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Author Topic: I am experiencing pain that seems to be centralized around the lead/coils  (Read 49454 times)
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Dispatch
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« Reply #60 on: March 07, 2011, 12:00:01 AM »

 Smiley OK, well, all remains status the same with special precautions when you have MRI's and such.  A workable situation most times, but never forget the coils are in there.  Did your surgeon advise if he placed caps on the ends of the leads he clipped so you're not being poked?

How are you feeling as each day passes?  I hope you are doing better! Smiley

Be well!
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« Reply #61 on: March 10, 2011, 12:48:02 PM »

From what the surgeon told me, he clipped the leads as close to the coils as possible. He didn't seem to think that there would be a need for capping the wires. I assume he didn't leave enough there to put caps on anyway. The last couple of days have been a little rough because I am out of the strong pain killers. I still have muscle relaxers if I need them. The pain I'm having now is much closer to my left ear, rather than in my neck. Maybe there is still some swelling in there from the surgery. I stopped taking the Neurontin, but I'm thinking about going back on it for a couple of weeks or so.
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« Reply #62 on: March 11, 2011, 09:24:26 PM »

 Smiley Here's good thoughts that all will get better & better as each day passes!

I can imagine you are quite sore.  It takes awhile, and considering how your head/neck were placed during the operation, then add all the moving around he did in your neck & chest area.  For me pain level wise, it was worse having it removed, but it was worth it.

All good things!  Be well & try and have a relaxing weekend!
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

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« Reply #63 on: March 20, 2011, 02:59:41 PM »

Unfortunately I'm still having pain in my neck and left ear.  I'm still suffering from hearing loss and tingling/pain in my left arm and hand.  I will be seeing a neurologist in a week and a half.  I don't know what to do now.  The surgeon told my parents that he had no doubt that the VNS is what was causing my pain, due to swelling and redness that he discovered in there.  I wish he could have removed the coils.  I still think the coils are compressing/irritating the nerve.
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« Reply #64 on: March 20, 2011, 06:48:51 PM »

I think you are correct.  He should have removed the electrodes.
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« Reply #65 on: March 25, 2011, 09:23:49 AM »

I have received an email response from a neurosurgeon who told me he has removed about 40 of the VNS devices including the electrodes.  He told me that in about 10% of cases, he was unable to remove the coils.  He did not specify why the removal was not possible.  He also told me that he is not sure that my symptoms can be explained by the electrodes being left in place. 

Many of my symptoms seem to coincide with glossopharyngeal neuralgia.  I haven't found any mention of arm tingling or pain in the descriptions of this disorder, however.  I have been experiencing some burning sensations in my throat.  I don't know if it is from nerve pain, or if it's stomach acid creeping up into my throat.  My throat doesn't look red or swollen, so I don't know.  Hopefully the neurologist can make some sense of this. 
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« Reply #66 on: March 26, 2011, 12:03:49 AM »

 Smiley HI midwestguy!

I'm hangin' in there with ya waiting to hear your next update.  Hoping for all good things for you! 

Is it possible for the surgeon who you've been in email contact with would be willing to re-look at the coils for possible removal?

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"I reckon it's again my turn to win some or learn some..." Jason Mraz

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« Reply #67 on: April 19, 2011, 11:22:03 AM »

I'm still having left ear pain, pain in the neck, and some tingling sensations in the left arm, but my symptoms have improved since removal.  The neurologist ran some tests and looked at my CT scans and said he couldn't find any nerve damage or anything unusual.  He told me that there is of course no way to test the vagus nerve for damage.  He said I could try to find a surgeon to remove the coils, but of course there are no guarantees that it would be safe or even fix the problems I'm having. 

In other words, he doesn't know what the problem is for certain.  I'm done.  I'm not going to any more doctors or even trying to pursue having the coils removed.  If it kills me, it kills me.  This entire ordeal has pulled me down so far.  If it wasn't for the pain it would cause my family and girlfriend, I would have just committed suicide by now and gotten it over with.

I'm going to most likely lose my Social Security benefits because I failed to report that I was working part time for awhile (my own fault, I know and will take 100% responsibility).  So I'll be back to no insurance and sucking down antidepressants if I can afford them by mooching off of my parents.


 
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dennis100
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« Reply #68 on: April 19, 2011, 12:43:21 PM »

The vagus nerve is one of the most important as well as crucial nerves in the body, as its branches meander from the brain through the tongue, ears, heart, lungs, and even various digestive organs of the body! The vagus nerve is not meant to be zapped 24/7. What the hell was the FDA thinking when they approved the device?

I'm in the same boat as you. Scar tissue encases not only my electrodes but also my carotid artery. God only knows what the future holds for me.

Hang in there midwestguy.
« Last Edit: April 19, 2011, 09:02:09 PM by dennis100 » Logged
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« Reply #69 on: April 19, 2011, 11:19:49 PM »

 Wink HEY midwestguy!  Hang in there!  Don't give up.  If there is a surgeon who can remove those coils without causing you further harm with the hope it makes these symptoms better for you, then go for it!  If not, let's work on making the symptoms better/tolerable so you can have quality of life.

Regarding your social security benefits--speak with a SSA Rep and ask that you be allowed to pay that back by them witholding part of your monthly payment.  Did you go past your trial work period and earn more than allowed at a part-time job?  This may be easy for you to get sorted.  Hang in there!

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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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