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Author Topic: I am experiencing pain that seems to be centralized around the lead/coils  (Read 46675 times)
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midwestguy
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« on: December 22, 2010, 11:06:21 AM »

I was implanted in 2006 for treatment resistant depression.  Due to some concerns I was having about sleep disturbance, and the skepticism of a new psychiatrist, we turned the device off approximately 18 months ago.  Two weeks ago I started feeling discomfort in my neck that soon progressed into severe pain.  I was given some pain meds by my family doctor, and luckily was able to see the ENT surgeon who implanted the device.  He told me that he thought I had an infection and prescribed antibiotics.  The antibiotics certainly helped, but I still have a poking or pinching sensation around the base of the coils. 

After many phone calls, I am finally having diagnostics run on the device tomorrow.  I spoke with someone at Cyberonics and they said the diagnostics would let us know if there is a breakage in the lead.  I live in a rural area, and the psychiatrist who recommended the device to me is long gone.  My current psychiatrist is three hours away, so I most generally only see him via telemedicine.  The ENT surgeon is two hours away.

Has anyone else here experienced similar pain?  My concern is that a piece of the coils or the lead has broken off and is causing this pain.  Can the coils be x-rayed to look for breakages? 

I feel so alone with this.  I am so thankful I found this message board.  Does anyone know if Medicare will pay for explantation if it comes to that?
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dennis100
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« Reply #1 on: December 22, 2010, 08:58:29 PM »

You don't have to feel alone in this midwestguy, actually a breakage or fracture in the lead causing pain is quite common. A lead check will be done during the unit interrigation. If a fracture is suspected they will take an X-ray as it sometimes can be seen on the film. If there is a break in the lead, it has to be replaced.
Good luck.

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midwestguy
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« Reply #2 on: December 23, 2010, 09:32:45 AM »

The diagnostics did not show anything unusual.  I don't know what to do now.  I still feel as if something is poking me around the coils. 
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Birdbomb
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« Reply #3 on: December 23, 2010, 10:49:45 AM »

Welcome.
Your doctor needs to contact Cyberonics. ASAP It may be the particular model you have, but I suspect it's a minute fracture plus the generator may not be staying off.  Is the pain constant or intermittent? sharp?  or ache?  This is something that needs to be addressed, NOW.
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dennis100
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« Reply #4 on: December 23, 2010, 12:32:49 PM »

midwestguy, try holding the magnet on the device to see if you get any relief from the poking.
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midwestguy
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« Reply #5 on: December 23, 2010, 05:10:23 PM »

Thanks for the replies. My implant is set to 0 ma output. Just to be sure, I've tried the magnet and it has no effect on the discomfort I am experiencing. What is the fracture that you are referring to?  A fracture in the insulation or the wire itself?

I have an appointment with my psychiatrist on Tuesday. Right now, the pain is like an ache or burning sensation.  It seems to fluctuate, but never fully goes away. The antibiotics definitely helped, but something still doesn't feel right.
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« Reply #6 on: December 25, 2010, 11:28:53 PM »

 Smiley HI Midwestguy!  WELCOME to the board!  Glad to have ya here and hope we can be of assistance to ya!

I have heard about the sensation you are having.  If I recall correctly, one outcome was the area around the vagus nerve was infected and inflammed.  Another situation turned out the coils were wrapped too tightly.  There was a recall on leads after 2006, I think the 302 models #.  I did have that pulling/stinging feeling and sometimes still do-it is in my case most likely from the 2 surgeries and the nerves being cut.

Again, a BIG WELCOME!!! and plz let us know how things are!

Be well! Cool

PS: Wanted to add I had neck issues also from the way my neck was positioned for both surgeries.
« Last Edit: December 25, 2010, 11:58:34 PM by Dispatch » Logged

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« Reply #7 on: December 27, 2010, 01:41:36 PM »

I went back to my family doctor today for more antibiotics.  Tomorrow I am seeing my psychiatrist. The first round of antibiotics helped, but as soon as I was out of them the pain started flaring up again.  Tomorrow I am going to call Cyberonics and try to find a surgeon or neurologist closer to my area. I'm just about ready to drive to a bigger city and check in to the emergency room.
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midwestguy
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« Reply #8 on: December 30, 2010, 01:55:25 PM »

I have another appointment with the surgeon on Wednesday. Until then I'm just trying not to move around too much, and taking the meds.  Hopefully the surgeon will have some ideas about how to fix this.
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« Reply #9 on: January 02, 2011, 10:16:17 AM »

You need to be on some kind of pain killers. I understand that kind of pain, it's horrible. I now have a pain management doctor and we work together to ease mine but it's hard to control my fibromyalgia and RA.

