Hi! :wave: 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. :angel:

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..

--Travis

thank you ! this stuff is really confusing :confused: ,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. :angel:

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

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. :angel:

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. :dizzy: 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. :angel:

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.

--Travis

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.
Joy

:) 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) :mad: 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. :wave: :angel:

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!).

--Travis

:wave: 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? :confused: thank you again for chating with me and letting me know things tha i did not know about!! :) :angel:

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.

Best of luck.

--Travis

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! :angel:

Are you going to a comprehensive Epilepsy Center now? I not, I encourage you to go to one and let them do a VEEG before making our decision. It is unheard of to have any of the options available done if not at a Comprehensive Center. It is up to you, but it really is extremely unusual to not go to one for this. That idea scares me a lot. Have you even had a VEEG yet? That is usually the first test done to determine where the focus is which tells them what option may be best. Do a search here for the threads by tdkmom96.This site isn't my usual haunt. Phoebe

i don't go to a comprehensive Epilepsy Center. i think the closest one is Agusta,and i cant afford to travel from hinesville to agusta. i am a single mom with two kids and with out my parent help i dont know how i could take care of them. and what is a VEEG, i cant reamember if i have had it done or not. i know i have had a regular eeg done.man i am learning about alot of things i didnt know anything about.thank you, you have given me some things to think about.i am only 28yrs old and all this is really scary to me and my kids. i know that it is scary to anyone nomatter what age but i am scared regardless.thank you for the advice and patience. :angel:

A VEEG is a test that is done as an inpatient. You are there for 5-7 days approx with EEG cables attached continuously. They take you off your meds so you seize. You also are videotaped and monitored constantly for that period. This hopefully allows them to locate the focus area to determine which option is best for you. This is only one of the necessary tests that we all have who have intractible epilepsy, not controlled by AEDs. You do NOT want to have the VNS done without doing through the proper procedure. You can only have the VEEG done in an EMU, Epilepsy Monitoring Unit where there is staff specially trained for this area. Not all of the EMUs are the same, but MCG's is top notch and very safe. I am not aware of their being one in Savannah. You are really not that far from Augusta. Maybe when you are ready, you will find a way to get there. I grew up 140 miles from Augusta and not far from you. When I had my surgery there, a friend drove me the 160 miles there and picked me back up again. I was alone for the duration. It can be done, and I am much better for it. Please do read the threads by tdkmom96. Phoebe

okay i havent had that test done and it has been mentioned. they were going to do it in the hospital in savannah though!?i am going to read the threads that you have recomended to me and i really appreciate all your help phoebe. you seem like a really nice person, who cares about what happens to other people.

Lily, It really does take specially trained people, docs included, to treat you from this point on. You have tried al your neurologist can offer you unless there is an EMU closer to you with people who have a good track record of safety and success in collecting the info and reading it when they get it. Does your present doc have a certificate on his wall saying he has completed a Felowship in neurophysiology or Epilepsy? The closest facility may be Augusta, and since there are only about 100 Epleptologists in the entire US, you are fortunate to have a good one as close to you as you do. Many people come from all over to that facility. I went to a bad one first which is how I know that you cannot get the proper, safe care you need just anywhere. Maybe when you are ready, I can answer more questions. Gotta go to work. Phoebe

i have had two bad neurolgist one in mississippi and one in ohio. i have finally gotten a dr to diagnose me with epilepsy and is trying to get me on the right track (as he says). I will look on his wall when i go to the office tomarrow, i have a app. in the morning. i am just really confused and frustrated with everything right now, and it is really nice to have you to talk to about it all. my drs nurse is such a sweetheart she tries to explain everything to me to were i understand it but i forget alot of it.thats another thing i dont understand, why do i have such a bad memory and forget everything? the other drs i was seeing were not even putting me on any seizure meds., but they said that i had seizures. so i went for years without any medications for my seizures.i also wanted to let you know that my real name is candis and i use lilly as a screen name because they are one of my favorite flowers!so call me candis if you want to,or lilly whichever you feel comfortable with.thank you again for the advice,and hope to hear from you soon.

