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Old 11-26-2013, 12:44 PM
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my vns experience


Hello all! I've posted some of this info in other threads, but I decided to start a new one to update you on my vns experiences.

I've had diagnosed epilepsy and been on meds for just over 30 years. The meds control the tonic-clonics but not the simple and complex partial seizures, or the subclinical seizures, which my neurologist and I believe I am having a lot of, and with increasing frequency. Perhaps as many as ten or twenty per day. I've tried 5 meds, and Dilantin and Lamictal are the only two that have had tolerable side-effects. The Dilantin had to be discontinued after about 15 years because of gum problems and possible hippocampal sclerosis.

I was always willing to live with the partial seizures since they did not affect my life too much, but in the last 6 months or so, even though I have had fewer partial seizures (about 175 so far this year as opposed to nearly 300 at this time last year) I have had increasing memory problems and an overall "bad feeling " about what these seizures are doing to me. I imagine many of you will understand. I am very reluctant to have a lobectomy, both because that is completely irreversible, there are lots of potential side-effects, and because there has been no definite seizure locus found for me.

All that said, I talked to my neurologist about a vns implant, to at least reduce the number of partial and subclinical seizures that I have and, presumably, reduce the long-term damage that these seizures are doing to my brain. I am only 55 and I would like to have at least 30 more years of good life with a well-functioning brain. The neurologist said he thought vns would be a good coice for me, and after having done some research and talkied to a number of people who have had the procedure done, I have decided to give it a go. My insurance has approved it and I have an appointment with the surgeon on December 13. From there we will set a date for surgery. The sooner, the better, as far as I am concerned. One very positive thing is that the man who will do the implantation is the same surgeon who did a disc fusion on my wife a number of years ago. He is a world-class surgeon and I have complete faith in him.

I will keep y'all posted on how things are going. I like this community and am glad I have a place to talk and vent where people understand me. I can't talk too much about epilepsy to my wife because it really scares her. I have an adult daughter who has a seizure disorder, which helps, but it is still nice to have this large, anonymous, understanding community for support.

Onward and upward! Have a great Thanksgiving and/or Hannukah!
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Old 11-26-2013, 01:18 PM
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Congratulations on moving forward with the VNS Arnie! Keep us posted on how things go. I'm rooting for you.
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Old 11-27-2013, 04:02 AM
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I do hope you have great experience with VNS it wasn't so with me and now it can't be removed without getting infected.


My seizures just kept on coming except at first and I had my battery changed 3 times.
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Old 11-27-2013, 10:02 AM
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Good to hear you've decided to go for the VNS, Arnie. I certainly hope it works for you. I hear you about having a lobectomy. That is one thing I will regret forever and cannot change. The VNS works much better for me than brain surgery did.
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Old 11-28-2013, 07:59 AM
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Arnie, so glad you gave us an update. Been wondering where you were/are in the process. So glad your insurance is being supportive. Please keep us posted as to the time line of your next steps and, of course, your outcome.

Susan
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Old 11-28-2013, 09:48 AM
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Happy to hear that your neurologist is on board, and that you already trust your surgeon. That's so incredibly important. Wishing you only the best, and I look forward to hearing about your progress!
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Old 12-31-2013, 12:30 PM
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Another quick update: The insurance company has approved the procedure and I got a call from the surgeon's office this morning to schedule the placement. I will be going "under the knife" at 0730 (PST) on January 8. I have to check into the hospital at 0530! I'm glad to have this underway because I simply have not been feeling like myself for a long time now, and it seems to be getting worse. I'm optimistic that the VNS will help me, but time will tell . . .

Happy New Year to all!!
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Old 12-31-2013, 12:46 PM
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wow you're already scheduled!!!! woot woot! that's in a week holy crap, you nervous? i would be, hugs friend.
onward and upward right... looks like 2014 is shaping up for you real fine
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Old 12-31-2013, 01:29 PM
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Originally Posted by arnie View Post:
I will be going "under the knife" at 0730 (PST) on January 8. I have to check into the hospital at 0530! I'm glad to have this underway because I simply have not been feeling like myself for a long time now, and it seems to be getting worse. I'm optimistic that the VNS will help me, but time will tell . . .

