kirk1701™ Posted May 9, 2007 Share Posted May 9, 2007 Some of you here already know and some don't. Basically, I have a disability due to epilepsy and because of that I don't drive so getting around becomes a problem when you constantly have to depend on others. After dealing with this since birth I have learned to deal with my handicap and still do anything I want, with exception to driving because that, I put more then just myself in danger, don't think I could live with myself if I had a seizure while driving and killed a mother of three with all three kids in the car I do mean anything else, I even have my own woodshop complete with a 10 inch tablesaw Today I had my three month checkup with the neurologist and he?s got something new he wants me to try. After exhausting all available seizure meds, some that worked, some that just plain knocked me the hell out or gave me headaches and I had to go off them. He told me about something called VNS Therapy and gave me some reading material. VNS stands for Vagus Nerve Stimulation which is a pacemaker size device that is surgically implanted under the skin somewhere in the chest with a wire that runs up the neck and somehow connects to the vagus nerve that leads to the brain. I know, it sounds a bit more complicated then just installing a NIC in a server now don?t it, LMAO!!!! I actually asked the doctor if this thing came from star trek J Ok, all joking aside, this device sends out some kind of frequency that shocks the part of the brain that causes the seizure and somehow knows when I?m going to have a seizure and when to shock it to prevent me from having a seizure. Now, you see why I asked him if it came right out of a star trek flick. We?ll, I asked him when we could do it and I don?t think that?s the reply he was looking for, he gave me some ligature and wants me to weight the pro?s and cons before I make a decision when I see him in 3 months. Here's some more from the web site: http://www.vnstherapy.com/epilepsy/aboutvn...vnstherapy.aspx Hell yea, I'm game for this Link to comment Share on other sites More sharing options...
lfcrule1972 Posted May 9, 2007 Share Posted May 9, 2007 Good luck if you decide to go ahead with it kirk, is it true your neighbour will be able to connect wirelessly to your brain once fitted !! ? If so you might want to re-consider Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 9, 2007 Author Share Posted May 9, 2007 Good luck if you decide to go ahead with it kirk, is it true your neighbour will be able to connect wirelessly to your brain once fitted !! ? If so you might want to re-consider LMAO lfc I do think its equiped with WEP so no neighbors probing my thoughts. However, on that subject. I do believe the neighbor has a wireless router and its wide open. still using the default admin password to access the GUI Link to comment Share on other sites More sharing options...
cathater Posted May 9, 2007 Share Posted May 9, 2007 sounds promising, how long do you have to go without an episode to get a drivers licence? Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 10, 2007 Author Share Posted May 10, 2007 sounds promising, how long do you have to go without an episode to get a drivers licence? Its different from state to state. I have lived in some that are 1 year but go figure, Kentucky is only 3 months I'd prefer to go a year seizure free before I started driving just to be sure Link to comment Share on other sites More sharing options...
Pain_Man Posted May 10, 2007 Share Posted May 10, 2007 I didn't know, but I can relate. And I certainly second crule's wish that it works out for you! I know how utterly debilitating a life-changing disease/condition can be. I've been living with one since I was 18 years old. Since I'm 36, that's half my life. I have a chronic pain condition. I've been in pain, constantly, for 18 years. I currently take enough narcotics to get the entire IB forum subcriber base stoned off their asses. (I kid you not, my daily intake is the equivalent of 60-70 Percocet per day. I also take Valium 10mg/3x a day; as well as Marinol--synthetic THC, no unfortunately, it does not replace God's herb ). As you can imagine, I'm often not in a condition to drive. I too don't want to live with having killed or injured someone because I drove when I shouldn't have (I did enough driving under the influence as a dumbassed kid to last me a lifetime; I'm not about to try God's patience after He kept me out trouble all those years go). I find myself frequently forced to rely on my wife and parents to do things most of you take for granted. Yes, I could get off my meds, but then I would be literally bed-ridden with the pain. Needless to say, because of my disability--which I admit makes me rather cranky sometimes--I've never been able to lead a normal type life. Missed college. Due to my condition I had 24 jobs in the 12 years after high school; I finally said "Fuck it" and went on disability--and what a grand fortune that is! At least I'm getting my Social Security money, which is something the vast majority of my generation will never see. I thank God I was lucky enough to have a beautiful, caring woman fall in love with me. I shudder to think of what my life would be without her--and the most amazing gift of all, my daughter. There's a not too dissimilar electrical stimulator for pain patients. But it involves threading filaments into the spinal nerves. There's no guarantee it'll work (in fact, the chances are so iffy, that you have to have a temporary unit installed; if it works they then install the permanent one ). Either way, the cost is more than $60,000; enough to make the insurance company turn blue. They'd much rather give me the opiates and send me on my way. Not that I'm terribly excited about having anyone messing about with my spinal nerves. No thanks. I can quit the meds at will. You can't unparalyze yourself the same way. Some of you here already know and some don't. Basically, I have a disability due to epilepsy and because of that I don't drive so getting around becomes a problem when you constantly have to depend on others. After dealing with this