The longer seizures continue, the worse your memory can become. The area where most CPs originate from is the hippocampus. That area is highly epileptogenic meaning that for some reason the focus is many times found there. The hippocampus also contains the memory center. Both sides really are associated with memory. Mone became much worse later in my epilepsy history. That is part of that worsening process. The meds also can affect your memory. My memory after surgery is so much better than it was, but I don't have the siezures anymore nor take the meds I did. Hope this helps some. Did you know Dr King? Phoebe

i dont know a DR King. Is he or she good. my dr is really a good dr, but as i said before sometimes i feel like he is too busy to answer my questions.yes you answered my question better then anyone else has been able to.i hope that i can get something done soon to help with it all.i feel like i am on alot of medicines that are not controling my seizures and all i hear is to have some sort of surgery. i told them today to give me the video and booklets for the vns and i would check it out. i want to research it alot before i decide to do it. you know what i mean? thank you for explaining about the memory thing. does it also effect your moods too? i know it can cause migrains i have alot of those. but i have problems with mood swings, i can be p one minute then down the next. you know what i mean?thanks for the patience and understanding again. candis

lilac,
I want to tell you, my brother, 20 now, got the VNS installed at the Mayo Clinic in Minn. this was supposedly the best place to go for epilepsy related treatment (although I disagree). It seemed to help his seizures (he was having about 6 a day, more at night) when they would "turn up" the electrical impulses the stimulator sent him (they did this with a remote like piece, and it apparently caused Jimmy a lot of pain, you see, they have to start you off slowly, with small amounts of electrical impulses so your body can take it) well, he would do pretty ok -mild decrease in seizures- for about 1-2 days, but then would start to back slide.
Overall, he really hasn't seen much difference with the VNS but, after 1 year 1/2, its still in his body. This is because it apparently has a slight mood heightener (jimmys not sure this is true but might be) and appetite supressant. Plus, he dosent really need it out.
well, hope i helped.

10azty,
i wish your brother the best of luck.ias i have said befor i only have 3 or 4 a week but i am lucky from what i have read on the board. i have decided to try this kind of surgery because it is my last option. i am out of other ways to go, i wont have brain surgery. i guess you can say i am chicken.but i have too much to loose if something goes wrong,i have two small kids.i am just really lost i guess you can say. your post has helped to give me more to think about and more questions to ask the dr. thank you!!!!! :bouncing: :angel:

Well i have seen the dr again for another seizure! we have decided to give the vns a chance.This seizure lasted for 5 min. and the diastat didn't bring me out of it at first. He said that the vns might be the extra push that i need to get the meds to work for me and help me control my seizures.i hope it does becaus ei have not heard many good things about this procedure. wish me luck.

GOOD LUCK!

though it didnt really help Jimmy, I don't think the VNS is a bad idea, at all. I'm really glad i could help you out. Any other questions, you know where to find me.

hang in there!!!

Lily, It is very important to have a neurosurgeon to put the VNS in who has done this successfully MANY times before. It is usually done at a Comprehensive Epilepsy Center, and I haven't read that you are actually being treated in one. I get the impression that since you like your general neurologist that it means he will be doing the VNS. I do know that the success of the VNS does depend in large part on the skill of the one putting it in. Since you have not had a VEEG which is one of the initial tests done when considering the VNS or other options, it greatly concerns me that your doc may want to learn how to put it in. That puts you at a risk for now and in the future. It also makes him very reckless if not fully experienced in putting them in. I may be wrong but I do have concerns. I hope it works for you, but I hope more that you are in good, very skilled, success proven hands. Good luck. Phoebe

Well i have seen the dr again for another seizure! we have decided to give the vns a chance.This seizure lasted for 5 min. and the diastat didn't bring me out of it at first. He said that the vns might be the extra push that i need to get the meds to work for me and help me control my seizures.i hope it does becaus ei have not heard many good things about this procedure. wish me luck.

I really hope it works well for you!! I KNOW how scarry that can be as a mom seeing my adult child have a seizure...his have never lasted that long but still just as scarry! Let us know how it works for you!
(((HUGS)))

thank you for all the uplifting posts. i will have the sursery done next week by another dr in savannah. this one puts in the vns for my dr when he has a patient that has to have one put in. he doesnt have the best bedside manner, but seems to be compitent.i didnt think this would be done so quickly but i guess i was wrong huh?! i really am nervouse about all of this but i am more nervouse about going through another seizure like the last one.thank you again for the support.