There are any number of reasons for your pain.  I've been doing some research as to what may be the cause.  Here are some images of the electrodes. They might give you a clue as to the pain. I have no doubt in my mind the electrodes are the cause.  I think Dennis has even posted MAUDE Reports where the electrode have "fallen" off the nerve.

       




This photo is very interesting , wish I could have found a larger image.   
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« Reply #10 on: January 02, 2011, 11:26:45 AM »

If your VNS is turned off you need to go somewhere that they know what they are doing and I have found that the emergency room is not the place, and I live in a big city!
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midwestguy
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« Reply #11 on: January 03, 2011, 10:17:12 AM »

Thanks for those images, and the support.  Do all versions of the lead have the anchor, and two electrodes?  I can see and feel only two bumps under my skin.  This makes me wonder if the surgeon left the anchor out for some reason.  The problem seems to be with the coil that is the lowest on the nerve.  If I pull on my skin slightly, I can see it move around, while the upper bump remains stationary.  Perhaps the electrode or part of it has pulled loose and it's poking the nerve.  If the electrodes are that loose, I suppose it's good news if explantation is necessary.

The latest development is that my left arm feels as if it's going numb.  Occasionally I feel pain in it.  My psychiatrist told me that he didn't think I should be too worried about this right now, because it could just be from the nerve being pinched or irritated.  I'm just trying to remain positive until I can meet with the surgeon on Wednesday.  I'm also hoping that if he decides to perform surgery I won't have to wait too long for it to happen.  I can't do much of anything right now because moving around a lot makes the pain worse, and taking the pain meds makes me so sleepy.
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« Reply #12 on: January 05, 2011, 08:24:34 AM »

My vns was causing shooting pain and numbness down my left arm with each stimulation. I told my neuro to turn it off.  The Rep from Cyberonic$ was livid. He just wanted to change settings and tried to tell me it wasn't the vns causing the problem. I stood my ground and insisted it be turned off and that I was going to keep it off.  Both the Rep and Doctor were not happy with my decision.  No bonus in their paycheck that week!
I made the right choice for me.
Please keep us up to date.  I just don't understand how a doctor can allow any patient to suffer with such pain.  Everyone passing off responsibility, see the programmer, no see the surgeon, no see the rep, no see your GP no go to the ER. If even 2 of the professionals got together, they could work out a treatment plan.
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Electrodes are in me for LIFE!
midwestguy
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« Reply #13 on: January 05, 2011, 01:36:36 PM »

The surgeon ordered a CT scan of my neck. They said it would take a day or two to get the results from the scan.  I have another appointment in two days. The good news is that I was able to make it through the day without taking any pain meds. 
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Birdbomb
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« Reply #14 on: January 06, 2011, 07:19:54 AM »



Hoping for an answer!
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midwestguy
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« Reply #15 on: January 08, 2011, 03:13:39 PM »

The CT scan didn't show anything unusual. The surgeon told me he is "not convinced" that the implant is causing my pain. He told me that he isn't comfortable doing surgery because he isn't sure what the problem is.  He suggested that the pain is neuralgia.  He then referred me to a neurologist, and I only have to wait THREE MONTHS to get in to see him.

So, I'm basically back to square one. I suppose I should be relieved that the scan didn't find anything. I will be making some phone calls on Monday to try to get an earlier appointment with a neurologist.
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« Reply #16 on: January 09, 2011, 12:11:01 AM »

Now why doesn't this surprise me?  I've heard it 100's of times before.
Quote
The surgeon told me he is "not convinced" that the implant is causing my pain.
The vns CAN and DOES cause pain and problems to the vagus nerve and other nerves close by.

neuralgia

You bet! Nerve damage from the vns. They are "not convinced"??!!  Well how in the hell did the nerve get damaged in the first place? If the vns had NOT been implanted, would you be having this issue now? I very seriously doubt it!
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Electrodes are in me for LIFE!
midwestguy
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« Reply #17 on: January 11, 2011, 10:58:02 AM »

Today I was able to get an appointment with a different neurologist. Now I only have to wait one month instead of three. 