since birth I have learned to deal with my handicap and still do anything I want, with exception to driving because that, I put more then just myself in danger, don't think I could live with myself if I had a seizure while driving and killed a mother of three with all three kids in the car I do mean anything else, I even have my own woodshop complete with a 10 inch tablesaw Hell yea, I'm game for this Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 13, 2007 Author Share Posted May 13, 2007 Sorry about the delay in replying Pain_Man, I know the feeling when it comes to all the dam meds. However I'm never in any pain (Knock on wood) but now I see where your screen name comes from. Most of my problems with the meds come from the side effects which include drowsiness and for that reason I and the doctor have had to discontinue the use of many of the seizure meds. Other side effects I live with are the memory loss, but its weird I don't forget some things like "important stuff" and other things that are not so important I will. Example, the thread where I was looking for a particular movie. In a way, my memory is like RAM and needs to be refreshed to store the data #39;( so, thats probably why I don't forget important stuff like dates, bills, and appointments ect. SS Disability, WHAT A LIFE SAVER!! I'm just glad I worked half my life and put some in because I get a dam good check where as had I went on disability when I was 18 like some people I know the check is only half what I get, $500 a month and mine is over $1200 a month again, KNOCK ON WOOD!!!!!!!!!!!!!!!!!!! Driving, man I don't know where I would be right now without my parents, god has blessed me with a loving mother and father that has allowed me to live at home, drive me anywhere I need to go and pick me up which means two trips for them rather then one. I know the day is coming where I will have to rely on the CART program which is a program in our area for people with disabilities and don't drive. A little bit on what I have found out about VNS so far. I signed up over at Epilepsy Foundations web site and joined there forum which from there found a link for VNS own forum which I never expected to exist. Anyhow, so far people who have had it done are reporting the battery only lasts two years or less where it should last 8, don't know what the procedure is for replacement but I assume reopening the chest to get to the device. Also malfunctions, it should turn on for 30 seconds every 5 minutes and one guy is reporting its is coming on more often and for longer which could damagie the VNS nerve. And last but not least, it also does not fully stop the seizures in some people but just reduce the number they had without it; or the magnet that you wear on your wrist to wave over your chest and turn it on when you have a feeling of a seizure coming on will stop the seizure from occuring don't work all the time or does not always work as it should and turn on the device. More later as I have now wrote a novel and pretty busy today so will check back in a could a days. I didn't know, but I can relate. And I certainly second crule's wish that it works out for you! I know how utterly debilitating a life-changing disease/condition can be. I've been living with one since I was 18 years old. Since I'm 36, that's half my life. I have a chronic pain condition. I've been in pain, constantly, for 18 years. I currently take enough narcotics to get the entire IB forum subcriber base stoned off their asses. (I kid you not, my daily intake is the equivalent of 60-70 Percocet per day. I also take Valium 10mg/3x a day; as well as Marinol--synthetic THC, no unfortunately, it does not replace God's herb ). As you can imagine, I'm often not in a condition to drive. I too don't want to live with having killed or injured someone because I drove when I shouldn't have (I did enough driving under the influence as a dumbassed kid to last me a lifetime; I'm not about to try God's patience after He kept me out trouble all those years go). I find myself frequently forced to rely on my wife and parents to do things most of you take for granted. Yes, I could get off my meds, but then I would be literally bed-ridden with the pain. Needless to say, because of my disability--which I admit makes me rather cranky sometimes--I've never been able to lead a normal type life. Missed college. Due to my condition I had 24 jobs in the 12 years after high school; I finally said "Fuck it" and went on disability--and what a grand fortune that is! At least I'm getting my Social Security money, which is something the vast majority of my generation will never see. I thank God I was lucky enough to have a beautiful, caring woman fall in love with me. I shudder to think of what my life would be without her--and the most amazing gift of all, my daughter. There's a not too dissimilar electrical stimulator for pain patients. But it involves threading filaments into the spinal nerves. There's no guarantee it'll work (in fact, the chances are so iffy, that you have to have a temporary unit installed; if it works they then install the permanent one ). Either way, the cost is more than $60,000; enough to make the insurance company turn blue. They'd much rather give me the opiates and send me on my way. Not that I'm terribly excited about having anyone messing about with my spinal nerves. No thanks. I can quit the meds at will. You can't unparalyze yourself the same way. Some of you here already know and some don't. Basically, I have a disability due to epilepsy and because of that I don't drive so getting around becomes a problem when you constantly have to depend on others. After dealing with this since birth I have learned to deal with my handicap and still do anything I want, with exception to driving because that, I put more then just myself in danger, don't think I could live with myself if I had a seizure while driving and killed a mother of three with all three kids in the car I do mean anything else, I even have my own woodshop complete with a 10 inch tablesaw Hell yea, I'm game for this Link to comment Share on other sites More sharing options...