I wish you luck, but I still am very concerned. You have had none of the usual tests we all have done prior to having the VNS or the surgery done. You do not have an EMU in Savannah. I don't remember if your doc is even an Epilepsy specialist, Epileptologist. Since this is your life and your future, you have to decide, but please know that there is a place that can offer you the specific care as well as the tests and all options under safe conditions by trained people. Liking a doc is not the reason to choose him for this type of special procedure. How many times has the doc who is to put yours in done it and done it successfully? Have you talked with those patients? All of this is part of the research you were to do before going ahead. We all did, except those whose surgery did not go well and those who had to have it redone. I am scared for you since the doc knows he doesn't have the Comprehensive Epilepsy Center, nor the EMU and he is still willing to go ahead with it. Many general neuros are just like that. Many will not refer the patient on even though it is in the patient's best interest and even though they themselves cannot provide the same safety, quality, nor results. Only if he has put in MANY VNS implants and successfully that you can prove by talking to some of these patient should he try this without the preliminary tests and under less than safe conditions in Savannah rather than Augusta. I just know that I would insist on going to Augusta for the preliminary tests to tell them exactly where the focus is so they can decide what option is best for you. Have you had any of the tests like MRI, PET, WADA, SPECT etc. My Epileptologist told me that I would have a greater percentage of seizure free success with the surgery over the VNS. Are you aware that Gamma Knife surgery is also outpatient? That doc DOES have to be well trained too. I wish you the best and hope you have done all of your homework. Phoebe

I really appreciate your concern phoebe.you sound like someone who really cares about other people.now i have a question for you. i have had an MRI done and a EEg, so i know what those are but what are PET,WADA,SPECT.?now you have lost me. i am not just haveing the sergury done because i like my dr, it is because it is the only option open to me. I DO not have the money and cannot afford to go to agusta to see a specailist. as it is my parent are taking care of me and my kids until i can get back on my feet.as i said you sound like a really incrediable person.if youcould explain those test to me i would appreciate it. thank you.

A person can't just go in and have the implant. This is not an oil change or overhaul.

Testing is required before to see **IF** the implant **MAY** help that person or not. The VNS will not help each and every epileptic. That is why testing is needed. I feel this is the reasoning for the questions being asked.

There is no cure all or reduce all in seizures. Some patients that have had the VNS found out it didn't help them. I don't mean to be a sour grape, but this is a fact. You will still need to be on medications. There is no promise your medications will be reduced.

I wish there was a magic solution but there isn't... With some it is medications. With others it could be the VNS and meds. Others it may be surgery or multiple surgical operations. It is a case by case person by person evaluation.

--Travis

Lily, In order for the doc, preferably an Epileptologist and not a general neurologist, to know what options are open for you, they have to see the test results. It's the same with other conditions when there are options, They have to see test results in order to establish a plan of care. YOu have not had the basic test to determine those options. There are docs out there who will forgo the needed tests abd set-up in order to "practice" on unknowing patients. You are not one of those now because you are aware of the needed tests etc. You choose to run with it or not. The VEEG, Video EEG done as an inpatient continuously over several days, is the first step in learning what options are open and the possible benefit of those options. Then and only then can you and your Epileptologist decide. You are at the Epileptologist stage, but you have a general neurologist level of care. As Travis said, this is not an oil change nor overhaul of your engine. What they do will be very lasting, so it is important to do it right the first time. When a person has a heart problem, they go to see a doc who specializes in that area, a Cardiologist who treats only heart problems. If that patient develops a blockage in his heart and needs surgery, the surgeon who does it will be one who does only that kind of surgery.You have a general neurologist who treats all nerve problems and not illnesses of the brain only, but you need a doc who treats only epilepsy. The surgeon needs to be one who does only surgical procedures for epilepsy. Why should you not expect the same special care received by the heart patient. I know I deserve it. Have you checked into Augusta and asked if they will take your insurance? I had an HMO, and I paid nothing at all for the entire testing process and surgery. Also, Augusta is a state funded facility, so if you qualify you can receive Financial assistance. You have to do the foot work and find out these answers, but you have to decide that you are worth the quality of care you need and take the responsibility to see that you get it. You will not find this in Savannah unless there is a complete set-up for a Comprehensive Epilepsy Center there. I am not aware of one there. All of this comes down to your choice, but the decisions you make, or not make, will stay with you for a very long time and will have an effect on your future. Personally, I am not willing to let any doc tinker with my brain who does not have the proper map that the test results will show and without the ability to read that map that the Fellowship provides him. Good luck. Phoebe.