Birdbomb, I sent a question to you via private message.
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dennis100
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« Reply #18 on: January 12, 2011, 11:31:37 PM »

I think Dennis has even posted MAUDE Reports where the electrode have "fallen" off the nerve.
The implanting surgeon indicated that the reason for replacement was that the lead had "slipped off the nerve".
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/detail.cfm?mdrfoi__id=627565

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Birdbomb
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« Reply #19 on: January 16, 2011, 12:51:45 AM »

I think you might want to call that dr.'s office every morning and see if any cancellations can fit you in. I just hope your neck isn't getting fried.
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Electrodes are in me for LIFE!
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« Reply #20 on: January 18, 2011, 12:24:45 AM »

 Grin Hey Hey!

Hope you can get in sooner midwestguy! 

Yes, they always say it isn't the VNS when that's the 1st thing these docs need to rule out.  I am so glad you've had these scans done, in the same respect, it would be quite hard to determine if the coils are wrapped too tight by a scan--it's a need to see it for oneself kinda thing looking directly at it all in surgery as I was told by my explanting neurosurgeon.

Thinkin' 'bout ya!  Be well!
Cool
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midwestguy
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« Reply #21 on: January 19, 2011, 01:19:06 PM »

Thanks. I have an appointment with my family doctor on Monday. I think I'm going to ask her if she will do an xray to see if the coils look normal. I saw an xray online that showed a coil that had been pulled out of shape, causing it to compress the nerve. I don't seem to be getting any worse, so I suppose that is good news.  I'm just hoping the neurologist will have some idea about how to remedy this situation. My fear is that he will refer me to yet another doctor and I'll have to wait weeks or possibly months yet again.
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« Reply #22 on: January 19, 2011, 04:39:58 PM »

I wonder if you should ask him for a nerve conduction study.  It might help.  I've had them done for my arms and I'll not kid you they hurt but it show how much function is there.
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Electrodes are in me for LIFE!
midwestguy
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« Reply #23 on: January 24, 2011, 12:18:16 PM »

I saw the doctor today. She gave me some more pain meds and some samples of Lyrica to try. She told me to give it about a week and see if the pain improves. I have an appointment with the neurologist in three weeks. She said it's possible that the nerve has been stretched a little and is causing the pain.
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« Reply #24 on: January 24, 2011, 03:38:37 PM »

Good!  Your doctor believes you do HAVE nerve pain and possible damage.  She sounds like a keeper. My pain management doctor prescribed Lyrica for me last month and I have seen an improvement. Highest co-pay I have ever had.
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« Reply #25 on: January 24, 2011, 11:01:19 PM »

 Smiley Hello!

Yay midwestguy for good results with your doc!!!  Hope the Lyrica will be a success for you, and Birdbomb too!  I had some success with that drug for neuropathy.  It did work for a bit, then increased and worked for a bit, then the highest we could go with some success, then it stopped working for me just like most other prescription drugs.  Please though talk with your doc about your VNS before a nerve conduction study like should the device be off with the magnet or set to 0ma at the docs office then turned back on afterwards.  Cyberonics has a clinical tech support team that are supposed to talk with docs about stuff like that.

Be well!
Cool
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« Reply #26 on: January 25, 2011, 01:35:11 PM »

I'm kicking myself now for not asking the doctor to order an X-ray of my neck. I'm really starting to wonder if the surgeon implanted the electrodes upside down. In every image I've seen, the wire clearly enters the anchors from the top, and exits the bottom. Under the skin in my neck, I can clearly see that the wire enters the anchors from the bottom and exits the top. It then curves over and goes deeper into the neck. Maybe the surgeon didn't leave enough slack in there and it's tugging on the nerve.
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midwestguy
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« Reply #27 on: January 25, 2011, 05:29:16 PM »

I found an image in the brochure that shows it the way I have it in my neck, so maybe it's okay. Who knows. I'm tired of trying to guess what the problem is.
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« Reply #28 on: January 28, 2011, 11:06:17 PM »

 Smiley The not having enough slack could be the problem...hhhmmm...I'm stumped.  I think it is really sad that the patient has to figure it out why they don't feel good-that's nonsene.

