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Monday, April 26, 2010 sheila taylor, Community Member, asks

Q: Spinal stimulator implants for chronic neck pain

My doctors have suggested a spinal stimulator implant for my neck & shoulder pain that I have had for 3 years now. The neurosurgeon will not do surgery on my neck because I also have fibromyalgia & he said his success rate with fibro patients is very slim & he isn't willing to try with me. I hear successful results in people with leg or back trouble; however I have not heard from anyone who had it for their neck. Please help.

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Answers (6)
Dana, Community Member
4/26/10 8:09pm

Hi Sheila.

I am scheduled for a spinal cord stimulator trial in June. After researching, etc. I decided to attempt the trial since I've been in the 7-8 pain range for the past 2 years with neck/shoulder/back injuries: even with 50 mcg of Fentanyl, Percocet for break thru, muscle relaxers, anti inflammatories, Lyrica for Fibo, and the list goes on.

 

I spoke with several folks via the communication program with the manufacturer ANS/St.Jude. I had not been able to find any others that had neck issues with the stimulator to speak with regarding their experiences/relief with the product. You should be able to get connected with a representative through your doctors office and hook up with individuals that can share with you.

 

I feel the trial is worth the minimal risk to see if it will help. Most of the input I've received leads me to believe it will either help tremendously or be of minimal help thus not worth the risk of permanent installation. If there wasn't an option to "try it before I but it", I doubt I would be making the attempt.

 

Good luck!

Dana

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sheila taylor, Community Member
5/11/10 10:57pm

Hi Dana.  I had the trial last week & unfortuneately, they didn't get the placement high enough to get any results in my neck so They want to do another trial & use 2 leads.  I would suggest that you ask your doctor to use a 2 lead trial so it can be set for multiple areas.  I am also on alot of the same meds as you are & they did tell me that if it works, I may be able to come off some.  theat would truly be a blessing.  My doctor said he has placed scs implants for neck pain & they have been successful.  The couple that were not was because the patient didn't like the sensation it sends out.  I will let you know more if I redo the trial before you go in June...thanks, Sheila

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Dana, Community Member
7/ 1/10 11:54pm

Ola Sheila,

 

I'm sorry to report that the trial was a failure for me. I enjoyed the "tingling" the leads put out and it helped some just from the relaxing sensation.

 

Unfortunately, every time I moved, the output level changed to either absolutely nothing or massive overdrive that I had to turn off. I tried it for 7 days with 4 leads and fine tuned the controls 4 times trying to get it to work. Obviously, it did work out.

 

I discussed the possibility of another trial with the rep since one area was missed and the one on my head along the occipital ridge came out too soon & I only  got to test drive it for 6 hours. The rep didn't sound too optomistic which surprised me since she is a very positive person. I'll discuss it with the doc in August when I see him next. Due to the expense, if he isn't more optimistic about it working, I won't make another attempt.

 

Let me know how things are going with you. My fingers are crossed for you!

 

Depressed but still searching,

Dana

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sheila taylor, Community Member
7/ 5/10 6:08pm

Dana,

 

I have been trying to get a second trial set up but my pain clinic is sooooo unorganized.  Not only I think that but also some of my friends that are nurses at the hospital say the same thing.  I have been trying for over a month to get it rescheduled & the nurse called the other day & said that she had down that I wanted it in Sept.  Duh...why would I wait that long to see if something works!  I had my referring doctor try to get me in at another pain clinic so that is what I am waiting on.  They only put 1 lead in me & it didn't even reach into my neck where the majority of my problems are so it was a total failure for me & I, like you, was very depressed.  I hope something works out for you because it is not any fun at all to be in pain all the time & not be able to do alot of the stuff you use to do.  well, really not even feeling like doing it.  Keep me informed & I will do the same...lots of prayers to you.

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Jim, Community Member
5/23/11 10:53am

Hello my name is Jim and my doctor has scheduled a trial for my neck. I have had 13 surgeries in the past years. I have from c3 to c6 with a plate and if that not enough i have l5 s1 with an enter body cadge. I take so many meds the doc has told me that's enough to knock out an elephant out. I take 100mg duragesic and my body needs more. I am scared that I am turning into a drug addict. Does anyone have any advice to help?

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Huskerdu, Community Member
4/26/10 7:46pm

Hi, all I can tell you is what my neurologist told me about my spinal condition which has led to chronic regional pain syndrome, which I guess may be somewhat similar to fibro, but I'm not an expert so I'm only assuming things from what I've read and been told.

 

 

Anyway, my neurosurgeon told me that a spinal stimulator would only be useful for the leg pain that my spinal condition causes and not the back and neck pain. Whether this is true or not I don't know. It seems a bit odd to me.

 

All I can suggest is seeing a few neuros for other opinions regarding your problem.