i have checked into the specialists that my dr wanted to send me to in agusta, and they accept my insurence. but i still can not afford to go back and forth from were i live to agusta as much as they need me to. we are not poor but not middle class either, so i guess you could say we are caught in between. sometimes it is hard enough to come up eith the gas money to get to savannah,let alone go to agusta. i would love to see the specailist that i ned to see. i agree about the tests that i should have had done, and believe me when i see my dr i will bring it to his attention.thank you for the information and for explaining this to me.

Trust me, I know all too well the costs involved in this illness. There are other costs just as dear though besides money. Those costs affect the quality of life as well as one ability to function and enjoy the life you do have. Those costs do not have a price tag. I was 160 miles one way from MCG and had no one supporting me financially on a regular basis. I went for my initial visit and then back once more for the VEEG and othe tests and once more for surgery, After that it is once a year. I had intractible Epilepsy with uncontrolled seizures, and was up to 15-25 events a month. I also was toxic on my meds. I was not in the best of health, but I did not have to go to MCG more than I mentioned. I had all of usual responsibilities such as the usual expenses and insurance premiums. Sometimes, I had to go to charities or churches to get assistance and once got the money from my church to pay an insurance premium. I also had no one giving me information either since I didn't have a computer then. I was fortunate in that MCG was a safe, high quality, ethical place. I did tell a cousin the information I needed. She searched for the info and sent it to me via snail mail. There is a way to get what you need, but sometimes it takes work to get it. You grow a lot by doing your homework and caring enough about yourself to ask the tough questions. You have never mentioned, what is your diagnosis? I know it is Epilepsy. but there are many types. The name for the particular type is usually based on the type of seizures you have or the location of the focus. Please share that info with us. Maybe you did, and I forgot. I am happy that you are going to talk to your doc. No one should see a doc for a specific/specialized illness nor go into any procedure such as this without trying to learn all they can about that procedure and the background of the ones providing care. Sounds lke your doc may have tried to get you where you need to go, but he can only do so much. It is up to us to pick up the ball provided we want to. Again that matter of choice comes up. Do you have questions fo us here? Keep us posted, and I wish you well. Phoebe

i have grandmaw siezures with a secodary type of seizure that i cant remember the name of. he talks to fast for me to kep up with . but i remember the grandmaw seizure part because it is mentioned alot,they are also not controled bye the meds. i take the 600mgs of trileptal, 200mgs of topamax,and 400mgs of zonagran a day.thats not counting all my other meds for my asthma and migrains and i also have recently had sinus surgery for a cyst found in the left nasal cavity.my health has really went down hill in the last year to year and a half,i applied for a SSI and got turned down. so now i am in the process of appealling with a lawyer that only collects if i am approved. my doctor told me that i cant work,i went ahead and tried to find a job and every one i tried to find i got turn down because i am a liability.you have talked about your surgery, what kind of surgery is it? can you explain the process to me? i really want to do whats best for myself.i want to thank you again for all your patience and for replying to me.

