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Author Topic: What is going on??? Broken Leeds? Bruised Muscles?  (Read 6146 times)
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roach4983
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« on: September 06, 2009, 04:35:22 PM »



I know I haven't posted in a very long time or have even been on the site...but...I have a serious issue, or at least serious in my eyes, and I am really hoping that you guys will be able to help me.

The problems that I am having is severe pain at the leed site, making things harder to swallow, breathe, and at one point making me throw up due to choking/gagging. I have since turned the implant off by taping my magnet over the 102.

I went to the ER here in Birmingham, Alabama. The second best hospital in America, UAB, and they haven't been able to help me besides giving me some pain killers, and saying an epileptologist will call me on Tuesday.

My question is this...what would cause this pain??? I haven't had my stimulator turned on since Saturday, Septemeber 5th, 2009 about 2:30pm. Which I am thankful that I have not had any seizures, but, the pain, and the problems I am having....I am really worried that there is some thing really wrong.

Can any one tell me what might be going?? Or if any one has experienced any thing like this??? Thank you :)
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Fay
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« Reply #1 on: September 07, 2009, 02:30:45 AM »

Oh Wow! Bless your heart! I hate to hear this and hope you don't start having seizures because of it.
I have no idea what to tell you other than to keep the magnet over it until you can see your VNS doc. This is an emergency and you'd think they could page the doc or find out if someone else on call can at least turn it off for you until you can see your vns doc. I know this has to be scary and very stressful. Both of which is not a good thing when you have seizures.
Just thought of something that might work. Have you tried calling your VNS docs office and talking to the doc on call? They might be more helpful than going to the ER. Or if that doesn't work, try calling other hospitals in your area and seeing if they have a Neuro or Neurosurgeon on call that can see you. Worth a shot anyhow.
Is it still causing problems while it's turned off or just when it comes on (stimuates)?
I hope that you will keep us posted. I'll def be praying for you. Hugs, Fay (Scott's Mom)
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roach4983
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« Reply #2 on: September 07, 2009, 04:06:11 AM »

I was actually starting to have seizures because of it. But, once I shut it off, I got better. I thought it was weird because the VNS is supposed to help stop my seizures, not make me have them.

Seems I don't have a VNS doctor in Birmingham yet, I tried calling my doc in Minnesota to see what I should do, or how I should deal with this, but, I didn't get any answer. That is why I chose to go to the ER. I knew some thing needed to be done. I did try calling one of the neurologists locally and the nurse said that seems that I am not a regular patient they won't be able to give me any medical advice. Go figure. So again, why I ended up going to the ER. It seemed like that was the only way to get a neurologists attention that some thing is terribly wrong. I thought that going to the ER they would of had to call in the VNS on call doctor. But, I was wrong there.

Since I have had the magnet over it (which has been a challenge in itself since Saturday) I am getting better. It isn't causing me problems. I am getting my voice back, I am not throwing up any more. But, if my magnet moves just a little bit, and it turns on, starting the regular stimulation again, it is like a really bad 'jolt' going through my neck and up the side of my head. I realize it right away and re-adjust it to make it shut off, but, it still is painful. Hence why it is still shut off.

I will definitely keep everyone up to date with what is going on. Any one can get a hold of me through any of my instant messengers:

use buttons at bottom of post to contact via instant messenger systems

I have been online pretty much this whole time. So I am pretty easy to get a hold of. Thank you very much for your thoughts and prayers   :D
 
« Last Edit: September 07, 2009, 04:14:26 AM by Bernard » Logged
Bernard
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« Reply #3 on: September 07, 2009, 04:12:39 AM »

Quote
... The problems that I am having is severe pain at the leed site, making things harder to swallow, breathe, and at one point making me throw up due to choking/gagging. I have since turned the implant off by taping my magnet over the 102. ...
From the physician's manual (bottom of page 10):
Quote
Device malfunction could cause painful stimulation or direct current stimulation. Either event could cause nerve damage and other associated problems. Patients should be instructed to use the Magnet to stop stimulation if they suspect a malfunction, and then to contact their physician immediately for further evaluation. Prompt surgical intervention may be required if a malfunction occurs.

http://www.vnstherapy.com/manuals/doc_down...E-959C9852EF8B}

 
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What do you know about neurofeedback?
Check out this chart of alternative epilepsy treatments.
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« Reply #4 on: September 08, 2009, 07:14:59 PM »

:D HI roach4983!

Sorry to hear you are having what seems to be pretty serious issues with your VNS.  It's a good thing you taped the magnet on.

I am glad Bernard posted what the manual says and the link.  VNS isn't supposed to hurt.  It is also in the manuals that VNS can increase seizure activity.

Please keep trying to get ahold of a doc ASAP to get this resolved.  You may want to consider calling Cyberonics and telling them to refer you to a VNS doc in your area.  If all else fails, go back to the ER.  Please don't let yourself suffer and most of all, don't let the medical pro's and Cyberonics let you suffer.

Please do keep us updated.  I am sending good thoughts your way.  Take care.
B)
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

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