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Author Topic: Removal of Already Partially-Removed VNS  (Read 6177 times)
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ericksmc999
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« on: March 31, 2011, 07:39:10 AM »

Here's my VNS story. I hope it is helpful in some way. A few months ago I had my pulse generator and a portion of the lead removed. This was done (1) because the device didn't help; and (2) because 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 (with the exception of the first few days with narcotics) I have experienced constant and painful headaches.  I have also had plugged ears for over four months. Neither the headaches nor the ear plugging existed prior to the surgery. My headaches seem to be exacerbated by exercise or physical activity.  Even minimal amounts of physical exertion (i.e. bending over to pick something up) increase the headaches.   

As far as I can tell, I believe I have exhausted all possible treatment options.  I have consulted with numerous neurologists as well as otolaryngologists. I have tried acupuncture and physical therapy regimens. I have tried doing nothing--"giving it time" being the most popular solution amongst the doctors. Bottom line: none of these consultations or treatments has helped explain or alleviate my symptoms.   

The VNS Therapy Manual specifically states that when after performing partial explantations, “no more than four centimeters of lead should be remaining."  I have been advised by my neurologist and a radiologist that the length of wire left in my neck is approximately seven centimeters. And while I am not a doctor or medical expert, I like to think I am capable of objective and intelligent observation, especially when it comes to my own head.   Because I have been told no plausible medical explanation exists, I must entertain the idea that the remaining seven centimeters is the cause of my symptoms. 

Regards,
Matt
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« Reply #1 on: March 31, 2011, 10:12:35 PM »

 Wink HEY Matt!

So glad you posted again!  WOW, you sure have had your hands full.  I am sorry you're feeling so awful!

How's your blood pressure?  I ask because high blood pressure can come with VNS which can cause headaches and ear pain.  And, how's your blood sugars?  Again another ick to VNS is it causes nausea and puking which affects blood sugars which affects headaches and all the other downward spiraling stuff.  Also, during surgery, your neck was hyper-extended-do you have a neck injury?  Another question to ask is did you sustain vagal nerve damage?  That can cause all your symptoms too.

Treatment options for neck probs to visit with your doc about:  Chiropractor, PT, pain meds, rest, ice, heat

PLZ don't give up!  I am glad to have ya here!
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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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Fay
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« Reply #2 on: April 01, 2011, 04:31:25 AM »

Hows your vison? Any blurring or blind spots?
Scott had horrible headaches after having his vns generator replaced that were so severe we took him to every ER in the metro Atlanta, Georgia area and not one of them found anything wrong. Long story short we ended up at an eye docs office weeks after the headaches started after he started screaming "my head and my eyes going to pop!" one morning. His optic nerves were so swollen she thought he had a brain tumor. She called Neuro and we were worked in the next day for a spinal tap, MRI, MRV, MRA, numerous blood and other tests. Come to find out the vns caused Papilledema and Intracranial Hypertension. Didn't know it was the vns until high doses of steroids and Diamox did nothing to lower the spinal fluid or decrease the optic nerve swelling. The Neuro asked the Neuro-Optic to look at Scott's optic nerves while he made the vns come on. BAM! Neuro-Optic dropped her little thingy and screamed at the Neuro to immediately turn off Scott's vns cause she thought she was going to see Scott's opric nerves rupture right before her eyes. Every time his vns came on, Scott's optic nerve would bulge even more than they were already bulging. The Neuro turned the vns off and we were finally able to get both the Papilledema and the IH into remission with the steroids and Diamox. It was a really horrible experience and unforn both can come back without warning at any time even though he had the vns generator and majority of the wires removed. They couldn't tell what was vagus nerve and what was scar tissue so they had to leave enough wire to cap and the coils are still implanted wrapped around Scott's vagus nerve. Only God knows what's going to happen next.
I'd have an eye doc look at your optic nerves just to make sure same thing isn't happening to you.
I hope the headaches go away soon. Take care, Fay
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ericksmc999
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« Reply #3 on: April 02, 2011, 06:19:38 PM »

Thanks again to everyone for the incredibly helpful responses.  I'm going in to talk with my surgeon next Wednesday to discuss doing another surgery to remove more of the remaining device and to completely forgo an MRI.  I'll let you know how it goes.  Also, let me know if you have any other questions.  I'll try my best to be helpful.
-matt
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« Reply #4 on: April 02, 2011, 11:37:01 PM »

 Smiley HI Matt!

You're quite welcome!  We hope to hear good news from you very soon! 

I have a question for ya--how are ya holding up with all of this ick going on with ya?  I hope you are managing well.

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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
Birdbomb
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« Reply #5 on: April 27, 2011, 06:36:01 PM »

How have you been Matt?  Any better on the headaches?. 
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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
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ericksmc999
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« Reply #6 on: May 19, 2011, 07:24:00 PM »

Hi Birdbomb,
Thanks for checking in.  The headaches are the same.  They seem to get worse when I do something active (i.e. run), flex/lift something heavy, or when I lower my head below my heart (i.e. leaning over and picking something off the floor).  I'm scheduled to have the remainder of the device completely removed (remaining electrodes, coils and all) in early June.  I"m pretty nervous about it as I know there are higher risks involved than with the standard partial removal.  Let me know if you want to talk about it. I know you haven't had it done but I'm sure you or someone else on this listserve knows more about it than I do.  I'm all ears. 
-Matt
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« Reply #7 on: May 26, 2011, 11:02:51 PM »

 Wink HEY Matt!  Great to hear from you!  THNKS for the update!  Glad to hear you're moving forward with complete removal, and completely understand that you're nervous!  I was too!  The only thing to concern yourself with in my opinion is futher nerve damage upon removal!  I shall keep my fingers crossed and say prayers you will do ACE!  If ya got any queations, please feel free to ask.

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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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