Hi! I am new to this so please be patient. i have grandmaw seizures and i have had them for 10 years now. They have progressively gotten worse until i am now having 3 to 4 a week. I am going to have a surgery to have a Vagal Nerve Stemulator put in to try to control or cut back on the seizures, does anyone have one in or know anything good about this device.Please let me know some good news. thank you.
They are willing to implament the VNS for 3-4 seizures per week? I'm suprised. Very suprised.
I know 3 patients with it, one had the very early model, first gen; the others had the second version. The first recently had it replaced due to battery drainage and now has the newer model (102?).
They install a lead (wire contact) up to your neck on the vagus (sp?) nerve. Now they have it so only the contact will remain and they can remove the wire (if needed later on) if I recall the new procedure. Anyway, it's a pretty simple procedure.
It's a small device, I think about 2x2x1/4 now for the 102. After the procedure it remains OFF for a couple of months to let the body heal over the contact on the nerve and adapt to the foreign object being in the chest. Once activated they will SLOWLY and I do mean SLOWLY adjust it to a setting that will end up working for you. This could take 6 months to one year trying to get the setting correct. YOU REMAIN ON YOUR MEDICATIONS. They may be reduced slightly at most.
Often the patients feel a "tickle" in the throat when it cycles on. If they speak when it's on the voice is horse. But not with everybody. If you have a seizure when it is cycled off USE YOUR MAGNET as soon as possible to activate. On the 102 you have to swipe it at an angle to properly activate it. the 101 was across if I recall. Don't lose the magnet! They are spendy to replace. A temp use for a magnet is a "rare earth magnet" It works, it's about the same strength as their magnets, and usually stores that carry them have them in the small sizes. Perfect for emergency replacement. (and we have used it for that!)
This means you cannot go through strong magnetic fields with the VNS, sometimes security. Alert security with the card (wallet card or medallion) when dealing with airport or courtroom security. I don't know if you can go through security or not, but alert the guard or TSA and ASK if it is a magnetic field, then explain.
Hope that helps..
Last edited by Travis from MN; 04-09-2005 at 04:43 AM.
thank you ! this stuff is really confusing ,but from what you have told me i understand better now.i really appreciate the advice exspecaily about the security thing. I had not thought about that at all.I was already on three seizure medications that was not controling the seizures which is why this prossess is being done. It was either this or the brain surgery and i did not want to go that far. thank you again for the advice and help.
Last edited by lilac_lilly; 04-09-2005 at 05:54 PM.
My first thought was regarding the question of doing an invasive procedure with only 3-4 seizures a week. My response is YES! If seizures are allowed to continue and are not stopped completely, the disease process does progress. Over time, the seizures worsen, a greater area is involved, the mental abilities can worsen since the misfiring cells teach the healthy cells how to misfire, and quality of life suffers along with it. They have already worsened based on the post and will continue to do so until stopped. That's how it works. Mine did and my quality of life suffered so much. Why wait until your quality of life is much worse rather than fix the problem now before it does further damage that cannot be undone? I also wondered if you being treated by an Epileptologist at a Comprehensive Epilepsy Center or is this a general neuro? A general neuro does not have the training to do any treatments past giving you pills. Very true. There are docs who do have that training though. An Epileptologist will have a Certificate on the wall saying he has completed a Fellowship in Epilepsy or in Neurophysiology. Without that he is not an Epileptologist. Having the VNS implanted is not like getting a tooth filled in that just about any dentist can do it. You do need a doc very well experienced in implanting the VNS successfully to do it. The docs procedure can make a difference from what I read from another with it. I do have another friend who has the VNS, and he has not had a seizure since and takes no meds either. My Epileptologist told me that since I have Complex Partials, the VNS would not give me the degree of seizure decrease that surgery could. It made better sense to me to remove the misfiring sparkplug so to speak rather than implant a device that stops the backfire. I had a Right Anterior Temporal Lobectomy 6.5 yrs ago and do not regret it in the least! Not all people are candidates for surgery and the VNS may be best for them. You do have to do your homework and make sure you are at a Comprehensive Epilepsy Center and that the doc has done this numerous times before. The Gamma Knife is now available too, but that too takes a very well experienced neurosurgeon to do. You may want to fully discuss all of the options your Epileptologist suggests so you can make the best decision. You have homework to do. First step is making sure you are being treated by an Epileptologist at a Comprehensive Epilepsy Center that has a good track record based on the opinions of the patients who have been treated there by the same group of people. You can get your PCP to refer you to the Center of your choice once you do your homework. Phoebea
Last edited by Phoebe; 04-10-2005 at 08:07 AM.
