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Nervous about the trial.. What do I do??

Posted , 5 users are following.

linda57344
linda57344

After going thru 3 years of severe and chronic headaches I have been advised that I do not qualify for neck surgery..

I've already had fusion surgery.. Fused from C4-7.. This was done about 16years ago due to headaches, numbness and tingling in my right hand and pain in my forearm.. The fusion worked as far as the numbness and tingling and forearm pain. However, I now don't have proper control of my hands.. They kinda do their own thing.. I used to have beautiful handwriting but I can no longer control what my hand does.. It tweaks itself while trying to write.. Even trying to take my time.. I now have tremors in both hands when using them.. I didn't have this before..

I am now on more medication than ever before.. My headaches are worse than before..

I now get headaches that go from the Occidental Bone or the base of the skull, to my left temple the my left eye.. I've been complaining about this for 3 years. I've ended up with very heavy duty pain meds that don't work..

So in the past 8 months I've received 3 injections in my neck for the pain.. Guess it's supposed to be a pain blocker. Didn't work..

Was referred to get an MRI of the brain, everything is OK, a CT scan of the neck, didn't really say much, then the MRI of the C spine.. Was told that I am not a candidate for surgery.. Have several disks to are herniated, something with the sac for 3 of the disks, degenerative disk disease and Osteoarthritis of the neck..

The Orthopedic Dr felt that I was a good candidate for the Nuervo hf10 stim unit.. I had never heard of it before.. At this point I'm jumping up and down inside thinking that this was the answer to my prayers..

I talked to my pm Dr and he said there's only a 30% chance success rate and he no longer does the trials.. Thought that strange but oh well..

Now I'm waiting for a referral to go see a Dr that's 50 miles away.. This is for the consultation only..

After reading the responses, I'm scared to have this done. When I had the fusion surgery that was the worse thing I'd ever been thru and I've had a lot of surgery..

Not a lot of comments for having the hf10 put into the neck..

If anybody out there has had this done to the neck, I would sincerely love to hear from you.

Thank you ~

0 likes, 18 replies

18 Replies

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  • DJ1976
    DJ1976 linda57344

    Posted

    Contact allaroundanne she is thinking of getting the stim for get cervical.  She has a stim in her back and has been successful.

    Good Luck,

    Dee

  • shelljell
    shelljell linda57344

    Posted

    Have you looked into the Paleo diet?? I have ms and this book explains everything it's the chemicals they put in our food that's hurting us I know it's your back ( mine too ) but I can honestly say I am feeling better smile can you also see a chiropractor??

  • carol78519
    carol78519 linda57344

    Posted

    My pain doctor raves about the Nevro.  It is now the stimulator he prefers.  I have a St. Jude stimulator but for my lumbar.  It has been successful for me.   I had no other options, like you.  Pain meds, injections, etc. no longer helped.  My life was awful.  My only option was major surgery on my spine with no guarantee of success.  

    I would also get a second opinion regarding your MRI and options (surgical or implant) you may have.  I once had a neurosurgeon tell me I needed 4 level cervical surgery as soon as possible.  He said that I should be careful and not get into a car accident or fall?). I got 2 other opinions.  One suggested a cervical traction (at home - you attach it to door jam).  I tried it and the pain, numbness and tingling went away in 2 weeks.  It was an irritated nerve.  That was 6 years ago and I'm still fine.  

    I guess what im saying is I would get another opinion (or more) on both your surgical options and stimulator options.  The good thing about the stimulator trial is, if it doesn't help, well at least you know.

    i used to work for Boston Scientific who also makes the spinal cord stimulators so I am familiar with them and their success rates.  I had a co-worker who used to fall asleep at his desk because of all the pain meds he was taking.  He then had the stimulator implanted and was a different person!  

    The St. Jude I have was originally only for nerve pain.  This year they had an upgrade available (software only, did not need surgery) and it now helps both nerve and arthritis pain (which I have).

    if you have anymore questions, please feel free to ask.

    • DJ1976
      DJ1976 carol78519

      Posted

      Carol.  My St. Jude's has not worked as intended since it was put in on 3/2. This is my only option.  Have had multiple back surgeries.  No more can be done.   If this one doesn't start working soon, I do not know what other options there are. 