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

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« Reply #29 on: January 31, 2011, 03:53:49 PM »

Hi again folks.  I just wanted to give an update.  I've now started taking Prilosec.  I was waking up in the night with my stomach gurgling and churning like crazy, and having some acid reflux.  I have also had some periods where my mouth seems to produce an endless stream of saliva.  The tingling in my left arm has gotten better, but it comes back occasionally, especially in my forearm and hand.  I have had some nasty ear aches in my left ear.  I took the Lyrica for a couple of days, but it made me feel really strange and so sleepy that I quit taking it.  I might start taking it again though, in hopes that it will stop the pains I am having.  Riding in the car seems to make the pain in my neck flare up a lot more.  I think all of that moving around is causing the coils to rub on the nerve and irritate it. 

I just hope that the neurologist I am going to see will take the time to try and help me.  I really don't want to have another surgery unless that is my only option.  At the same time, I'm worried that just trying to cover up the pain is going to allow more damage to occur.  I'm seeing the psychiatrist tomorrow.  We cut my meds down a lot over the summer, but I'm going to mention to him going back on something to help me get through this emotionally.  Right now I am only taking Lamictal, and Ambien to help me sleep through the night.  I've also read that some antidepressants can help with nerve damage, so I will see what he thinks.  Thanks again to everyone here for the support.
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« Reply #30 on: February 01, 2011, 04:40:59 AM »

Thanks for the update.  IMHO The more you post the clearer it becomes that the vagus nerve is damaged.  Only a surgeon will be able to make that a diagnosis of built up scar tissue or actual coil damage and I'm really positive it will have to be done with a visual inspection. 

I take Cymbalta and Lyrica.  The combination makes an excellent duo for dealing with nerve pain for me.  My brain is so foggy at times but then Dilantin does that too. If you knew the pain I deal with you'd understand the trade-off is worth it to me.

Quote
I really don't want to have another surgery unless that is my only option.  At the same time, I'm worried that just trying to cover up the pain is going to allow more damage to occur.

That's the problem, Medication does NOTHING to fix the problem, it just hides the symptoms.  Big Pharma likes it that way, they make bank because that is the accepted treatment, hide the symptoms.

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« Reply #31 on: February 01, 2011, 08:53:24 PM »

 Smiley HI midwest guy!

THNX for the update.  With all this going on with your health, how are you holding up with the depression?  I can only imagine how you're feeling.  Hang in there, and we're trying to help ya get this sorted!

Vagul nerve damage sucks--plain & simple--and I could use worse words to describe it.  I will certainly keep my fingers crossed & saying good words to the guy upstairs that this will be under control for you soon! 

It has been such a struggle for me.  The prilosec works pretty good for me providing I eat right (no spicey stuff, low fats, high fiber...yaddayadda).  Gastroperesis can be the result of vagus nerve damage, and the tummy churning is a part of it.  I get what feels like flips going on--quite painful when it goes to the very full feeling when ya haven't eatten anything then the painful flips start.  Then, there's the times my food won't digest, so that causes tummy acid, churning, and the body wants the yuckie out, so there begins the puking.

I really hope your vagus nerve isn't damaged.  Please keep on your docs about this.  Has your doc said anything about your meds causing the acid issues?  Gallbladder issues?  Stress?  And remember, your vagus nerve runs from your brain and wonders to the tummy.

Be well!
Cool
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« Reply #32 on: February 02, 2011, 12:37:06 PM »

I've  read that the muscle relaxant I've been taking can cause stomach problems, so I'm going to try to stop taking it for awhile and see if my stomach improves.  I always try to take it with some food, but maybe it's causing problems anyway.  My psychiatrist gave me a prescription for Neurontin and Cymbalta. I have to wait to see if my insurance will improve the Cymbalta.

Of course the depression has gotten a lot worse since I started having problems with this pain. I'm basically living with my parents right now. I'm afraid to do much of anything for fear of making the pain worse.  I'm wondering if I should check into getting a neck brace for riding in the car. It definitely hurts a lot worse after I've gone somewhere.

I still can't figure out the connection between the tingling in my hand and the pain in my neck. I haven't read anything that seems to indicate that the vagus nerve is connected to the hand.
« Last Edit: February 02, 2011, 12:46:50 PM by midwestguy » Logged
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« Reply #33 on: February 02, 2011, 08:24:13 PM »

I have that connection.
It all depends where the implant incision for the generator is.  http://www.vnsmessageboard.com/index.php/topic,2056.0.html
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« Reply #34 on: February 04, 2011, 07:40:22 AM »

 Wink HI midwestguy!

Hope Birdbomb's link helped ya!

Hang in there!  It is quite difficult to manage depression when you are sick.  Just know you've got our support!