Reason: To add a thought
wow! i didn't realize all this was so confusing. i see a regular neurologist, he is a great doctor that has my best interest in heart. he tried to send me to auggusta but i couldnt go. i cant get a job or hold one because of these seizures which makes it hard on me(i have two kids that are very young.)i am also having a hard time getting my ssi. so financally i couldn't afford to go that distance to the dr. it is a 4 hour drive to get to agusta from where i live . so i chose to stay here with my neurologist in savannah. his nurse has told me dsome of what this vns intells but it still makes me nervouse. thank you very much for all the information and for replying to my post.
Last edited by lilac_lilly; 04-10-2005 at 10:46 AM.
I had my surgery done in Augusta by Dr Joseph Smith. My Epleptologist has retired, but Dr Smith is still there. He does the Gamma Knife surgery too if your doc referred you there, I encourage you to go. Your doc now will get a report of all your visits. ando can go back to him after whatever Augusta does is done. I went 160 miles one way to see my doc in Augusta. I moved to another state after surgery and still drove to Augusta once a year. Great team there. The EMU staff are top notch too. It is up to you, but this can and does get worse and is permanent as brain cells do not regenerate. It is called Kindlng. Think of how kindling reacts whe it is placed in fire. It enlarges and the fire grows. That same principle is what happens when more and more healthy cells are subjected to the extremes of seizure activity. It is up to you. Phoebe
what you say makes alot of sense. my seizures are not getting better but they are getting worse. it is really scary for my kids and myself. I am really going to have to do some major thinking about all of my options. It all makes me dizzy, the pressure about having surgery is my biggest thing, it is either the vns or the brain surgery.considering the medications are not working.i really appreciate haveing someone to talk to that has been through this too, my family tries to understand but they dont really.if you know what i mean? the exhaustion and memory loss, and the soreness. those are some of my worst problems.It seems like by the time i recover from one seizure i have another one. anyways i am sorry that is my problem, but thank you very much for your advice and patience. and for chating back at me.i am really glad to hear you are doing better, i hope to be that way soon.
Last edited by lilac_lilly; 04-10-2005 at 05:56 PM.
The other question, what I yelled at my old doc when it sounded like he was giving up on me in the metro...
Have you tried almost all medication possiblilties and combo's?
My doc 5 years ago wanted to put me under then knife and give me the VNS. I REFUSED IT! I told him I wish to try all possible mediations and combinations that may work for me before you cut me open! I'm glad I did!
I was having about 4-12 a month on his treatment in the cities. That is high frequency for me. It was like he was giving up hope on me, and I was not going to let him do that. He did not like me for being educated and not following his lead on the surgery.
By not having the implant, I'm down to >1 a month on three drugs. it may be considered a high dose, but it's working! The sideFX are tollerable compared to some of the drugs I've been on.
Phoebe, Thanks for all the very usefull information. I have Temporal Lobe Seizures - had three in a row (grand mal) on March 13. They were the first, needless to say I am scared and have been searching everywhere for information. My Dr. as it turns out is a Neurophysiologist. I am on 3 Capsules of Dilantin - bedtime and working my way through a Lamictal starter pack. The Lamictal has helped me to be less sleepy in the afternoon and I am going back to work today. The Dr. said that I have 'Partial Seizures' and may end up taking Lamictal as my only med. I hope it works.
Thanks so much for all your very valuable postings.
i am glad to hear your medicine is working for you. i am trying to find different altrnatives, but as i said i am already maxed out on the meds now. so i am now at the only place i can be( surgery of some sort or continue as i am) it really makes me mad and frustrated! i am on topamax, trileptal,and zonegran at the max amount that i can take of each. i have lost alot of weight with the medicines too!which wasn't all bad at first,but now it is starting to worry us!anyways i appreciate the reply back and it has made me feel more comfortable with a couple of decisions i have made.
