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Birdbomb
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« on: February 19, 2004, 10:15:57 PM »

My Vns has been off now close to 2 months.  I feel so much better and my side effects are begining to disappear.  However a lot of the old fun things are returning, like visual disturbances, auras.  Any one have the same results?  :unsure:  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Petunia
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« Reply #1 on: February 21, 2004, 09:54:56 AM »

Birbbomb-
do you mean the same things, that were happening when the VNS was on?
If so yes, I have reoccuring pain in my jaw, face, and arm.  I'm  still hoping  that will go away with time.  
 
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #2 on: February 21, 2004, 06:45:45 PM »

The VNS took away my auras, and the visual disturbances.  These were a varity of weird things.  One looked like a yellow stain in the right lower quadrant of my line of vision. Another is what I would call "holes" if you wet the tip of your finger and touch the screen on a color TV, the image is altered, I had little spots like that.  Or I'd see flashes of light, or what looked like sudden movenent in my peripheral vision.  But the most troublesome were where the thing I thought I saw was something else entirely.  Like looking at a $20 and seeing a $5.  Not good when I run register.
These things are returning.
The shooting numbness and pain in my left arm has almost completely disappeared. Yeah!! :D As well as most of the jaw,neck,ear and tooth pain. Boy that last one was awful especially after having 3 teeth pulled on that side and no teeth there to ache.  I think I'm lucky I didn't have the gastric or reproductive problems so many have but i did gain about 40 pounds!  I blame that on those crazy meds.
WHEEE!!! Are we having fun yet?
:blink:  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Petunia
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« Reply #3 on: February 22, 2004, 08:39:01 AM »

I'm so sorry, all of those things are returning.  Maybe, you could find one of those new wonderful drugs to help you.   :wacko:
Well, it was a idea.  
Hope your doing well, and if I haven't told you already, your pretty spiffy.   :wub:
Elisa
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
Birdbomb
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« Reply #4 on: February 22, 2004, 08:51:15 AM »

Thanks! :)  
I just felt the board needed to be kept going.  Purely selfish on my part, as I enjoyed reading the diversity of the subject.  This board really belongs to you guys, but I couldn't have done it without the help of Theranthrope.  He's my little computer geek and knows all the ins and outs of this stuff.
Kudos to him!!
:D  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Birdbomb
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« Reply #5 on: February 23, 2004, 07:01:03 PM »

I received this e-mail from "elect" and think it should be sharedwith the rest of us. :)

Report:

Ihave had many of the same symptoms , before turning off my VNS. The
bottom line is that I have a voltage leakage either at the site of the
connection at the vagal nerve or in the leads from the generator. As a
result the transferance of voltage was causing my optic nerve to swell
and in turn causing pain and vision problems.

The unit was turned off two months ago and I am beginning tosee my
vision approve and the pain dimished immediately after it was turned off.
Cyberonics is aware of the problem in others in that, when I called the
HOTLINE for assisstance they told me immediately what THE PROBLEM WAS
and sure enough they were correct. I am now contemplating my next move.
The options are to operate , find the point of leakage and insulate it.
The problem is that if  it is at the point of connection it becomes a
dangerous procedure. ANother option is to have the unit completely
removed. This again is dangerous given the proximity of the arteries,
muscles and nerves surrounding it and of course a risk of damaging the vagal
nerve. Last but not least is to do nothing. All of the above scares the
heck out of me.HAs anyone had any similar experiences in the area of
removing, replacing or repaing and
of course leaving the unit off bur in place within there bodies.
Sincerely.
elect
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
POSITIVEPERSON
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« Reply #6 on: February 24, 2004, 03:52:08 PM »

HI ELECT: THE DRS (EPILEPTOLIGIST AND NUERO SURGEON) AT THE MAYO CLINIC IN SCOTTSDALE SAID DEPENDING ON MY LEED BREAKAGE THEY MIGHT BE ABLE  TO PATCH. TESTS HAVE TO BE DONE BEFORE AND DURING SURGERY.
2ND  CHOICE ADD ANOTHER SET OF LEEDS AND TEST OLD VNS IF IT WORKS KEEP IT IN AND CLOSE UP, 3RD AND MOST DANGEROUS, IS REMOVE OLD LEEDS AND PUT IN NEW LEADS AND KEEP IN OLD VNS INPLANT IF IT WORKS WHEN TESTED DURING OPERATION.THE NUEROSURGEON PERFERRED TO ADD ANOTHER SET OF LEEDS. LESS DANGEROUS HE SAID.

ITS A YEAR LATER AND I AM STILL DISCONNECTED. SOME DAYS  I THINK I  ONE DAY I WILL GET IT FIXED.  I GUESS THE BOTTOM LINE IS ONE DAY I WILL MAKE A GUT DECISION AS I DID WHEN I DECIDED TO GET THE VNS IN THE FIRST PLACE TILL THAN I WILL BE ON THE LOOKOUT FOR SOMEONE WHO DID GO THRU FIXING THEIR LEEDS.