jack Posted May 13, 2007 Share Posted May 13, 2007 I know this is probably of no relevance to your condition Kirk, but I found it incredible when I first saw it on the news:Click here. Link to comment Share on other sites More sharing options...
lfcrule1972 Posted May 14, 2007 Share Posted May 14, 2007 Smart dog Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 14, 2007 Author Share Posted May 14, 2007 Smart dog agreed, but what happens when his life span runs out she will be left defenceless? Just hope she has a backup plan I'm lucky though I have to admit, I've only injured myself one time in my 38 years and that was just a year ago when I ignored the 30 second "feeling" or warning that I get before I have a seizure. I was on the threadmill at the time and fell while the thing was going 5 MPH, the belt did a number on my shoulder but I didn't need to go to the ER or anything, just a big ass road rash :& Smart dog Link to comment Share on other sites More sharing options...
lfcrule1972 Posted May 14, 2007 Share Posted May 14, 2007 I can see how this would be a real concern for you kirk. It strikes me that you are pretty sensible about your condition and managing it..... Link to comment Share on other sites More sharing options...
cathater Posted May 14, 2007 Share Posted May 14, 2007 My treadmill has a clip for me and a removable plug on the mill Will have to see how long it takes to stop when pulled. And I only use it to make sure I don't get my hand under the moving belt when I fall. Silly me , thought I was in boot camp and tried to run backwards. I'm not 20 anymore and my nimbleness has decreased a little bit Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 16, 2007 Author Share Posted May 16, 2007 I can see how this would be a real concern for you kirk. It strikes me that you are pretty sensible about your condition and managing it..... Thanks LFC, guess it just takes getting used to and into a routeen to managing it but once your used to doing it, its actually normal. For example, the situation with the neighbor; I could have got all bent out of shape over it and done something but that creates stress and that causes a seizure. So, I take pictures and release the stress by other means like making a joke out of it, putting up a web cam for the neighbor to see She didn't know it wasn't connected and she had no reason not to think she wasn't being plastered all over the net The medication is a bit challenging now, 4 times a day and after a while you get to "Did I take it yet"? So, remembering to take it at certain times of the day in not a problem, but to correct the "Ok was that yesterday or today" I lay out the meds in the morning for the whole day so if I take it and don't remember having taken it later I just look in the lid of the bottle to see if the medication is there. If its gone I took it Don't get me wrong now, the remembering to take it is not due to the meds, but because its one of those "Daily Routeens" that become so unoticed over time that you just don't remember if that was yesterday or today thing. Link to comment Share on other sites More sharing options...
lfcrule1972 Posted May 16, 2007 Share Posted May 16, 2007 I have trouble sometimes remembering if I took my insulin injection So I know what you mean..... Link to comment Share on other sites More sharing options...
LOCOENG Posted May 16, 2007 Share Posted May 16, 2007 I wish you all the best Kirk. I'm from the Bluegrass state as well. I haven't lived there in 30 years but most all of my family is still there. Luckily for you they actually have some pretty good doctors in that state too. Link to comment Share on other sites More sharing options...
spinningwheel Posted May 18, 2007 Share Posted May 18, 2007 Luckily for you they actually have some pretty good doctors in that state too. I agree with Loco Kirk, when they stop chasing their sisters around the bedroom they practice pretty good medicine....... Link to comment Share on other sites More sharing options...