The 'secondary' type you mentioned may be Secondarily Generalized seizures. Is that it? That is a seizure that starts in one area/side in the brain or focus, and as it progresses, becomes a generalized ( involving both sides) seizure or has tonic clonic (grand mal) activity. They stopped using the term Grand Mal a few years ago and now call those seizures Tonic Clonic. My Complex Partial seizures on occasion became secondarily generalized, but they started in that one place, in the right temporal lobe area. Much of this infromation re the types of epilepsy that do well with surgery and VNS is here if you use the Search feature. Ask your doc exactly what your diagnosis is. The surgery I had was a Right Anterior Temporal Lobectomy with Amygdalo-Hippocampectomy. You need to have the tests done to determine what option is best for you. You have to have the VEEG done in an Epilepsy Monitoring Unit at a Comprehensive Epilepsy Center. I understand all too well about the work problem. I have not lost consciousness since surgery, and that was nearly 7 years ago. For me, doing my research and learning all I could about my illness and the options out there, finding an Epileptologist to treat me, and then going ahead with the testing necessary were my first steps in taking back my life. I was also turned down for Disability too twice in fact. The last time, after surgery, they did approve me for back pay starting when I lost my last job which was at the time I started the learning process re surgery. It was not continuous however. It stopped at a date 6 months after surgery. I bought a computer with some of it, and it is the same one I have now. I had no other information, but I did have a mentor who had been through the same surgery as I was going to have to talk to before hand. Not only is it a good idea I guess to file for disabiity, it is a better idea to try and do what you can to fix the problem causing the problem and the decreased quality of life. For that, you need the next level of care. Take a list of questions to your next visit and write down the answers if you need to. make him repeat the answers if you need to or get the Nurse Practitioner to explain. The way memory is affected in Eplepsy and due to the meds too, we all have to write things down to help us remember occasionally. It also is good to take someone with you to help you remember the answers. You can always ask here and on other forums like this to see if others can explain some things you didn't understand. You di deserve answers and the proper tests for determining the right plan opf care. You doc is willing it seems to refer you and you are very fortunate in that respect. Most general neurologists will not refer on and will continue to play with the meds whe it is the patient whose life is affected. Your doc is to be commended for realizing you need care beyond what can be provided there. None of my general neuros ever admitted that, and I was the one who suffered while the illness continued to worsen over time etc. Not them. Write down the questions you want to ask your doc ( what is your diagnosis) and write down the answers as well. Do you keep a seizure journal? Start one if you don't. Before explaining the surgical process to you, take the first step and get to the people who can determine the proper plan of care for you. Phoebe

youve got a great attitude!
the doctor that put my brother's in was a total a-hole... and we all just shook our heads and were like, 'well, i guess we shouldnt expect him to be a brainsurgeon AND friendly... its gotta be too much to ask'.

as long as hes TOTALLY COMPENTENT, and your dr at home is cool, i dont see too much problem with it. just make sure the nursing staff isnt too bad. its the worst when theyre slow with pain meds, make you feel bad for asking them for things they should just outright do... and things like that.

GOOD LUCK AND PLEASE KEEP US UPDATED.

i will remember the advice about the writing stuff down and asking him to repeat the answers when i need him to. i go back to see him agian in two weeks and i will make sure to get the information i need. i like you have had bad drs too. thats how i got to this stage.i had one in mississippi,and one in ohio. but the one i have here is great and willing to do what is needed. i have hired a lawyer to help me with my apeal on the ssi that only takes 10 percent of the backpay when and if i am approved. i think you are right about the secoundary seizure, that sounds familar. and it keeps coming to the front of my mind. i will keep everyone informed on things and how they go. thank you again for the information and the patience in explaining things to me.

Hello Im new to this. Ive had VNS implanted 2 weeks ago but as new treatment for chronic depression in Dundee University teaching hosp. (Ninewells) in Scotland. At the moment I feel like hell! Is there anyone else on this board with VNS for depression? The docs. are wonderful but I could do with knowing somone else has or is going through it. Any thoughts welcome, im going to post on the depression board if there is one. Cheers, Anna. or (newtome)

i have had the vns implant done finally! wish me luck i hope it works. thank you guys for all your support. the dr who put it in was a very compotent and understanding dr. I am sore,, but they told me that ny chances that this will work for me are good. ;) lets keep our fingers crossed.

WoW that was quick!

It'll be turned off to let it heal over for a few months until they first turn it on if I recall how they had been doing it. They will do a slow ramp up with the strength and frequency of the device to see if they can find what works for you.