POSITIVE PERSON

MAY WE ALL LEAD SZ FREE LIVES WITHOUT MED COMPLICATIONS FILLED WITH LOVE AND LAUGHTER  
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Riva (POSITIVEPERSON) passed away October 26, 2007
We all mourn the loss of this wonderful lady.
Fay
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« Reply #7 on: February 24, 2004, 04:09:14 PM »

This is very interesting to say the least. Because we have no idea what caused Scott's optic nerves to swell, I'm extremely curious to know all of Elects other side effects from the VNS and how did they figure it out? I wonder now if this could have contributed to Scott's Papilledema and Intracranial Hypertension. Now that we've turned Scott's VNS off, today is the first day he hasn't complained once about his eyes hurting or having a headache and ate a whole small frozen pizza for lunch and ate a small salad and a normal portion of lasagna for dinner and then turned around an hour later and ate a piece of my birthday cake. We were scared his stomach would pop because he hasn't ate like that in over 2 years. He's had a g-tube for almost a year now because he didn't have an appetite or feel thirsty. He even laughed twice today which we hadn't heard in a long time. Funny that he laughed and I cried!! Thanks, Fay
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DBillin168
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« Reply #8 on: February 25, 2004, 02:54:37 PM »

Fay
I found information on the optic nerve and a documented case of a 6 yr. old girl with Horners syndrome CAUSED by the VNS for you to read. I posted it in the
"vns studies/reports" for you to read, it would take up too much space here.
I'm so happy to hear Scott is feeling so much better! You made my day today. I just found out my Neuro wants Keith to have a PET scan.
Has anyone here had one done with the VNS in place?  
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Birdbomb
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« Reply #9 on: February 26, 2004, 03:57:59 PM »

Fay,
I'm so happy for you and your little boy, as things are getting better.  So many children have this thing implanted and are going through the same things your son has.  Thank you for sharing your plight with the rest of us.
It scares me to think of the parents being "led down the garden path" by doctors who do not know all the side effects, or are being out right deceived about it.  Too many patients are afraid to speak up to doctors. People need to understand they have the RIGHT to be involved in their own care.
God bless and keep us up date.
Birdbomb
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Birdbomb
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« Reply #10 on: March 18, 2004, 03:29:06 AM »

Fay
How is your son doing these days?  It's been a while since your last update.
It has been several weeks since I have had any of the shooting pain and numbness in my arm and hand.  Although my post-ictal time has greatly increased, I still fell so much better with the unit off.  

Petunia, my little flower!
You are doing better as well! It is amasing to see such a variable in the vagas nerve.  In my opinion, I think in some people the left side is the dominate side and maybe that is why the range of side effects is so broad.  I wonder if testing should be done prior to implant to see which side is dominate.  I know several people who's heart is on the wrong side of the body, why can't the vagas nerve be misplaced as well?
Pity the only way to tell if it a sucess or failure is to have it implanted. Ah...hind sight is 20/20.
 
« Last Edit: September 26, 2004, 04:34:52 AM by birdbomb » Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Fay
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« Reply #11 on: March 22, 2004, 03:13:27 PM »

Hello,
Sorry I haven't posted. I've just been a little depressed and a little busy too.
My hubby and I are foster parents and we had an 11 year old little girl for over 8 1/2 months who we became very attached to that was moved to another foster home a few days ago and it broke my heart. I don't think I will ever get over her. I know I am supposed to love and take care of them as my own 4 kids but it really amazed me that I feel just like one of my own was yanked away from me. She calls every day wanting to come home. Oh how I wished she were mine!!!
Scott's seizures are better and he doesn't complain about headaches or eye pain except every few days and Ibuprohen actually helps now. He is asking for something to eat on his own and although he still doesn't eat anywhere near the amount he should be, we are just thankful he feels hunger. We are working on the thirst though. He still doesn't drink more than 4 or 5 swallows of anything and then we still have to push him to drink it.
We have an appt with the Neuro on April 9th. Scott is also scheduled to have a continuous EEG done before then but I still haven't heard what day yet. I know they'll call any day now to schedule it. I can't wait to see what is going on seizure wise.
I am also going to ask about having the VNS removed but I doubt the Neuro-surgeon that put it in will take it out. Last year when they changed out the VNS, I asked about the leads and he told me they keep using them because it is dangerous to take them out. When I asked him what would they do if the leads broke or for some reason needed changed out or changed he told me I didn't need to be worrying and hopefully the leads will last a long time. He told me he hasn't had to change any out yet and he was one of the first docs to be trained to implant the VNS so I wasn't worried then. Now I am a little bit more than worried! The Neuro told me the best thing to do is just leave everything in but turned off. But I worry about it turning back on by itself without warning or scar tissue building up and tightening the leads and pulling on the vagus nerve and causing even more problems than we already have. I wish I knew what to do!! Take care and hope things are ok at your house. How did the PET scan go and have you got the results yet? Scott's never had one. He has had an MRI and a MRV done with the VNS implanted. All the Neuro did was turn the VNS off while they did it and turned it back on when they finished. He did it in another room way down the hall from the MRI machine though.
I really appreciate all of you asking how Scott is doing and for all of your advice. It really has helped me deal with this. I've been here almost every day reading the postsand checking out the awsome links that are here. I feel like a kid in a candy store every time I visit the message board because there is always something else to learn about and always something new and interesting too. Thank you! Thank you! Thank you! Take care, Fay-Scott's Mom in Georgia-USA

 
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