop the seizures, but over a period of time it could help lessen them. They can always take it out. I feel like I am in jail at home right now. I guess I just need someone else to agree with me that I should do this.

 

[Bernard]

Most folks who have good experiences with the VNS don't feel the need to post on a forum, so the VNS forum is naturally going to be biased towards the folks who are experiencing problems. That said, there are some very serious potential problems that one risks with the VNS.

There are a couple of options (diets, neurobehavioral therapy, neurofeedback - see chart linked in my signature) you might explore if you are having reservations about the VNS. Some of them take a while to realize results though, so if your situation is unworkable, the VNS might be your best option.

A couple other nuggets to ponder:

drug resistant epilepsy

VNS discussions

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

http://www.coping-with-epilepsy.com/forums/f22/andrews-reiter-epilespy-research-program-1039/

 

[RobinN]

My daughter started out having tonic clonic seizures two years ago. We tried medications, to only see an increase in episodes and weird side effects. She was having 6 per month.
She is now med free, and just about controlled, by nutritional changes, vitamin and minerals that support brain health, and neurofeedback.

I would wish that you would try this before the VNS.

 

[Birdbomb]

Hello walksalot!

I have tried 4 times to answer this post and my pc has crashed every time! GRRR! Had a really nice post last time too.

Anyway....The thing about my site. we are not pro active nor are we antagonistic towards VNS. It's members who are sharing their EXPERIANCES with VNS.

If you have a TBI you had better do more reserch into this and get it in WRITTING from Cyberonics that VNS is approved for TBI. At presesnt it is NOT and from the posting of my members, their TBI has been made worse because of VNS.

I suggest you download and read the Patient and Physician manuals. Talk to people with the VNS both good and bad experiances. If you'd like to call me, I'll be happy to speak to you, just shoot me a pm and give you my number. Just go into this with your eyes open. Doctors and company Reps are not always the best informed, even spokespersons at the Cyberonics office have been known to give out false info. ( it's been recorded!)

VNS is beneficial to about 1/3 of those implanted. The more medical issues you have the more problems you will experiance. Over 44,000 have been implanted but 1/2 of then are turned off so be very careful in interperting "statistics"

Right now, what I find in the google searches coming into my site is people looking for information into EXPLANTING the device. This doesn't really surprise me. You need to be aware this has a BLACK BOX warning from the FDA. This means it's considered a permanant device. Even though the generator and lead wires may be easily removed, the electrodes that wrap around the vagus nerve cannot. A few surgeons will attempt removal but it depends on how long it's been implanted, amount of scar tissue and if it will damage the nerve. Don't fall for the lie "it can always be removed"

Get past the marketing puffery and weigh the benifits vs the hazards.

 

[walksalot]

Hi Birdbomb,

I checked out the links and downloaded the manuals and read them carefully-especially the warnings, of course. Cyberonic's own warnings were what surprised me the most. After I read your post this morning, I had to wait a hour to call Cyberonic becauseof the time difference, but I called and them the adverse effects were too many for me and I didnt think, after all, that I was sure about having this done. I wanted to talk to my own physician about this again. The date of 9-19-08 had been given to me as a date of surgery when it was only the date I was to consult with the surgeon. I did not know that. I called the surgeon, Dr. Pema in Columbus and canceled the consultation and did not reschedule another. I also called my doctor at OSU and told the CNP there (who I actually see more than the doctor--who goes on holidays more often than he sees patients anyway-) and told her, also, I was not sure I wanted to go through this right now. She had actually recommended I wait to have this done at a later date even though 3 doctors had said to do it now. I can't thank you enough for sending me the links you did. Cyberonics misled me. I was told this device would stop grand mal seizures but I was not told about the adverse warnings. I did already know some of the side effects, but I didn't know removal was such a problem and I certainly didn't know some of the more serious side effects that are possible. I was lucky enough not to experience any side effect of any of the investigational drugs I took, but there's no guarantee I would be lucky this time.

 

[Birdbomb]

It's all about making an INFORMED decision.

That's hard to do when most of that information is not give freely, lied about and often denied by the employees of the company.

When you get a prescription filled, the pharmacist gives you an information sheet with all the KNOWN and POSSIBLE side effects, precautions, warnings, those who should NOT take that medicine and any drug combinations to avoid.

VNS is not afforded the same. If you know beforehand EXACTLY what you are getting into and then choose to have VNS, then you are doing so at least reasonably informed. You will not recieve a handbook with some of this information until AFTER it's been implanted. Isn't that insane? Not to be told the necessarry facts until they have your money?

When told " the only side effects are a little voice change or coughing" that is misleading. Company reps say, "I've never heard of _____ side effect" but that doesn't mean it's not happening, like they imply. Most doctors are too busy to to any intensive research on their own and rely on these Company reps for information.

Patients need to do their own research and QUESTION, QUESTION, QUESTION!

 

[ashmstng]

Hello Walksalot~

Welcome to CWE Board. I hope you find all of the information you need. Just like I see you doing talk to Birdbomb, she knows about the VNS. I have one. It was implanted in 2002. It has not helped me. But everyone has a different story about it. Make sure you read about it before you do the surgery. I wish I never got mine. But I cant say, "at least I tried." I hope you the best on what you decide to do. Take care.