Happy weekend!
Cool
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« Reply #35 on: February 05, 2011, 08:53:37 AM »

Midwestguy, my apologies for the vagueness of my last post.  I should have explained. 

The location of my surgery was in the crease of my arm pit but not in the pit itself.  That particular area is where all the nerves for the arm and hand are bundled.  Whenever there is surgery, nerves are severed tiny, little nerves that will eventually find their way back if they can. 

But sometimes those nerves will make some kind of connection to the leads (as told to me by medical staff in my physical therapy). When that happens, every time the generator ramps up, those nerves fire up too and send shooting pain down the arm and hand.  This is why I insisted mine to be shut off. 

Dennis100 has found several MAUDE reported cases but mine was NEVER reported. Even at my insistence to the doctor and the Cyberonic$ rep. If that bitch still worked for them I'd post her name but, she's long gone.

The thing is, lead life is about 3 years.  The insulation becomes brittle and tiny fractures happen as would any aging electrical cord. Considering the areas of where the leads are positioned, there can be a vast array of misfiring with brittle leads.  Not all leads need to be replaced when time comes for a generator (battery) replacement either. 

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« Reply #36 on: February 05, 2011, 07:17:37 PM »

Do you know if replacing the leads also means replacing the coils that attach to the nerve?  Is it all one piece?

The neurologist's office is supposed to call me on Monday regarding an earlier appointment. The Neurontin is helping with the pain, but I can still feel the pinching sensation.  Of course I still have no idea how much damage is occurring to the nerve. I will keep posting updates.
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« Reply #37 on: February 05, 2011, 07:29:12 PM »

This might be an interesting read, but I don't really want to pay $20 to read it. 
http://www.neurology.org/content/60/7/1214.1.full.pdf

Late onset laryngeal and facial pain in previously asymptomatic vagus nerve stimulation patients
Neurology April 8, 2003

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« Reply #38 on: February 06, 2011, 06:25:40 AM »

If a lead replacement is done, the electrodes (coils) are never removed.  In fact when the FDA approved vns for depression, Cyberonic$ received a "Black Box" warning.   The coils were considered non-removable and would stay in the body forever. There is a lot of scar tissue that builds up and the chance of severe damage to the vagus nerve if removal is attempted.

Nice find on that article, but I don't want to pay the $20 either  Tongue
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« Reply #39 on: February 06, 2011, 11:40:49 PM »

 Cheesy I don't wanna pay $20 for it either when I pay my docs to tell me this stuff! LOL!!

At any rate, Birdbomb, you hit it right on the head with the nerve issues--and where your VNS was implanted, why sure that will mess up the nerves that all congregate right there.

I got to see my VNS after it was removed.  It's all one piece, and lots and lots of wires.  I will never figure how all that wiring fit in my neck.  And, to bring up the brittle condition of the wiring-yep, they are brittle and broke into little pieces in my neck during removal.  Lovely...

Hope today brings you good news midwestguy!  Take care!
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« Reply #40 on: February 07, 2011, 12:42:06 PM »

Well, I can't get in to see the neurologist earlier unless he has a cancellation. The good news is that I called a different surgeon's office (I got his name from Cyberonics) and asked if he does removal of the VNS. A nurse called me back and said that he told her he can remove it for me. She wasn't sure of the details regarding removal of the coils. I have an appointment with this surgeon next week, a few hours after the appointment with the neurologist. Luckily they are in the same city. I'm crossing my fingers that we don't get a snowstorm that will cause me to miss my appointments.

I'm noticing more issues with excess saliva and swallowing. I did a google search for "vagus nerve" and "saliva". Surprise, surprise, it's all connected.
« Last Edit: February 07, 2011, 12:44:44 PM by midwestguy » Logged
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« Reply #41 on: February 09, 2011, 03:36:12 AM »

Good for you!  Glad you found someone now we all are rooting it works out for you!  It does surprise me a little that Cyberonic$ had a recommendation.  Seems odd.  Oh well, I hope this is the guy that works!
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« Reply #42 on: February 09, 2011, 05:52:18 AM »

I just called the case manager and got the names of the implanting surgeons in my state. There are only two. From my conversation with the nurse, it sounds like this surgeon has some experience with removal. Complete removal including the electrodes might be a different story though.
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« Reply #43 on: February 09, 2011, 09:15:20 AM »