 

All the best with it and I hope you get some relief as, along with my back and leg pain I also get neck pain, and it's murder! Cheers (sort of Smile

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javaliz59, Community Member
5/31/11 11:00pm

Yes, I have had my Neurostimulator in place for 5 years now for treatment of cervical pain C6 to C3.  I am 51 y/o with severe osteoporosis in my spine as result of undiagnosed/untreated Celiac disease for 30+ years.  The wires run from my implanted generator in my right hip up my spine to C6 to C3.               In answer to your question, my Neurostimulator has been life changing.  It does not treat the pain nor cure what caused it.  Rather it tricks the body so you don't feel the pain.  For example, when you stub your toe, you feel the pain in your toe, but actually your brain felt the pain.  Pain receptors send the pain stimulus from your toe to your brain and then back again.  It's like a complete pathway.  The Neurostimulator works like an external TENS unit.  It "ties up" the first part of that pathway, much like a phone line (without call waiting of course).  So when your Neurostimulator is on, it keeps that pathway tied up so the pain can't get through.  This is an oversimplified explanantion, but hopefully explains why it works.  I understand it works better for some than others.  If you're thinking about it, I would advise trying a TENS unit first.  If you get good relief, you may be a candidate.  I would strongly advise a referral to a Pain Management Specialist that's experienced with Neurostimulators. 

 

I should mention that the actual implantation is v-e-r-y uncomfortable. My first procedure was in May 2006 and they had a very difficult time fitting the disc between my cervical vertebra as they're compressed together.  Two surgeons, alot of pushing, you get the picture.  And yes, they wake you up half way through the surgery to test the placement of the leads.  Here's the lowdown: 1. It's probably good I didn't know the extent of what I was in for ahead of time (I may have chickened out), 2. unfortunately I remember it (seriously, if any anesthesiologists are reading this, I have one word: Versed),  3. If I could have reached the doctor, I would have decked him.  4. would I do it again?  yes, one painful procedure = 5 years of relative relief.  Three days after the procedure, my stimulator stopped working.  X-rays revealed that the leads had worked themselves loose.  Fortunately for me, it was at the site of my generator and not in my cervical spine, so that was a relatively easy fix. 

 

Once you have your Neurostim placed, remember, no more MRI's (self explanatory) and no more quick trips through airport security.  You will be getting up close and personal with airport security.  Also:  let your family, friends and co-workers know about your neurostimulator.  Should you ever have a medical emergency and EMS is called, and your Neurostim is turned on, it looks just like Atrial Fib on an EKG!  yikes!!

 

P.S.  The internal batteries in the generator seem to last around 5 years depending on use.  My battery finally died and I've been without my Neurostim for 5 weeks now.  I'm really missing it!  I'm getting my new battery tomorrow (along with cervical facets, etc) and will be very glad to have my old friend back.  

 

Good luck and hang in there. 

 

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Christinesmcr, Community Member
10/19/11 11:56am

I am sch'ld for my trial next Thursday & am extremly nervous since this is my last resort!!! Due to a accident I had 3 1/2 years ago I have 5 herniated disks in my neck along w/ Fibromyalgia. I've had every injection, extensive physical therapy, & a double discectomy & fusion at C5 & C6. I also get SEVERE migraines from my occipital nerves... I'm on several medications but still in a incredible amount of pain AT ALL TIMES!

Does anyone have any advice for me? Or have you gone through anything similar? I just turned 36 and am tired of being bed-ridden!!!!!! I want to be the mother & wife I use to be, or I'd even take half of what I use to be!

Thank you, Christine

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DEE, Community Member
5/12/12 11:49pm

hI i AM SO SORRY TO HEAR ABOUT YOUR SITUATION, i WAS IN A CAR ACCIDENT 3 AND HALF YEARS AGO AND HAD SEVERE WHIPLASH INJURY, i NOW SUFFER FROM CHRONIC NCECK PAIN , SHOULDER AND ARM PAIN, i HAVE HAD SEVERAL PHYSIOS AND ASSESSMENTS DONE AND MRIS DONE. i WAS ON T3 FOR YEARS WITH FLEXERIL COMBO PLUS TRAZADONE AT NIGHT AND ANTIDEPRESSANT. mY KIDS WOULD SAY --OH MOMMY CANT COME BECAUSE OF HER NECK SHE IS SLEEPING AGAIN....NEEDLESS TO SAY I TRIED TO STOP ALL THE MEDS, NOT A GOOD IDEA WITHOUT CONTACTING DR , BUT I WEANED OFF AND TRIED REGULAR PAIN MEDS WITH LITTLE SUCESS. i AM NOW A NERVOUS WRECK , I DONT WANT TO GO OUT ANYWHERE i HAVE GAINED 30LBS FROM BEING INACTIVE -WHICH DOES NOT HELP MY DEPRESSION, AND I MISS PLAYING WITH MY KIDS. i AM NOW TAKING 10MG VALIUM IN MORNING AND 10MG VALIUM AT NIGHT WITH 300MG NEURONTIN  3X DAILY AND ANTIDEPRESSANT.  I AM VERY GROGGY AT NIGHT BUT I TRY TO SPREAD THROUGHOUT THE DAY, PAIN IS STILL VERY BAD AND SEEMS WORSE WHEN IT RAINS. aNYWAY i HAVE BEEN LOOKING UP SCS AND IMPLANTABLE PAIN PUMPS TOO I WANT TO GET MOVING AGIAN , i AM GOING TO HAVE TO GET MY WEIGHT OFF AS WELL i AM SURE BEFORE SOMEONE WOULD OCNSIDER THIS PROCEDURE. i AM FROM CANADA AND LETS SAY IIT IS NOW WIDELY PRACTICED HERE SO I WOULD HAVE TO GO TO THE STATES FOR IT ...WHAT DO YOU THINK.....GOOD LUCK

