Medical Forum / Diseases and Disorders / Epilepsy / May 2004
VNS-Anyone have one in U.S.
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Dawn Compton - 16 May 2004 07:01 GMT My neurologist is considering having me undergo the surgery and get this. Could anyone give me some major details of the process and of what it is like afterwards? I am really curious and would be grateful for the information.
Dave ???? - 16 May 2004 16:47 GMT Howdy Dawn!
I've got it!
See my site:
The VNS From A Patient's Point Of View http://www.howdydave.com/vns.html
 Signature Dave ???? "Noli illigitemi carborundum decendus" "Ego sum quis ego sum quod ut est quicumque ego sum"
http://www.howdydave.com
> My neurologist is considering having me undergo the surgery and get > this. Could anyone give me some major details of the process and of > what it is like afterwards? I am really curious and would be grateful > for the information. ---------------------------------------------------------------------------- ----
E_Caldwell - 17 May 2004 19:25 GMT I've had a VNS for almost 3 years and am extremely happy with it. It has nearly eliminated my seizures and I've been able to cut my medication by 2/3.
Before VNS I was having about 12 complex partials/day; now I have 1 every 3 months or so.
The surgery was a non-event. I went in about 2 PM, the surgery was at 3 and I was home by 7. I didn't need any heavy duty pain medication, but took 2 Motrin before I went to bed. I had it done in August, so the incisions and dressings were uncomfortable in the heat but as soon as the heat wave passed, that wasn't a problem. I have a scar on my neck that's not particularly visible and one on my chest. A neurosurgeon did the surgery--I "interviewed" 2 neurosurgeons before I chose this one--he had extensive experience both with the VNS (he participated in the clinical trials) and implanting other neurological devices, so I felt very confident with him.
In the beginning my neurologist checked and adjusted it fairly often (every month). Now we've found settings that suit me, so he checks it every 6 months and he says I probably won't need to have it replaced for another 2-3 years. It doesn't affect anything I do and I'm very active--swim regularly, take an exercise class, work in the yard, etc.
I would much rather have a hunk of metal in me than be taking medications that affect my cognition, liver and kidneys.
I did a lot of research before I decided to do this--I had done this and gone to an appointment with my neurologist meaning to suggest when he brought it up, so it was what I like to think of as a mutual suggestion (we frequently do this!). My Cyberonics rep was a very bright, responsive person and was able to answer the few questions I hadn't been able to figure out on my own.
Good luck.
>> My neurologist is considering having me undergo the surgery and get >> this. Could anyone give me some major details of the process and of [quoted text clipped - 3 lines] >---------------------------------------------------------------------------- >---- Daz_n_Pat - 17 May 2004 22:42 GMT > I've had a VNS for almost 3 years and am extremely happy with it. It has > nearly eliminated my seizures and I've been able to cut my medication by 2/3. [quoted text clipped - 28 lines] > > Good luck. That is so good to hear. I'm having a similar amount of complex partials each day and I've been considering the VNS - it's my last hope of acheiving some kind of control. Surgery 3 years ago didn't help. Yesterday I got an email from the hospital asking how I was doing and when I replied saying that I wasn't doing too well they sent back an email suggesting I come in to talk about further surgery. Bugger that. The risk of side effects increases as they take out more of the brain, so I think I'll hang on to what I still have left. I'm becoming more and more convinced that the VNS is the way to go for me. Nothing else has worked.
Darryl. --
------------------------------------------- To email, change daryl to darryl in address. -------------------------------------------
gaross - 16 May 2004 16:52 GMT From what I've read (here) it's not the Answer for the World, and Dave might have some comments since someone said he had his Unhooked? His main Website included information, you can find at end of his 97 current posts up on the group. Or go to http://www.howdydave.com/ Scroll down to "The Biggies" title box, and under that Click on Vagus Nerve Stimulator in the Red Title Box. I think (I told you before)it's a Fairly invasive operation and you have to go back each 18? months to get the battery etc. checked or replaced. Those are the things that Dave could give you direct experience on if there's not enough on the site. Have you Really run through the range to Pills you could use for Your type of seizures? My impression when I gave you this address Last Autumn? was the Dr. seemed to be a Specialist in Surgery and not necessarily at "Arm's Length" with respect to unbiased opinions. Like asking a Ford Dealer which Car you should buy next....