Happy New Year to all!!
I'm happy you have the surgery scheduled soon and I do hope you have as good of an experience with the VNS as I have! It will take some getting used to at first, so don't expect too much, too soon.

May 2014 be better for you as well.
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Old 12-31-2013, 02:13 PM
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Thanks, guys! I'm actually not too nervous. I'm not bothered by hospitals or surgery, I have a high pain tolerance, I can take as much time off work as I need since I'm the boss and it's a really slow time of year, and, as I said, I'm very hopeful that this will work.
I'm glad the surgery is really soon. I don't want to wait.
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Old 12-31-2013, 02:34 PM
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well then! what a man, so strong.
not bothered by hospitals or surg, high pain tolerance, no prob with time off, your own boss, and you're ready now.

epilepsy 0, arnie 1
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Old 12-31-2013, 09:53 PM
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Wow! congrats! I do not know how you do it. (all that bravery and such) I will try anything myself just on the fact that a seizure may kill you. So why not try a new remedy? I can not wait to hear about how this is for you. Take care.
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Old 12-31-2013, 11:09 PM
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Actually, I don't feel exceptionally brave, just accustomed to hospitals and blood and stuff. I worked as a kidney center social worker in a hospital for about 15 years and talked to and worked closely with hundreds of people who had had surgeries. I got pretty used to all the cutting and such, and only saw a handful of problems resulting from surgery, so I'm pretty used to it all. I've had three surgeries myself with no problems, so that helps, too. Happy New Year ! (again)
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Old 01-01-2014, 11:04 AM
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So hoping this makes a huge difference for you, and you begin a new year with a renewed and well-deserved sense of health and well-being.
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Old 01-01-2014, 11:18 AM
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Originally Posted by arnie View Post:
I got pretty used to all the cutting and such, and only saw a handful of problems resulting from surgery, so I'm pretty used to it all. I've had three surgeries myself with no problems, so that helps, too.
I had plenty of surgeries before my VNS surgery, too. Three plastic surgeries because of burns, gall bladder surgery, a failed brain surgery (that in and of itself is a long ordeal) and a few female surgeries. So, the VNS wasn't that big of a deal to me either.
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Old 01-01-2014, 12:01 PM
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I am pretty used to hospital myself. I always ask them silly questions like "Is there coffee in the O.R.? " do you have MRSA vaccine yet?
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Old 01-06-2014, 11:52 PM
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Well, I went in this morning for some lab work, and I will be having surgery in about 36 hours. I admit I'm getting a little nervous now, and also really hoping it will work for me. I had 3 simple partials yesterday and quite a strong one at about 3:00 this morning. It woke me and my wife up, with my lip-smacking and, I guess, making some movements and breathing funny. When I woke again a few hours later it took a minute or two to remember what month and day it was. I started out thinking it was November, then December, and finally I figured out that it was the 6th of January. That's pretty confusing and a little scary. My wife is getting nervous, too, and the seizure this morning scared her. Such is life with epilepsy, isn't it?

On a much more positive note, my 30-year-old daughter got married this weekend, and it was an absolutely perfect wedding and reception, and she looked amazing, beautiful, radiant and very happy! (Even better, she and her fiance have been together for a while and both have very good jobs, so they footed the bill themselves! Nice, eh?)
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Old 01-07-2014, 12:06 AM
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hi Arnie,
Best of luck with the VNS, I don't know much about the VNS but hope it can help with the seizures.

Also wanted to say congrats to your daughter & her fiance, glad to hear it was a great day
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Old 01-07-2014, 12:10 AM
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Arnie, you will be in my thoughts and prayers these next days. I truly hope you will get some relief from the unrelenting seizures. We leave January 9th for our bike tour across Vietnam but will have access to wifi vi my iPad. I'll be following your updates.

Susan
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Old 01-07-2014, 07:20 PM
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HUGS sweetie.
that one at 3am sounds like a complex, simple turned complex maybe. lip smacking and memory affected like that within a few hours is pretty standard c.p. symptoms. looks like the vns has come at the right time friend.
you're in my thoughts, let us know how you're doing as soon as you're feeling up to it k?
coming out with flying colours...

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