IF for some rare obscure reason it fails to shut off (very rare, but it has happened to some) tape the magnet to your chest, on top of the VNS, and it forces the VNS to shut off until you can get into the Dr and have them reset it.


Few tips on the magnet when you get them (they usually give you 2 fobs/wrist strap style ones last I knew). Keep them away from electronics!!! They have a very strong pull like the rare earth magnets do.

In fact the rare earth magnets work as temporary replacements if people end up losing their VNS magnets time and time again (the stock magnets are NOT cheap to replace), thats how we found the rare earth magnet working through a plastic box very well on a neighbor who had lost 5 of the VNS magnets. For $5, it was worth the investment and does no damage as long as you slowly "swipe" the as you normally would with their magnet.

If you don't get or like to use the wrist strap, buy a lens filter pouch (camera store) and the magnet fits well in there on your beltline.

The big thing is not to put the magnet by your computer equiptment or tv.

I am unsure if they hand out the medallion or if you have to buy one; but it's smart to wear that type of necklace that tells hospitals and EMS workers you have that implant as well as security at airports/courthouse. I think you should also be given a card to carry regarding the VNS to deal with security if they have questions.

Thats a few starter points. Hope it works for you. (all from my dealing with 3 people who have the VNS I have learned this!)

--Travis

thank you Travis. i have the wrist band magnet and the pager style magnet. they cost $30 to replace if you lose them. not cheap at all. the dr put a rush on my surgery for some reason, because that was my origonal thoughts,too.i was like, wow that was quick. but his nurse called me and explained that he wanted to get it done because of the frequency of my seizures and the fact that they are uncontrolled. they are turning it on in two weeks :confused: . they said i only needed a two week healing process before it got turned on. i only hope it all turns out okay and works.were would i find earth magnets? i have thought about that, i dont want to sound dumb but i dont get out of the house much and i really dont know.thank you for all your information.

I don't what type of store would carry it normally. Science related I would gather. Nature stores that may sell polished rocks MIGHT carry them.

HOWEVER this is only in an emergency. I don't think the mfgr of the VNS likes to hear a $5 magnet works just as well and feels this type of magnet has the same strength pull as the magnets that SHOULD be used that they supply to the patient.

The store I can find them at is a hodge podge surplus store that sells about everything you can think of. Motors, pumps, wiring, textiles, plastic canvas and other craft supply at times. Mainly industry supply and military surplus is what this store sells. Good place to obtain your needs for science projects, or other odd electrical supplies.

--Travis

:) i can imagine they wouldnt be happy to hear it either. i just wanted to know in case of an emergency, i dont think i will lose them,but i do have two very hyper young kids(a 3 yr old and a 6 yr old) and accidents do happen. i keep them put up, but for some unknown reason my kids seem to be attracted to them. the higher i put them the more they are attracted to them. plus with my luck i am liable to put them down somewhere and forget where i put one of them, then forget where i put the spare. but i have just been hit with inspiration, i will give one to my mom to hold onto.so i dont lose that one. :bouncing: thank you for telling me as much as you have you have been a great person to tell me what you have. thank you again :D

:wave: they have turned the vns on. it is uncomfortable, but i think i can handle it. i feel like i am choking sometimes and it makes me cough. when i go back again they said they might turn the pulses down so it would be more comfortable. i hope this works for me, it would be nice to have something go right for once. i hope everyone is doing great with their epilepsy, and i am praying for you. :angel:

:eek: this chokeing sensation is driving me crazy. i thought i could handle it but it is actually effecting my appatite. has anyone ever hear of that happening? i guess i am afraid of choking on my food or something, i dont know. i go back to the dr tuesday. well if anyone can tell me if this is common, please do. thank you. :)

try doing a ****** for VNS and epilepsy or along those lines and see if there are any other places that talk about it online.

--Travis

lillac lilly,
When my son had his VNS we bought replacement magnets at the local hardware store. My husband had some way of testing the strength. They were exactly the same size as the ones we got from Cyberonics (approx 3/8 ' x 1' x 2') but did not have the plastic coating. They came in a package of two and I believe I paid 2 or 3 dollars per pack. We had them stashed everywhere, including one hanging from his backpack. Unfortunately the VNS did not work for him and we had it removed before he had brain surgery. Almost a year now and no seizures. For a lot of people the VNS is very successful. I hope this is true for you.