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Christinesmcr, Community Member
10/29/11 6:23am

Well, I am on day 3 of my trial w/ the stimulator & am extremly upset to say that things are not looking good at this point!

1. I didn't know that just the trial was going to be SO painful! The nurses, Rep., & my Dr. only told me afterwards that "the neck area is EXTREMLY SENSITIVE & has many nerves that make this more painful than other areas of the spine." I guess they didn't want to scare me before hand???

2. It seems that something bad is going on with a nerves, or nerves, on the right side of my head. It feels like I have a knife jammed into my skull behind my ear when the stimulator is NOT on, & when it IS on it feels like someone is twisting the knife!!! I had to meet the Rep. at the hospital today so he could re-program the stimulator to different areas & it is better, but not helping my pain as of yet.

3. Im also experiancing some numbness, tingling, & weakness down both my arms? Not sure why but Im hopeing it's just from the swelling from the procedure & will go away once I heal or once this thing is removed? It's more severe in my right arm and I can even feel it in my thumb! NOT GOOD!

Although things are going so bad right now, Im still praying that things will change!!!!!! I will update later... I hope my experiance will help out someone in the future!

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sheila taylor, Community Member
11/ 1/11 5:42pm

Sorry to hear about the way things are going Christine. My trial did not go well last year; they didn't get the placement right so I couldn't tell if i would benefit from it or not so I didn't have it placed until I get the nerve to try it again.  However, a second pain management dr. didn't think it was a good idea because proper placement in the neck/cervical area is so hard to achieve.  My trial was not too painful but I felt like a bumble bee "buzzing" as the thing vibrated tho.  Will pray for relief & an answer soon.

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Christinesmcr, Community Member
11/ 2/11 12:50am

Sheila-

Thank you so much for your info & prayers!

I had the stimulator removed today, THANK GOD! (That was pretty darn painful too!) I'm still having the problem with INTENSE pain on the back right side of my head beheind my ear, weakness in both arms (but mostly the right), & I also have a 'burning/on fire' feeling in my right ear, right arm, & thumb. My Doctor said I have a irritated nerve behind my ear & it is causing ALL of that!?!?!?! He says it SHOULD go away BUT could possibly be permenant nerve damage! UGH!

Im very upset that this didn't work for me!!!!!! I was SO hopeful & prayed an absurb amount of prayers, but I guess it just wasn't ment for me! Onto the next step...

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Christinesmcr, Community Member
11/ 2/11 12:56am

Sheila-

I for got to mention this... You said that it "felt like a bumble bee "buzzing" as the thing vibrated." When I had mine turned on it felt like bugs crawling under my skin!!!!!! YUCK! Im not sure how that is "pleasent" or "massaging" feeling?!?!?!?!?! But I guess it's different for everyone???

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JMW, Community Member
7/31/14 12:26am
I had a stimulator implanted 2 years ago in my neck for pain. This was after many nerve blocks an injections, many medications that the side effects of the meds were worse than what they were supposed to treat. The trail period was barely a little over a day, this Is not enough time to make a decision to implant this unit. They may have lengthened the time now. This was supposed to be the answer to the neck pain and hopefully the migraines. It was not! I was told by a St Jude stimulator programmer after my unit was reprogrammed for the 4th or 5th time that insurance companies were not approving the unit any more for neck implantation. My neuro surgeon also stated the the neck area gave the leads to much movement after my pain doctor requested the leads to be relocated. The neuro surgeon would not relocate them. I now have an implant that does not help the neck pain or migraines and cannot have MRI's any more. This surgery is not an exact science and nerves are not in the same place in everyone's body. I now am on no pain meds and in pain most of the time. Please really think long and hard and get more than one opinion. Pain management is a multi million dollar business unfortunately, the patients are not the Doctor's main concern. It's the quantity of patients and procedures they can bill and referrals to surgeons. There maybe some pain management doctors that really want to help but it's not what I've experienced. I wish you the best. Reply
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By sheila taylor, Community Member— Last Modified: 07/31/14, First Published: 04/26/10