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Author Topic: I am experiencing pain that seems to be centralized around the lead/coils  (Read 46594 times)
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Birdbomb
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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!
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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
Birdbomb
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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!
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"I reckon it's again my turn to win some or learn some..." Jason Mraz

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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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"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!
midwestguy
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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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"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!
Dispatch
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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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"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
midwestguy
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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
Birdbomb
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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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VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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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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midwestguy
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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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VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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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!
Cool
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"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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« 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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Electrodes are in me for LIFE!
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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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midwestguy
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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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"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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« 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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Birdbomb
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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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Electrodes are in me for LIFE!
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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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"I reckon it's again my turn to win some or learn some..." Jason Mraz

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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

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
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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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