vns probably in my future

[arnie]

Well, I talked with my neuro today and he said that I would probably be a good candidate for vns. 30-plus years of seizures (I would say I have had at least 7500 simple partials in all that time, and possibly as many as 10,000. I have no idea how many subclinical seizures I have had but it might be 75,000 to 100,000). They have been very poorly controlled with the 5 different meds that we have tried, and apparently there is not a very good chance of finding one exact spot to excise that would take care of everything. I'm going to get one more MRI just to see if there is anything drastic going on in my brain, since it's more difficult to have an MRI after the vns placement. My wife feels good about the treatment option, too. She has been seeing an increase in the severity of my szs and a worsening of my memory.
SO . . . my neuro said he will set the wheels in motion for the surgery. I have read up on it quite a bit, and I am pretty sure I'm going to go for it. Any thoughts from y'all? Especially from those of you who have had personal experience with it. Onward!

 

[Bernard]

Have you tried anything besides medications? Diet (LGIT, MAD, etc), EEG neurofeedback, CBT techniques as described in Epilepsy - A new approach, etc.? See the proactive prescription link in my signature for more ideas.

 

[arnie]

In 30+ years of keeping track of my szs I have never found anything that seems to be a precipitating event. Not caffeine or alcohol or stress or the phases of the moon or how much I sleep or level of physical activity or what I eat (which is generally a pretty natural, whole-foods type diet). The 5 meds I've been on have controlled the TCs but not the subclinicals or simple partials. I'm not a big believer in many of the "alternative" therapies, most of which don't have a lot of valid research or well-controlled, large-scale, studies to back them up. Lots of anecdotal evidence, which really doesn't mean much.
I don't think VNS will be a magic bullet, but in researching it and discussing it with my neurologist and my wife I have decided to give it a go.
From reading what you have written about VNS it's clear that you don't see much of anything good about it, and you obviously are not able to be objective about it's efficacy. I find it really strange that you rate aromatherapy higher on your alternative therapy chart than VNS.
Anyway, that's where I am, and it's pretty clear where you are. I will not get into a discussion with you about the merits of the various therapies, since I don't think we would be able to reach any sort of common ground and I don't want this thread to be turned into an argument.
I do appreciate this forum and I'm glad it is here. I will keep you all posted on how things go for me.

 

[Bernard]

...
From reading what you have written about VNS it's clear that you don't see much of anything good about it, and you obviously are not able to be objective about it's efficacy. ...

Whoa. I've been very fair in explaining my thoughts on the VNS. The efficacy I tout (when I ever mention it) is straight from the results of the clinical trials. Can't be more objective than that, can I?

...
I find it really strange that you rate aromatherapy higher on your alternative therapy chart than VNS.

I was also quite clear on how the scoring on the chart was derived and on the aromatherapy page itself I state:

I am only aware of one published study on the use of Aromatherapy for treating epilepsy (thanks epileric!), and the author admits it wasn't a controlled study, so the results are suspect. That said, this is what they found:

I can appreciate your lack of trust in anything not promoted by the medical establishment, but there's no need to be rude, dude.

BTW, the preponderance of studies for EEG neurofeedback comprise a larger sample size than the initial studies that got the VNS it's FDA approval for epilepsy treatment.

YMMV and good luck with whatever path you choose.

 

[Belinda5000]

Arnie,
I wish u the best if u get the VNS, it started out great for and just stopped working.
Oh well that's life. I had my battery changed 3 times, it's different for everyone.

Belinda

 

[Cint]

Arnie,

I also have the VNS and it was a last resort for me. I had the first one put in back in 1997 after a failed temporal lobectomy. I'm now on my 3rd battery replacement and it has worked well for me. I had this new battery replacement back in April of this year and so far only one "aura" since. That's better than the brain surgery for me!

 

[arnie]

I talked to my neurologist about this last week, and he said he thought it would be a good idea for me to have the vns placed because of the nature of my seizures, the fact that meds have not helped helped control the partials to a great extent, because they have not been able to find a locus for the seizures, and because in all these years we have never been able to find any specific triggers for the seizures. I'm going to have an mri on Thursday since it's been a number of years since I've had one, and if that doesn't show anything interesting that can be addressed I will have a consult with the surgeon and we will set a date for the surgery. (I have already met the surgeon. He did a fusion on my wife's nck a couple of years ago and he is amazing surgeon. I also spoke with my neurologist's nurse, whose husband has a well-controlled sz disorder, and she told me that, based on her 16 years experience as a neuro nurse, she would not hesitate to recommend vns for him if the meds were not working. Finally, my neuro said he has several patients with the vns that he will try to get me in touch with. One has had it for about 12 years, one for 3, and one for about 6 months. It will be nice to talk with all of them. I will keep you posted.

 

[Nakamova]

I hope you feel confident in your decision and happy with the surgeon Arnie. If you change your mind about the VNS, you could look into trying a new med for simple partials that's just been approved (called Aptiom).See http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm374358.htm

 

[arnie]

I feel very confident in the surgeon, which takes away a big bunch of anxiety, and the thing that appeals to me about the vns is that it doesn't have the same "menu" of side effects that the meds do. I have had really bad luck with the ones I've tried and I'm feeling pretty gun shy about trying more. Even attempting to ramp up the lamictal much past 400 pretty much knocks me on my butt. (At least it doesn't make we want to jump off a bridge like a couple of the other ones did!) I wish I could be certain that it would reduce the seizures, but I guess that will be something that only time will tell. I'm not even close (yet) to wanting actual brain surgery, because even though I know it has worked for lots of people it seems like a pretty irreversible thing, and that if something happens to your brain or personality or whatever there is no getting it back. Anyway, nothing is cast in stone yet. I will talk to my neuro again after the MRI and see how things go from there. I do know that after all this time I'm no longer OK with having all the partial szs. (both complex and simple, actually, but still . . .) and I need to go to another level somehow.
I'll keep y'all in the loop. Thanks!

 

[2ndchances]

Hoping you and the surgeon get clarity after tomorrow's MRI, Arnie... keeping you in my thoughts as you come to making this decision!