Topa and Z at the same time is RARE. Those two drugs are very similar usually it's one or the other, depending if the patient reacts to one. I had problems with Zonegran (weight loss was RAPID) that started a domino effect. My dilantin levels skyrocketed, causing me to be toxic. At first we assumed it was the Z, with it being the latest drug added. I was taken off Z, problems still existed. Turns out it caused me to lose 25% of my body weight in 6 weeks!!! The problems (drug toxicity) were fixed by cutting the Dilantin by only 50mg.
After recovering and becoming level again; a few months later I was started up on Topa, but we cross dropped Dilantin before hand; so Dilantin was halfway down by the time Topa was started up to avoid any potential problems between the two and my system (and to get me OFF Dilantin at last!).
HI again. i have lost alittle over 75lbs on the topamax and zonagran and triliptal. i also have leg cramps, really bad ones.i have had blood tests that said my potasium level was too low and i had to take potasium pills. i have hurt my left army laely during a seizure and had a cast on for a while then i had theoropy. i am still having alot of problems with the arm, now they are telling me they think it is a pinched nerve in my neck. i am just so tired of seeing drs and taking all these meds. i have to think about some alternatives . i see my neurologist friday,and i will have to give an answer about one of the sergeries.either brain surgery orthe vns. the options are slim but anything is bound to be better than uncontrolled seizures huh? thank you again for chating with me and letting me know things tha i did not know about!!
Hello. You may know this already but too much meds dan cuase seizures too. You are on the max amount, and it is not true that more is gonna be better. When I was on Tegretol and during the year before surgery, my EPileptologist pushed the dose of Tegretol up to 1,600 mg a day. I wa on this and Lamictal both. I also stayed toxic on that much teretol My vision was crossed, I couldn't think and was running into walls. I am not sure if he was playing with the dosage to see if a high dose would help before going the surgery route or if he wanted to see how that high a dose affected a person as in research. That was not a good experience and I went to MCG after that. I was still toxic when I got to MCG and too much meds can cause seizures as I mentioned. How is your quality of life on that much meds. Topamax is a heavy duty med from all I have read about it. I never took that, and I am thankful. YOu also may knot tha Complex Partials are the hardest to control with meds. I am thankful they developed other options for them since without surgery, I would have lost so much ability and that wold continue. I was afraid of the kindling. That prompted me to look into other options. The statistics I gace you re stopping seizures and AEDs was accurate, so if one med has failed to stop your seizures, you have less than a 15% chance of any of them stopping them. I know your decision is not easy but take it one step at a time. Do your research in all areas including the place and the people involved. Make sure you do make it to a Comprehensive Epilepsy Center so you can receive the best. Talk to patients who have had the same procedure as is suggested for you and who have had it done by the same team. There is another thread by tdkmom96 about her daughter's going through the same thing. I was her mentor then. In case I didn't mention it, I had surgery at age 47. Much later than it should have been. Phoebe
Are you on daily vitamins? That was suggested to me by my Neuro due to low low or close to low levels of some bodily substances. So I started staking a BID vitamin to make up for what my medications may be taking away.
Just a over the counter 2x day vitamin (AM and PM). Some stores have tailor made for (in general) for male and female. So I'd suggest those. OR a mainstream brand. Whatever you feel comfortable using. Just follow the instructions so you don't overdose on the vitamins (yes that can be done). If it's a once a day; or twice a day... whatever. That may help you.
I had low levels in a few groups; thats why he recomended I start taking a daily vitamin.
i love this site! the people and the advice is great! i have been trying to find someone to talk to for almost a year now and havent been able to. i take vitamins but they cant have any iron in them so i have to be careful because i am alergic to iron. i am concerned about taking so much medicines, i have wonderd if it could affect the heart or something like that. because i have had chest pains at times since i have been on all these medicines. i am seriously thinking about getting the vns, because to me it is the lessor of the two evils.i also have some real problems with depression, but the dr said that it is part of haveing seizures. some people have depression with seizures and some dont is what he told me. go figure huh? oh well. hope to hear from you again soon!
Last edited by lilac_lilly; 04-12-2005 at 06:04 PM.