Maybe some of the others with **Experience with a VNS could give you further information. (I think you're still posting onto the Newsgroup in HTML and should use Plain Text as some readers can't properly handle that text mode you use. Likely if they get an error message like I got at start of this reply, they would click to Discard rather than continue with their comments.) G./
> My neurologist is considering having me undergo the surgery and get > this. Could anyone give me some major details of the process and of > what it is like afterwards? I am really curious and would be grateful > for the information. ---------------------------------------------------------------------------- ----
AmandaM - 17 May 2004 14:27 GMT I was shocked to see this post. My doc just mentioned the VNS to me the other night and I came on to post about the topic only to find yours Dawn. I have been through a number of meds. and continue to have multiple seizures per month.
I attempted to read Dave's site but was unable to connect with the link. Any help?? I can be computer illiterate at times!
Thanks in advance.
Amanda
gaross - 17 May 2004 14:36 GMT If you still have Dave's post up from the Group, put the Mouse arrow over the coloured www address at the End of his post, and Double Click on it. That should take you direct to his site. G./
> I was shocked to see this post. My doc just mentioned the VNS to me > the other night and I came on to post about the topic only to find [quoted text clipped - 7 lines] > > Amanda AmandaM - 18 May 2004 02:30 GMT Thanks. I did that (I can do basic computer stuff) but it didn't work for me.
gaross - 18 May 2004 02:59 GMT > Thanks. I did that (I can do basic computer stuff) but it didn't work for me. G. -> Try see if you can link via here (I just cut / pasted his earlier post to here). I don't know if you have to key the search in direct under Google to search his site, separate from this group. If you have to, and jot down the http stuff below, google should find the Website under the search option if you give it the stuff below. (Usually on windows, the http address is already coloured so you can link to sites by double-clicking on them, even on posts like this.) This is the address (buried in the text) of his website -->
Howdy Dawn! I've got it! See my site: The VNS From A Patient's Point Of View http://www.howdydave.com/vns.html -- Dave ???? "Noli illigitemi carborundum decendus" "Ego sum quis ego sum quod ut est quicumque ego sum"
http://www.howdydave.com
> My neurologist is considering having me undergo the surgery and get > this. Could anyone give me some major details of the process and of > what it is like afterwards? I am really curious and would be grateful > for the information. Dawn Compton - 22 May 2004 05:43 GMT Amanda wrote:
>I was shocked to see this post. My doc just >mentioned the VNS to me the other night and I >came on to post about the topic only to find >yours Dawn. I have been through a number of >meds. and continue to have multiple seizures >per month. This is kind-of strange. I have only been through two meds with numerous dosage changes, but they have had little to no effect.
>I attempted to read Dave's site but was unable >to connect with the link. Any help?? I can be >computer illiterate at times! I can not link to it either. I never have been able to, but Gaross keeps saying it is up. I am getting this very doubtful feeling though.
Dawn Compton - 22 May 2004 05:40 GMT >Have you Really run through the range to Pills >you could use for Your type of seizures? My [quoted text clipped - 4 lines] >opinions. Like asking a Ford Dealer which >Car you should buy next.... No, I have being seeing a neurologist, a specialist in seizures. I have been through too many dosage changes in both Dilantin and Keppra and neither have had any positive effect. I even think the Keppra may have made me worse. I have just been told if the results from my latest tests come back anywhere near as bad as the rest (most likely chance), he really wants me to do the surgery. I am willing to have it done if it will help me.
AmandaM - 22 May 2004 14:25 GMT Hi Dawn, I know how you feel. I am still going through an increase in keppra and recently finished my decreases in dilantin. So I am officially off of dilantin (for the time being anyway). I am still on lamictal too.
Everytime I increase the keppra I have another complex partial. During my partials I sleepwalk and eventualy fall in some random place of my home. I usually wake up in a small grandmal with many bruises from the fall. My neuro. insists that the seizures on increase days are purely coincidence but I am not sure I agree.
My memory is gone and I am very irritable. I find myself having to apologize to everyone due to my moods. I am so tired when I increaes that I cannot leave my home... often staying in bed most of the day.