   Hello Birdbomb and midwest guy. Wow midwest guy you have the patients of Jobe! I would be beating down doors and caring a baseball bat or worse to these doctors' offices. I am beginning to understand your pain and frustration. Birdbomb your wealth of knowledge and support is right on and 110%. I now have moderate steady pain at every stimulation at the connection site, left jaw, left ear and I am losing more of my hearing in that ear too. And I have discovered I almost always grind my teeth. I can no longer swallow during stimulation or speak due to pain. My sleep at night is poor so I nap during the day once sometimes twice. I have to hold my head and neck just slightly to the right when I nap in the recliner or the stimulations cause pain and I can't fall to sleep. My awake seizure activity is better, BUT I am having horrid night mares. These night mares are absolutely the exact same kind I suffered as a child. In my dream suddenly every thing I see rushes away from me and becomes a dot far in the distance and then a large slowly churning almost black mass forms. This mass bends and warps and comes towards me. This is much like my real visual seizures. I have not told my wife much about this, not sure why. I see my epileptologist on Feb. 23rd. After all the hell I see you have been through, I'm not so sure I want to discuss this with her. Midwest guy my thoughts and prayers are with you. Keep the faith Birdbomb. Takecare of yourselves.
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« Reply #44 on: February 09, 2011, 04:58:42 PM »

Hi suspender. I'm sorry you are experiencing so much pain. I've started wearing a foam neck brace while I sleep or ride in the car, and it seems to be helping. I'm not sure if that would help you out or not. It might be worth a try. Mine was only $20 at a medical supply store.

The most frustrating part of this whole situation for me isn't the pain, it's all of the unknowns. Maybe I have developed some type of neuralgia and I'll just have to live with it. What bothers me is the uncertainty of whether or not there is more going on here. If some part of this device is slowly digging away at the nerve, I'd like to know before it's too late.
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« Reply #45 on: February 09, 2011, 06:46:03 PM »

Thanks for the praise but it's my staff keeps me on my toes and informed.  There is an incredible amount of pain and injury caused by vns, no one person could keep track. My staff over the past seven years has help kept this site going for individuals like you guys, in pain and damaged, and no one wants to acknowledge vns is the ONLY reason.  They are sharp, caring and know first hand.

Guess what, swallowing problems? vns, it paralyzes the nerves. The other issues you have, jaw, ear pain, very common, but you might get all these cleared up by having the parameters adjusted.  Keep us posted after you see your neuro, but feel free to hang around!  A lot of the old posts have some long forgotten help tips.
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« Reply #46 on: February 16, 2011, 08:15:52 AM »

 Grin HeyheyHey Ya'll!  Great to hear from all of ya!

It is really sad that these terrible events have brought us all together here on the net-but, I'm feelin' pretty blessed to have ya'll around!  There's a reason for everything.  I'm certainly in no mood (nor will I ever be LOL) to have a kumbya with Cyberonics or the doctors who let that happen to me, but I'm having more days of acceptance of what their magic device caused.  I can't change it, the damage is done.  I am learning to live with it, and pray I'll have good days with little depression that always comes with bad health.  My anger isn't so apparent...well...some days LOL!!!

Thinkin' about anger...I'll head on over to the vent forum regarding what my scars look like LOL!!!

Suspender & Midwestguy, I'm glad ya'll have gotten a connection here with us!  Glad to have you, and we all know your experiences although very awful for you both, may benefit others while they are researching VNS.  Thanks for being here for others!

Be well!
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« Reply #47 on: February 16, 2011, 09:16:21 AM »

Due to a scheduling change, I met with the new surgeon yesterday.  He has done some removals of the VNS, but of course the electrodes had to stay in due to the risk of nerve damage.  He told me that he can't make any promises that removal will put an end to the pain I have been experiencing, but he thinks it is worth a try.  My surgery to have the generator and lead removed is in two weeks.  He said he will just snip the lead near the connection site.  He doesn't feel that my vagus nerve is damaged because I don't have any hoarseness or voice changes.  He feels that the lead may be putting pressure on some other nerves in the neck. 

I thought of a lot of questions to ask him after I left his office, so I'm going to try to call his nurse and see if he can answer them before I have the surgery.  I rescheduled the appointment with the neurologist until a few weeks after the surgery.  If this surgery solves the problem, I'll just cancel the appointment with the neurologist.  I hope I am making the right decision here.