LOCOENG Posted May 18, 2007 Share Posted May 18, 2007 Luckily for you they actually have some pretty good doctors in that state too. I agree with Loco Kirk, when they stop chasing their sisters around the bedroom they practice pretty good medicine....... No hillbilly jokes please Link to comment Share on other sites More sharing options...
spinningwheel Posted May 19, 2007 Share Posted May 19, 2007 Luckily for you they actually have some pretty good doctors in that state too. I agree with Loco Kirk, when they stop chasing their sisters around the bedroom they practice pretty good medicine....... No hillbilly jokes please My people are from the Bluegrass State also.....maybe it wasn't a joke Link to comment Share on other sites More sharing options...
Altercuno Posted May 19, 2007 Share Posted May 19, 2007 Perhaps your all related Why 'Bluegrass' State? Link to comment Share on other sites More sharing options...
blutach Posted May 19, 2007 Share Posted May 19, 2007 That's what they call Kentucky, Altercuno - The Bluegrass State (cos the grass is so green it's blue?) Regards Link to comment Share on other sites More sharing options...
spinningwheel Posted May 20, 2007 Share Posted May 20, 2007 Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 20, 2007 Author Share Posted May 20, 2007 Luckily for you they actually have some pretty good doctors in that state too. I agree with Loco Kirk, when they stop chasing their sisters around the bedroom they practice pretty good medicine....... No hillbilly jokes please My people are from the Bluegrass State also.....maybe it wasn't a joke Trust me Loco, spinner knows what he's talking about No relation to spinner tho, I'm not originally from Kenfucky; just ended up here by accident Think I've come to a decision though on the VNS and mission control is a GO!!! Someone at school I talked to has heard of it and its actually been out for quit some time, used in England with great success for 10 years but just recently approved for use in the US by the FDA. Anyhow, something the doc at school said, if I didn't at least try it I'd always be wondering "What if" and the procedure can always be reversed so if anything maybe it will reduce the number of seizures if not completely control them, then at least function on a bit more normal life Now, have to call the insurance Monday and make sure all is a go with them and the procedure is covered. Sure as hell don't want to end up with a $200,000 doctor bill. That be the case I'll just have to deal with the seizures Keep you updated. Link to comment Share on other sites More sharing options...
spinningwheel Posted May 20, 2007 Share Posted May 20, 2007 Glad to read that you decided to go for it Kirk...good luck buddy... Link to comment Share on other sites More sharing options...
lfcrule1972 Posted May 21, 2007 Share Posted May 21, 2007 Good luck kirk hopefully the insurance will cover you for this, I guess it will depend on whether they think it's cheaper for them in the long run..... Link to comment Share on other sites More sharing options...
kirk1701™ Posted May 21, 2007 Author Share Posted May 21, 2007 Good luck kirk hopefully the insurance will cover you for this, I guess it will depend on whether they think it's cheaper for them in the long run..... Yep, seems like the insurance companies run this country. Between them and the oil companies who the fcuk needs a president Really, I can't complain about my current insurance provider, last three years with Kentucky Access which is nothing more then Blue Cross. They have not failed me one time, paid everything and I have not even had a deductable...KNOCK ON WOOD!!! Shhhhhh, I'm sure they are listening Actually, I got a letter from the insurance company about three months back, scared the shit out of me at first because it takes a lawyer to understand the crap. In a nutshell they were saying they didn't pay out as much on me as I paid them for monthly premiums and this letter would help me gain insurance cheaper in the private sector. I'm like, great!! Cut my monthly premium in half, more $$$$ for burning DVD's *COUGH* i mean wood. So, I head down to the local Anthem BC&BS office and talk to the agent who hooked me up with Kentucky Access. He's like, WOW!!! I never seen a letter like this but thats what they are saying, your insurable So, we fill out a policy and submit the sucker $325 a month going to be cut to $150 I don't thinks so either so don't get my hopes up just yet. Sure enough, a week goes by and in comes a letter from Anthem, bla bla bla were sorry to inform you due to your seizures your policy was denied but thank you for choosing Anthem. Like I said before $325 ain't that bad if you take into account the meds are actually over $1,500 a month Link to comment Share on other sites More sharing options...
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