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vns implant

ok, here's the deal, and i'm super freaked out about it so i hope at least one other person has experience with this so i will feel better. For 15 months now i've had the VNS implant, so far everything has been great (even got off one of my meds completely!) so last week I start to notice that i can feel the lead in my neck. now you can actually see the lead sticking out. So i went to my nuerologist and they took xrays and are sending them to texas (for cyberonics to look at them). Anyway until we get those results i feel tightness and the choking feeling all over again. Also i asked the technician who took the xrays to let me see them and it look like most of the cord was in the neck, i thought the "excess" cord was suppose to be in your neck?! has anyone else had this experience? they said possibly that the "grounds" holding the lead in place may have broken or something along those lines...any comments would be appriciated, i don't find out for 2 weeks unless it's bad news :(

Comments

Re: vns implant

may daughters (23) her doctor had suggested a couple of years ago the surgery for her seizures.  She doesn't have insurance and she didn't qualify for medicade.  We are currently waiting to hear back from the UofM to see about financial support.  In the meantime her doctor suggest last week the VNS procedure.  Can anyone out there explain to me how it feels?  I've read up on it, but would like to hear from someone who has this.

Thanks to you all, God Bless!

Re: vns implant

Keep me informed how are you doing? I do not know much to say. My brother has this vns too, and I have seen so many changes with him, I am reading all I can to learn. Hope all is good for you.

Re: vns implant

Well I'd like to congratulate you on getting off your meds. I've had the vns for about 5 yrs and I'm still on 4 meds but congrats to you! I've never heard that happen to anyone(until now) and it never happened to me. I'm no expert so all I can say right now is I wish you the best and keep us posted. :)

If the wire is actually

If the wire is actually disconnected or broken you should be able to test that with the magnet they give you. Pass it over the place where the VNS is in your chest and you should be able to feel the device fire. I was actually told to try that on a daily basis to make sure things are stilll working. I made a habit of doing it right after shaving and washing up each morning when i put the magnet back on my wrist.

So far i have not had a problem with it that way. My device has only been in since August. So far my seizures have been significantly reduced. I hope the same is true for you.

Karl W. Greulich

Re: vns implant

I go meet my neuro surgeon Wed. the 26th to discuss this procedure.My seizures are horrible they have literally taken my life from me. And when i have the wonderful real bad ones about every three weeks i usually have 5 to 8 and i feel like i have been hit by a train.I am scared to death about this vns and i would love for people to talk to me about it.Please get ahold of me I want to make sure Im doing the right thing.I am scared to hope that is something I haven't been able to do for along time. GOOD BLESS.

Re: vns implant

Hello, I can understand your fears. I have had 2 put in. I wore out the first one out and I am now on my second one. I have had great results from mine.  If you want to hear more from me just let me know. God bless you  Kat

Re: Re: vns implant

Hi Barb - I've had the VNS for 2 years now, and am extremely happy with it. It has cut down the time it takes me to come out of a seizure and to be able to respond to people around me. My husband believes that it has cut down on the frequency of my seizures also. I haven't had any difficulty with it, except for a bit of hoarseness in my voice at times. In June, my epileptologist turned it down a bit, but last week, turned it up again to see how I could tolerate it again. So far, no difficulties. If you have any questions, you can e-mail me through my profile page.
((( hugs ))),
Barbie

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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: vns implant

Hi Barb,

I will be thinking of you as I will be seeing my neurosurgeon on Friday, the 28th for a consultation and the VNS procedure. :) Something that I have been doing is writing a list of questions to ask the neurosurgeon during the visit. There are many things I basically am aware of so it will help. Another thing that will help is if someone also goes to the visit with you for moral support because they will be able to hear things that you may miss during the conversation. My husband is going with me because he is very good at picking up on certain things and asking questions that I sometimes don't think of.
Good luck and keep us posted!

Sue

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