I'm really hopeful that the surgery will give me some relief, but I'm also trying to prepare myself emotionally for the possibility that it won't fix the problem. 
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« Reply #48 on: February 16, 2011, 07:17:32 PM »

Some hopeful news at last!.  Can I make a suggestion? Start writing down all your questions, that way you won't forget something.  I usually have a laundry list of questions before I go in for any surgery.  So far, every surgeon has been very responsive and helpful with this.
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« Reply #49 on: February 17, 2011, 09:45:01 AM »

Hi Midwestguy.
Just wanted to wish you the best of luck with having the vns removed. Several of Scott's vns caused problems went away shortly after his was removed. Also wanted to tell you to be sure and tell the surgeon to put the little caps over the end of the wires so they don't poke you and cause yet another problem. Take care, Fay (Scott's Mom)
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« Reply #50 on: February 19, 2011, 01:20:19 PM »

Dispatch, I sent you a private message asking about your symptoms. I'm not sure if it went through though. Let me know if you didn't get it.
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« Reply #51 on: February 20, 2011, 11:57:54 PM »

Dispatch, I sent you a private message asking about your symptoms. I'm not sure if it went through though. Let me know if you didn't get it.

HEY midwestguy!  I got your msg, and just sent ya one back!  I kinda disappeared this weekend and took a road trip to some dear friends home for a grill out!  Our weather was FAB till Saturday evening, but by then, we had already had the food inside and gettin' ready to eat!

Just to touch base on something in your post--you said the doc doesn't think you have vagus nerve damage because you're voice isn't hoarse.  Sounds to me like you don't have vocal cord damage which would change your voice/hoarseness, but it is possible to have vagus nerve damage.  My vagus nerve is damaged without voice issues.  Although the two are very close together, the doc should know one doesn't always effect the other.  It yanks me when docs don't tell everything and just leave patients hangin' like that.  To me it's just another dealeo that the doc doesn't want to wrap his mind around VNS being the main culprit.  rolleyes

Be well!
Cool
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« Reply #52 on: February 22, 2011, 11:21:43 AM »

I'm really worried that I'll go through this surgery and it won't fix a thing. I don't know what the surgeon will do if he discovers that the coils are too tight or pulled out of shape. Hopefully I will have a chance to ask him before the surgery.  He told me that the vagus nerve shouldn't be causing any pain, but something in there sure hurts.
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« Reply #53 on: March 01, 2011, 02:01:53 PM »

I'm having surgery tomorrow afternoon. I'll post an update as to how it goes and what the surgeon finds in there.
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« Reply #54 on: March 01, 2011, 02:34:43 PM »

Oh I hope you'll get answers and relief tomorrow.  Good luck to you.  Make sure you rest up afterward, don't overdo it and when you're feeling up to it, let us know how it went. 
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« Reply #55 on: March 02, 2011, 09:42:18 PM »

 Smiley WOW-that went fast to get the thing out!  KUDDOS!

I am thinkin' 'bout you, wishing you Gods Speed for an excellent recovery and no pain when it's all said and done!  Be well!

Cool
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« Reply #56 on: March 03, 2011, 01:16:14 PM »

I'm in a lot of pain, but I made it through the surgery just fine.  They had to cut my neck open twice because there was some internal bleeding and my neck started swelling up on the left side. They put a drain in my neck that will stay in until tomorrow. According to my parents, the surgeon said he removed some scar tissue in my neck, and there was a lot of redness and irritation. I wish I would have asked my parents to write down exactly what he said. He told them that there is no doubt that the implant is what was causing the irritation and pain.

I will just have to wait and see what happens. I'm taking some strong pain meds right now. I can still feel some tingling in my left arm, but it doesn't seem to be too bad.
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« Reply #57 on: March 04, 2011, 10:29:08 PM »

 Wink Gods speed midwestguy!  I am happy to hear you are ok and I hope things get better & better for ya!  Try and take it easy! 

OK, so, did the surgeon end up removing the leads/coils?

Be well soon!
Cool
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« Reply #58 on: March 05, 2011, 02:25:42 AM »

   
Great! When my vns was shocking my arm, it took several day for it to stop completely.  I hope the electrodes were able to be removed.


« Last Edit: March 05, 2011, 02:28:00 AM by Birdbomb » Logged

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« Reply #59 on: March 05, 2011, 10:28:18 AM »

The electrodes are still in there. He told me he was going to snip the leads as close to the electrodes as possible. So, the generator and lead came out, but the electrodes are still in there.
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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!
Cool
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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?

Cool
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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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« 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.
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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!

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

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