Dawn I too think that the Keppra is making me worse... not just in seizures but overall functioning. I am so happy to know that I am not the only one feeling this way.
Amanda
Dona - 22 May 2004 16:05 GMT Amanda and Dawn,
Have you looked into Topamax or Zonegran? They're supposed to be a newer class of antiseizure meds.
http://www.topamax.com/
http://www.rxlist.com/cgi/generic3/zonisamide.htm
AmandaM - 23 May 2004 02:06 GMT Thanks Dona! I will do some research on those.
Dawn Compton - 23 May 2004 03:19 GMT >Have you looked into Topamax or Zonegran? >They're supposed to be a newer class of >antiseizure meds. I actually haven't, but I am going to go through with the surgery if my neurologist decides to. Like I said, he is about 95% sure on the surgery.
Dawn Compton - 23 May 2004 03:28 GMT Dona, I looked at both drug sites you had listed. The first drug would not cover most of my seizures-just one of my four or so types. The second drug I would not be able to take since an active ingredient is Sulfur. I am allergic to this.
Dawn Compton - 23 May 2004 03:17 GMT Amanda wrote:
>Everytime I increase the keppra I have >another complex partial. Since starting the Keppra, I have had two simple partials and one complex partial. I also have had an increase in the absence seizures.
>My memory is gone and I am very irritable. I >find myself having to apologize to everyone >due to my moods. I am so tired when I >increaes that I cannot leave my home... often >staying in bed most of the day. I also have a major problem with memory and concentrating. I am probably somewhat irritable and have had some mood swings. I also find myself to be more tired. This is strange we have a lot of the same side effects. Once when my neuro tried to increase the Keppra, I suffered from severe dizziness and extreme blurred vision. He had to decrease it to the original dosage.
>Dawn I too think that the Keppra is making me >worse... not just in seizures but overall >functioning. I am so happy to know that I am >not the only one feeling this way. I was too glad to find someone to agree with me. Most people around here treat Keppra as if it is the best thing and all I have had is bad results.
Raistlin - 23 May 2004 08:08 GMT huh,not everybody treats keppra as the best thing.
had my sixth grand mal while taking keppra (that is about for weeks) today. 5-20 absences per day. simple partials every two days. drop attacks nearly every day (and these i didn't have without keppra). i don't think it was that bad without the keppra. i'm sure of it. well yeah. i'm just starting on it. but seeing others in the same dilemma isn't very encouraging. anyway, i've decided to get off keppra.
Raist
gaross - 23 May 2004 15:31 GMT > huh,not everybody treats keppra as the best thing. > > had my sixth grand mal while taking keppra (that is about for weeks) today.
> 5-20 absences per day. simple partials every two days. drop attacks nearly > every day (and these i didn't have without keppra). [quoted text clipped - 3 lines] > anyway, i've decided to get off keppra. > Raist Probably wise, selecting Medications by Digital Lottery. We gave no? idea necessarily if the types of Med. they're posting about is the Same as yours (whether it's called Keppra or not where they live), or how their circumstances and seizure types might be different from Yours--- but use *Their experiences to pick a pill.
Lots of us are allergic to Chocolate or Don't eat meat. I guess Bang goes barbecues this summer and no Milkshakes except Strawberry and Vanilla. Oh, some are sure that MSG caused their seizures too.
I use different medications for different seizure type than Grand Mals, but we were on my pills for range of 4-8 weeks before we even did Bloodwork to see if I was at therapeutic levels for my weight. I can't tell from First sentence above, if the Grand Mal was *4 weeks ago? or you had the Grand Mal AFTER Being on the Keppra for 4 weeks. The difference of which it was before a seizure started matters. If you weren't Using Keppra 4 weeks ago, when you had the szr. you can't blame the med. for the szr. If you had got to Therapeutic levels and had bloodwork? (if that's how they measure it) to confirm that, then any more szrs. might need a second (added) pill with the one you currently use. (I use 2 for Complex Partial type szrs.) I was told in 1993 to 'hope for 2-3 seizures a month' based on MRIs and EEGs. Last 2 seizures I had were Dec. 97 and June 1998 --> 6 years next month. Some of the medications take longer to get to a stable blood level than others, Some of the older types used to get the their final level quickly, but would also 'drop off' quickly (under 8-10 hours) too. Newer ones are designed to be taken 1 or 2x a day and keep levels stable all day long. But it takes longer to get to the level that might work for you, or a combination of pills that will work. Because 3 people post about Medication XXX is only Qualitatively comparable -- did they have sleepless nights, did they get headaches, did they (like you) not get seizure control for Grand Mals. But 2 other people who might post that They happened to also Hate it, without elaborating so you can see if they're even having the same szr. type as you, doesn't give any scientific basis to discard a pill. That should be done with the treating Doctor. If you stop some pills without them, *they are not responsible for any reactions you have. /G.
