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Remove VNS or Re-Implant it for the 3rdX?

Thu, 06/15/2006 - 10:56
I am scheduled for plastic surgery and a re-implantation of my VNS device that once again has come unanchored on July 7th. I have had my device installed since September of 2004 with no luck of it working and yet I keep giving it a try and a try but it hasn't worked yet. Now,I am scheduled for a pretty hefty and painful surgery for scar revision,plastic surgery due to the fact my body rejected the device the first go round with it. Then I had to have it re-implanted in August of 2005 because it became un-anchored and now they are doing it again. My quiestion and dilema is my doctors think I am going to be the 3rd of the stastics where the device isn't going to help out very much. However,I have tried every AED out there and it is basically,scar tissue from the removal of a malignant brain tumor that is causing my seizures. I am on Topamax and Dilantin now. What should I do? Re-implant the device or just have it removed and be done with it? I just feel like my body is telling me it doesn't want a foreign object in there for some reason and thats why it keeps coming un-anchored. WWYD? Thanks- Amanda

Comments

Re: Remove VNS or Re-Implant it for the 3rdX?

Submitted by cath_y on Tue, 2006-11-28 - 18:39
Amanda, Get it out while you can. I had mine put in september 2005 and it hasn't done me any good. I actually just went to my Epileptologist today to have it completely turned off. I had my RTL surgery on October 12th and haven't had a seizure since and My Epileptologist has been turning the vns down slowly until today when she turned it off. She and my Neuro-Surgeon both told me that the vns are useless and way over-rated. They both told me that I should have had brain surgery 10yrs ago when I asked my old neurologist and she told me there was NO WAY she would let me have it done. I should have gone for a second opinion, but she never suggested it to me. I Am having my vns removed this next month in December. I can't wait. Hope what you decide works for you. I didn't like the way my voice sounded hoarse everytime it came on, I don't like the fact that it has made my swollowing of liquids hard to do without half choking to death, it bothers me when I lay on that side when I sleep because it turns on me. Well those are a few reasons I want it out. Like I said, I sure hope all goes well, maybe you should look into seeing if your a good candidate for brain surgery. Take care. Cathy

Re: Remove VNS or Re-Implant it for the 3rdX?

Submitted by muffinpie on Mon, 2008-12-29 - 06:41

I had  a VNS and it is to me nothing but a pain. This is the second one within a year.

It wakes me up at night and hurts during the day. But my seizures have gotten less.

That is good for my husband. I go to see my Neurologist on the 10th of Jan. Hopefully

He will fix it. Good Luck to all of you with a VNS.

Mary E.

I had  a VNS and it is to me nothing but a pain. This is the second one within a year.

It wakes me up at night and hurts during the day. But my seizures have gotten less.

That is good for my husband. I go to see my Neurologist on the 10th of Jan. Hopefully

He will fix it. Good Luck to all of you with a VNS.

Mary E.

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