As for the chocking, my guess is that it is programmed too high. My son's doctor started out very slowly. Every appointment she would adjust it and then send us out for a long lunch. An hour or two later we would be back for a recheck before going home. There was never a problem with my son's. I could tell when it was actived as his voice would get scratchy, but he would talk right through it. At times he would tell me it wasn't working at all anymore. That was how comfortable it was. But, as I said before, the doctor started out very slowly and adjusted it frequently.

i am sorry to hear the vns didnt work for your son, but glad that the other surgery did. sorry i didnt reply sooner, i havent been feeling too good lately. they started off a little higher than usual on me,for some reason. i am going to be talking to them about the choking sensation when i go to the dr tomorrow. it is really bothering me. it doent seem to be helping me much yet at this point, but the dr told me not to exspect to much yet. thank you for all the information about the magnets, its been alot of fun trying to teach my 6yr old how to use the magnet to bring me out of the seizure, or help lessen the seizures intensity.thank you for all the info and for repling :wave:

We were told that it might take 18 months before the VNS would be fully effective.

So, just be patient . . . and keep the good thoughts. :wave:

Lily, I wish you good luck with the VNS. I hope they told you that the purpose of the magnet is to prevent you from having a seizure. That's what it was invented for and its major purpose. It isn't just to bring you out of one. You are to use the magnet in case you feel you are going to have a seizure to stop that activity before it goes further by activating the VNS with the magnet. Phoebe

:angel: the drs told me that same thing about it taking up to 18 months to work. they have started to up the device every two weeks and it feels like everytime i get used to it i get it changed. but i think after the next isit i iwll have a break and i wont have to go back for 3 months. i have my fingers crossed. you have been so nice, and i will try to be patient. it is just really hard after all this time. i wish you guys the best...

phoebe its has been a long time sense you have posted to me. i hope you are doing well, yes they have explained the magnets to me and my whole family it is just that my daughter is having a little hard time remembering how to use it and when to use them. of course my 3 yr old thinks it is a toy so i have to keep thm put up to were he cant find them. i use the magnet before going to bed every night considering that is when i have most of my seizures, thats what the nurse has told me to do. adn if i feel one coming on during the day i also use it. so far it seems to lessen the severity of the seizures but i still have the same amount of them.the dr and i are hopeful for the device to work better after it is turned up more. i really do hope this finds you in good health and spirits. :wave:

:wave: sorry i havent been on anytime lately, but my computer broke down. so far the vns is helping to lessen the severity of the seizures, but that is about it. we are hoping that after it gets upped some more it will help control more. i hope everyone is doing good. and haveing a great summer.

let me start of by saying that yes the vns had lessen the severity of the seizures, but no it hasnt helped to lessen the ammount that i have had. i am currently haveing other problems. i am keeping constantly haveing migrains and at leat 1 to 2 seizure every day to 2 days and i think it has something to do with these migrains.i have even went to the hospital because of the pain level from these migrains.i feel like i cant stand for my head to be on my shoulders and i am even haveing nosebleeds. so i called the nuero and made myself an app. for friday, and talked to the nurse she said that she was concerned. they wanted me to come in tomorrow but my daughter had an important appointment i couldnt cancel so i had to wait till fri. i will keep you posted on how it goes. :angel:

[QUOTE=Phoebe]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[/QUOTE

[QUOTE=Phoebe]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[/QUOTE

[QUOTE=Phoebe]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[/QUOTE


Could you please tell me what doctor and Comprehensive Clinic you go to? My son is interested in the VNS, but the clinic he goes to has not done many of the implants and we are nervous about this. They tell me he is a candidate for one. I read too many negative issues with having the implant. It sounds as though your clinic has a good success rate.

I have a vagus nerve stimulator and it works so if you feel that will will help you then get one rather than than have more seizure and break bones and really hurt myself like i used to. I was scared at first too but then i saw how good it worked. Call the people at VNS and talk them or talk to them online and let them send you some info . I would rather have my vagus nerve stimulator than more seizures anytime.