 

[walksalot]

Hi Ashmstng
If I hadn't found this website and even mentioned that I had considered VNS, I wouldn't have been given the advice I have received and wouldn't have made what I consider to be and informed choice after having had read the information sent me to. All I can say at this point is thank God I was on my computer the other day searching for anything that might confirm my decision and finding the opposite instead. Birdbomb opened my eyes for me. I might have made a very bad decision for myself otherwise . I can handle the complex partial seizures. My complex seizures make me do silly stuff, say stupid stuff, act in stupid ways. They have caused me to iron my left hand 3 times and burn myself numerous times in other places. I held a pot of boiling potatoes against my stomach and got a 3rd degree burn just a year ago. But I can live through those things. I just worry about the grand mal seizures and status epilepticus. I don't know what can be done about that. I do know I won't have the VNS surgery at this time. I'm sorry yours hasn't worked for you. I've told people that I would drink bleach if I thought it would help me. This is just so frustrating when most people just don't or aren't willing to understand.

 

[walksalot]

Hi, Birdbomb

I copied the possible adverse effects of the VNS device to show to Jim tonight. I'm sure he'll agree with me. I'd like to read them to Cyberonics, but I think I'll let it go. Thank you for helping me make this decision. I think I would have made a bad one if you hadn't given the links to go to so I could read and make up my own mind. Thank you so much.

 

[walksalot]

I'm getting notices in my email that I have messages here, but when I click the link, I'm sent here and nothing appears. If I need to do more to get them, somebody tell me what I'm doing wrong and tell me the right way to do it. At any rate, I've decided to at least talk to the surgeon at length on the 16Th. I haven't had a complex partial seizure for at least 3 weeks, maybe more. I can't recall an absence seizure, but those you can have and not know it. Maybe I've had a few simple partial seizures, but I consider those to be a drop in the bucket. Since I've had so few complex partial seizures, I don't think they'd be able to program the VNS device very well to try to capture one. I still think I want to talk to Dr. Pema, though. He's not a puppet of Cyberonics, so I think he would give me an objective point of view. Maybe this VNS just isn't right for me anyway, no matter what.

I just want them to adjust my medications to control the grand mal seizures.

 

[Birdbomb]

Making a choice about VNS is a very personal decision that needs careful considerations of all the facts. If the information was readily available, not misleading, not marketing ploys and presented like the pharmaceutical companies do with the flyers like we get with our prescriptions BEFORE it's implanted, then people would be making informed choices. Most often people aren't made aware of all the possible side effects until AFTER it's implanted.
That is really a dirty way of doing business.

Maybe later on down the road, after you have spioken to several others, this might be an option.

Trust your gut! If it looks too good to be true, if it's dressed out like a Christmas ham, if you have any doubt what-so-ever...dig deeper! Research more...trust your own instincts!

Please notice the careful wording, and the way the staticis are presented, it's all very misleading. I was on the new site the EFA has just established and was appalled at the inaccuracies! The person who wrote that knows NOTHING about VNS. It sounds like a rendition from some third party who came in late to the conversation. This kind of information will do harm to so many innocent people. Not everyone knows how to use search enginges and look for themselves.

Good luck in what ever you choose. You are welcome to my site at anytime :yippee:

 

[Bernard]

I'm getting notices in my email that I have messages here, but when I click the link, I'm sent here and nothing appears. If I need to do more to get them, somebody tell me what I'm doing wrong and tell me the right way to do it.

Look in the top right corner of the page, just under "Welcome, walksalot". You should see a link/menu indicating that you have messages or a link to your private messages inbox.

 

[BuckeyeFan]

My complex seizures make me do silly stuff, say stupid stuff, act in stupid ways. They have caused me to iron my left hand 3 times and burn myself numerous times in other places. I held a pot of boiling potatoes against my stomach and got a 3rd degree burn just a year ago. But I can live through those things. I just worry about the grand mal seizures and status epilepticus.

You have every right to worry about all of these things. They can be very serious. Please don't hesitate to come to CWE for emotional support as well. We do a lot of leaning on each other here. There is even a PADDED ROOM if you feel like you just need to scream sometimes.

Would you mind telling me which Columbus hospital you visit? I am from Ohio and always appreciate personal reviews of doctors/hospitals.


Best Luck to you and all of our prayers as well.

:rock:

 

[walksalot]

Hi Buckeye Fan,
It's good to "see" you.
I see Dr. Moore at the Neurology Clinic at the Ohio State University Clinic, and when I am hospitalised, I go to the University Hospital there. I'd have to say I rate them at the top of my list.

I will be changing neurologists in the future, though, but not because of my care. It's a 90 mile drive for me to go to Columbus from Portsmouth and there is a super neurologist at King's Daughter's hospital in Ashland, KY, which is less than 30 miles away. I never knew this.

Thanks for the prayers. You can't have too many.

 

[walksalot]

Hello, Bernard.
Thanks for the help. I don't feel so awkward now.