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Author Topic: VNS Device Completely Removed [Update]  (Read 5333 times)
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ericksmc999
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« on: September 29, 2011, 07:15:18 PM »

Hey all. 

I just wanted to post an update about my VNS removal.  Hopefully it can be of help to people. Specifically, I hope it dissuades those in a situation similar to mine from getting the full removal. I'd also appreciate any advice or suggestions you may have as I'm at a complete loss for what to do. 

By way of background, last November I had my pulse generator and a portion of the lead removed (it was originally put in for treatment resistant depression).  It was partially removed because (1) the device didn't help; and (2) one of the plastic clamps holding the lead in place was protruding out from my neck and was about to rupture. Ever since the surgery I have experienced plugged ears and constant and painful headaches.  None of the doctors had any idea why this was happening so we thought there might be an off chance that the remaining part of the device still implanted was the cause.

So this past June I made the decision to have the remainder of my VNS device (i.e. the coil wrapped around the nerve and a portion of the lead) removed.  After the surgery, the surgeon told me it was a complete success--that their hadn't been any complications and that the nerve was completely intact. Despite this, my voice is a raspy whisper (the doctor did warn that there was a 5% chance of this happening).  I have now had two EMG tests and both have determined that my left vocal chord is paralyzed--meaning there is no nerve communication with the left vocal fold.  However, it seemed like the risk of voice loss would only happen if the vagus nerve was severed or cut during the operation.  But my surgeon specifically said this didn't happen.  So I guess my question is: why do I not have a voice?

But I would have to say that the worst part of all this is not the voice loss but the fact my headaches are still there and are getting worse.  They are constant, painful and make normal activities difficult and unenjoyable--and getting rid of them was the only reason I had the remainder of the device removed in the first place.   

I'm sorry this post is such a downer but I just don't know what to do anymore.  Any thoughts?  Thank you!     
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Ariesangel
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« Reply #1 on: October 17, 2011, 07:16:54 AM »

Hi,
My name is Marilyn and I am wondering if Cyberonics paid for your removal or did they give you a hard time. I have  a pending suit with them. Can you please email me at marilyn.eisenberg60@yahoo.com. I found out in my medical records that they put in an expired lead and generator. When I had problems they said they ran out of funding. They wont even talk to me.I have problems with my memory now and electric currents that run up my neck and it feels like a blow to the head.

Thank you
Marilyn Eisenberg
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please make contact by pm or e-mail
ericksmc999
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« Reply #2 on: October 31, 2011, 07:04:46 PM »

Marilyn,
Its apparently in the contract (or was at least in mine) that you sign when you initially agree to get the device that Cyberonics isn't financially responsible if you get your device removed.  Sorry about your situation.
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jasspoet
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« Reply #3 on: November 11, 2012, 10:24:27 AM »

Hi,
Recently (17 days ago) I had similar procedure, complete removal of the VNS. My voice is still weak and raspy as you described yours in your post. However my doctor didn't warn me of the 5 percent possibility of vocal chord paralysis which in retrospect is disturbing.
If you're still on this board, I'd like to know if you ever got your voice back.
Or if anyone else on this board hasn't recovered their full voice after complete VNS-removal, please let me know.
Obviously I'm getting quite concerned.
Thank you!
(posted 11/11/2012)
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Birdbomb
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« Reply #4 on: November 14, 2012, 08:55:36 AM »

Welcome jasspoet

I sent a message to the op in hope for an update, with a note to please reply. 

With every surgery there are risks.  When the carotid sheath is messed with just about anything is possible, this is the reason why so many vns surgeries are messed up.  Surgeons who are not experts of the head and neck are not familiar with all the detail and possible outcomes of even the tiniest of errors, are performing these implants.  Their ignorance and inexperience are the cause of most problems. But do you think you'll get any doctor to admit it? Surgical errors are high because they think it's just a simple procedure.
Removal can have the same problems.  As hard as it is to find a surgeon to remove the damned thing, we have to be diligent about their field of experience.  Are they strictly head and neck surgeon? or a GP? Have they removed many of these? what is their success rate?  Tough choices. You think you found the perfect surgeon....
 Except, people like you who end up damaged.  I wish I had answers for you. The best I can tell you now is to find an ENT ( ear, nose & throat) doctor and have the vocal folds evaluated for damage.  It could be just swelling trauma from the surgery or the intubation, or it can be damage from the surgery itself.
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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!
ericksmc999
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« Reply #5 on: June 04, 2013, 06:03:31 PM »

Sorry for the belated response.  My voice did recover after a full explantation made me horse for roughly 3 months or so.  However, I've been having terrible problems with headaches ever since the partial removal (the full removal was done in the hopes of helping the headaches caused by the partial removal, but instead just caused me to lose my voice). Again, this was temporary, so hopefully that is the case with you as well. 
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