Raistlin - 23 May 2004 16:15 GMT hey gordon,
know why i like you? 'cos you get me back down to earth :-)
right. again, i didn't chose my words well. i'm taking keppra for four weeks. in this time i had six grans. one of them today. additionally the number of my partials increased and i started to have drop attacks. this *is* a bit odd, isn't it? because i don't remember anything i did to provoke all the stuff.
my life is more regular, that it has ever been.
wanna know my state of mind? i'm really, really freaking. i lose control. feel like the watcher of a play.
it may be coincidence. but i'm having more seizures than ever.
i never meant that keppra is a bad thing. but i'm having the impression, it is no good for *me*.
right, i don't say there cannot be another reason for this change. but i want to have it checked - to see, if *is* the keppra or something else.
i'm not going to do anything without talking to the doc. well, i can't reach my neuro for the next two weeks, 'cos she's on vacation. so i'm going to talk to the family doc tomorrow. even though you say it may take a longer time, before one can tell if the keppra is working. what should i do? freak on? man, i'm doing my best to handle it. but havn't been myself lately. right, at first i thought it's all about "not getting along with the situation". but it's not that - just believe me in that.
thanks for talking straight Raist
gaross - 23 May 2004 18:08 GMT > hey gordon, > know why i like you? 'cos you get me back down to earth :-) [quoted text clipped - 11 lines] > > it may be coincidence. but i'm having more seizures than ever. ** Several of the seizure types (at least my Complex Partial and Simple partial types, I only knew how severe they were or if I was still having them by others around me witnessing them, OR if I woke up on the Floor. I couldn't tell from your earlier note if others had seen you still having (absences?) or that you were having Drop Attacks still. Usually we're not aware of absences if we're having them, unless someone sees us and tells us about it, or if we do strange things that don't make sense (like forgetting that water was put on to boil and we hadn't noticed when the pot was dry and empty from overheating). Those you're having should be checked (as you said), even if it's by another Doctor at the clinic while your Dr. is away. I haven't used Keppra, but others 'around here' have. So I don't know if it's one that can be Improved by combining it with a second pill to give benefits of both working together. Also some of the Anti Ep. Meds shouldn't be stopped promptly or levels changed w.o. the Dr. being involved. Impression I had on the earlier post was you might be tempted to 'self medicate'? even though *You know your seizures better than I or your Doctor, some of the pills do strange things with only a 50% drop in blood levels OR a 50% increase above what was your own therapeutic levels. That was the context of my about stuff like you paragraph below. It might Not be good for you, OR with another (2nd) med, the 2 might give you a better balance where one of the pills takes up the slack on the seizures you're still having, while the Keppra might be already controlling some of the ones you used to have. Those sorts of things (you probably know) can sometimes be checked by comparing e.g. EEGs from before, where you're at Now, and where they (*you) Want to be. We often get Auras or Simple Partials as we get close to full control of C.P. or G.M.? seizures, and unless those become more extreme or are troublesome (like Drop Attacks or some of the Quick Onset types I had in 1995 and 96), it's hard for us to know what's going on 'upstairs'. Low blood sugar, Grapefruit juice (with my Tegretol), and other things can mess up levels and control and almost look like they've struck because a pill isn't working. (Actually with Tegretol and Grapefruit, it does Stop working, but I never related some of my seizures at 4 PM with the Morning Juice I used with my Pills. It was only after I had stopped using anything with Grapefruit, that I found that it and Tegretol don't get along. That was just one example of what I was trying to describe.) But some of those things that can conflict might get help (for you) from your Pharmacist, the http://efa.org medications site if you haven't looked at it to see if there's something of use to your situation, OR getting a Doctor re-involved if you're still not happy with the control levels. (I could often get to see my Pharmacist easier to look up side effects and get a printout on a pill I used, faster than seeing the Dr. or getting a call back from him. I also wasn't online at the time, so my treatment was between me, the Pharmacy and the Doctor at that time.) /G.
> i never meant that keppra is a bad thing. but i'm having the impression, > it is no good for *me*. [quoted text clipped - 13 lines] > thanks for talking straight > Raist *** It's O.K. I wasn't trying to sound too 'brusque' but we've had a few people using e.g. Tegretol who planned or had Stopped it because they had upset stomachs or headaches they blamed on the pill. Since Tegretol is one of the pills that comes with a warning to not Stop it abruptly, or reduce the dose w.o. speaking to the Dr. I was concerned that something like that might be the case with the Keppra, and if you intended to stop taking it since it wasn't working. Then restarting it might be more difficult or take longer to get to optimum blood levels if it had been stopping (e.g.) 70% of the seizures you would have had, versus if you were Not taking Keppra. G./
Raistlin - 24 May 2004 23:10 GMT hey gaross
> Several of the seizure types (at least my Complex Partial > and Simple partial types, I only knew how severe they
> were or if I was still having them by others around me > witnessing them, OR if I woke up on the Floor. **or both, in my case. the simple partials are worst. you know exactly what is going on, but you can't do nothing about it. while my simple partials either i can't use my right arm or i have no speech. i hate wanting to say something and then notice, that your mouth isn't working.
> I couldn't tell from your earlier note if others had seen > you still having (absences?) or that you were having
> Drop Attacks still. > Usually we're not aware of absences if we're having them, > unless someone sees us and tells us about it, or if we do > strange things that don't make sense (like forgetting
> that water was put on to boil and we hadn't noticed > when the pot was dry and empty from overheating ** i set my kitchen on fire. guess that will do ... people keep telling me 'bout the absences all the time. i also think that sometimes the is a way to be aware of them - afterwards. or if you are having several after each other. the lights aren't dimmed that much then, i think. though it takes quite a long time to get clear again, when these situations happen.
> It's O.K. I wasn't trying to sound too 'brusque' **i like brusque people.
right i may sound irrational most of the time, but just believe me, i'm not. i'm aware, that it would be a stupid thing to stop a drug like keppra without talking to the doc (who would *probably* tell you to take it for another two weeks to see if the side effects wear off ... as i was told. if you ask me , they looked just helpless and wanted me to wait for *my* doc.). when i'm talking about stopping a medication, be sure - i mean doing it with the doc. we'll obviously have to test another combination than the one i'm taking. i don't blame the drug - i blame its not working with my body. well, i think two weeks won't be that long.
Raist
gaross - 22 May 2004 16:11 GMT I thought I had Cut and Pasted a Large GRAPHIC of the FRONT PAGE from Dave's site, with Opening of Detail about the VNS, into a message, but it's Either off in Cyberspace to return sometime, or lost. (It would have been ~40k or more long anyway with the Pictures and graphics.)
My failed message opened with these two links that I said I had ***Just Retested and **GOT TO** on Windows XP without incident. They opened in under half a second. (The Large one I tried to send here, had pictures and graphics and might have exceeded the servers size limits somewhere.)
Dave's Main site entrance is at http://www.howdydave.com Down LEFT is a RED button by Vagus Never Stimulator, Click on that and it goes direct to information specific on the VNS.
A DIRECT LINK to the same information (without his general site above, useful for bookmarking), is at http://www.howdydave.com/vns.html . G.
BOTH THOSE worked for me at 11 AM Eastern.
WRT> Bottom, Dilantin is usually given first, since it works for many and is cheap, since it was developed in 1930s or earlier-- I haven't used Keppra. There are likely about 30 medications, depending on szr. type, that's why my earlier post suggested if you've only used *2, it seemed a little Quick to head off to a VNS as a Solution.
See Dave's Comments on his experiences, plus what's involved with getting this thing Installed. It's not a Minor operation, and depending where you are Check the Costs if you don't have insurance that would cover those. /G.
gaross wrote:
>Have you Really run through the range to Pills >you could use for Your type of seizures? My [quoted text clipped - 4 lines] >opinions. Like asking a Ford Dealer which >Car you should buy next.... No, I have being seeing a neurologist, a specialist in seizures. I have been through too many dosage changes in both Dilantin and Keppra and neither have had any positive effect. I even think the Keppra may have made me worse. I have just been told if the results from my latest tests come back anywhere near as bad as the rest (most likely chance), he really wants me to do the surgery. I am willing to have it done if it will help me.
gaross - 22 May 2004 16:17 GMT Well I guess it takes longer for *270KB !!! to get posted than a 3kb Post. Anyone know how to get a post to Expire sooner than the 2-3 days some of these on My readers seem to take?? :-< I didn't really want that amount of Bandwidth used up, if it impacts no. of messages or ?? that can post on the group. I DID remove a BUNCH of stuff from the Intro part, and only intended to leave the Costs U.S. and Howdy Picture, plus the VNS picture and show how it's Installed. It's NOT a minor operation like some of the older posters seemed to think. G./
"gaross" <> wrote in message
> I thought I had Cut and Pasted a Large GRAPHIC of the FRONT PAGE from > Dave's site, with Opening of Detail about the VNS, into a message, but [quoted text clipped - 37 lines] > he really wants me to do the surgery. I am willing to have it done if > it will help me. Dawn Compton - 23 May 2004 03:33 GMT Gaross, I keep trying to get to the site. It will allow me to his home page, but if I hit the VNS link, it just takes me to a dark page and stops loading. Something is WRONG with the site.
gaross - 23 May 2004 04:01 GMT > Gaross, I keep trying to get to the site. It will allow me to his home > page, but if I hit the VNS link, it just takes me to a dark page and > stops loading. Something is WRONG with the site. If you have messages set to sort by message thread (diagram like a horizontal bar graph on sort options), messages from all responders, with same title are sorted in order, under that title. I accidentally downloaded a Large *270KB part of his site earlier at 1051AM today ONTO This group threads. (This is going out about 11PM Eastern for time comparison if you can look back up to my message earlier.) Because some of the content is so large (and html?), is there any chance you might have set your Maximum Group post size to a smaller amount? After a couple of you posted that you couldn't find the link, after I posted the http stuff, I went back, Clicked onto it ok, and did a Cut and Paste of most of the information to Here (the group). I tried to remove a Large part of the content (for copyright and brevity), but tried to leave his Photo
:-> , and what I downloaded earlier was 270KB in size. (If you don't have that post or didn't see it earlier, in full, you might have an Upper Buffer size set too small for some of the Graphics or text.
I thought it was quite a Nice site and had lots of useful information that some of you appeared to need (from content of earlier posts). That's why I went to make sure it wasn't Offline, then I clicked into the site and looked down several of the tabs to make sure it'd open properly before I came back and posted that I had found it, and it was in OK Shape to get to. That's the limit of my Geekdom, unless Bob (sps) or Howdy have any ideas (he might be on the road -- this weekend is a Holiday through Monday night in Canada, and he travels in the U.S. and Canada (Moving Target!! ) /G.
David Ruether - 23 May 2004 15:56 GMT > Gaross, I keep trying to get to the site. It will allow me to his home > page, but if I hit the VNS link, it just takes me to a dark page and > stops loading. Something is WRONG with the site. This site is VERY slow-loading, even on a DSL line - that may be part of the problem. Try starting it, then going away for a while while it loads in the background and see if it eventually comes up for you. It is well worth looking at...
-- DR
gaross - 25 May 2004 01:15 GMT > > Gaross, I keep trying to get to the site. It will allow me to his home > > page, but if I hit the VNS link, it just takes me to a dark page and [quoted text clipped - 5 lines] > for you. It is well worth looking at... > -- DR I hadn't thought of that, too. I couldn't understand why several said they couldn't get it, when I'd click to it and it would load in under 2 seconds or so. I guess that's an advert. for Cable. I've never had any delays 'here'. I've only ever seen delays on one of the UK Astronomy Groups where they load their Star Photos. (I expect the 3-4 seconds per screen are the Sender ISP speeds offloading the pictures.) Especially after poster no. 2? or 3 that said *they couldn't get it, and I went back (to see if it was down for Maintenance or ??) and Up it came -- with his Photo, and VNS models etc. all together, just like always. G./
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