    • linda57344
      linda57344 carol78519

      Posted

      Hi Carol, I don't really have options other than the Nuervo.. The Orthopedic has already told me that I am not able to have surgery.. I've already had 2 neck fusion surgeries.. I take 2 very heavy duty narcotics for pain and also have another that I'm limited to 18 pills every 25 days..

      I have had injections, chiropractic adjustments, over the door traction, massage, heat and ice, neck braces.. I've done it all..

      Just felt this stim thing is the way to go.. Like right now, I've got a headache so bad, I could cry. The pain is at the base of my skull, goes to my left temple then my left eye.. My eye feels like it's bulging out of the socket..

      I don't want anymore pain pills, I don't really want another surgery on my neck.. That was the worse experience of my life..

      I realize as with anything there are no guarantees.. But feel I must try something.. I've been on pain pills for 20 years and I worry about the long term effects of these medications..

      I feel like I am stuck between a rock and a hard spot..

      I don't have a date yet to see the Dr about the trial.. I know that he does it. There was a patient at my Primary Care Dr's office that had it done and he was happy.. I was told this by the receptionist who is a friend of mine..

      My Primary Care physician was very enthusiastic about the trial and very familiar with the process.. He encouraged me to have it done.. He had also advised me to not let anyone do anymore surgery on my neck..

      The pain Dr was all for surgery.. He had asked a couple of times if they could do surgery.. I had already told him NO..

      So, I think I'll see what this Dr has to say,hopefully soon after and make a decision then..

      I need to get some sort of relief.. I have no real quality of life as these headaches just come out of nowhere.. A headache has lasted me up to 5 days with all medications.. I don't vomit, have an upset stomach or anything like that.. Just awful pain in 3 places.. That's another question for the Dr, is this Stim unit going to get rid of the pain in my left eye and temple..

      So, prayers this can be the miracle that I've been looking for..

      I wish you so much luck in the future with the Stim..

      Keep me posted and let me know how you're doing, please..

      Once again I thank you so much for your help..

      Linda 💜

    • carol78519
      carol78519 DJ1976

      Posted

      I'm so sorry that it's not working for you!  They've tried reprogramming I'm assuming?  How many times?  Is it the same tech?  If you've had the same tech, wondering if that could be the problem...maybe another tech could give it a try.  

      Mine me is helping me but I have come to the realization that it needs to be tweaked every couple of months.

    • DJ1976
      DJ1976 carol78519

      Posted

      I have had 3 programmings since 3/2 and tomorrow it will be #5.  I had another rep program  the trial and is no longer there.  There are no other reps.  I am stuck but there is just not that click there.  I always feel he is in a rush.  Last time he said that maybe there is another reason other than the stim.  Took offense with that.  Trial,was with the 2 leads now the implant is the paddle.  Big difference.  I too think I need a fresh pair of eyes.  Don't think that is in the cards.

      We shall see what tomorrow brings.

    • linda57344
      linda57344 DJ1976

      Posted

      Hi DJ, I'm also sorry you're having these difficulties.. I don't know if you have the Nuervo or not.. I also don't know if everyone is from the US or if you're across the pond..

      I appreciate everyone's honesty about what they're going thru and must say this is causing me great concern as to if I want to do this or not.. But at the same time I'm out of options..

      Thank you for your feedback 💙

    • linda57344
      linda57344

      Posted

      Us your stim in your back or the neck?? I'm having it put in for headaches.. I've seen and read a lot of responses about the back.. Even the video talks about the back.. Nothing about if it relieves headaches..

    • DJ1976
      DJ1976 linda57344

      Posted

      Hi Linda.....My original trial was the NEVRO and it did absolutely nothing at all.  Everyone was totally baffled.  Then I went to BURST from St. Jude's which is now Abbott.  My trial was successful but the implant so far has seemed to be working as well.  The problem, for me as I see it.  Trial uses 2 leads and battery.  Surgery implant is a paddle and battery.  You cannot use the program from to the other.

      I, too, am out of options.

    • carol78519
      carol78519 DJ1976

      Posted

      I would take offense to the rep saying it may not be the stimulator either! 

      Have you talked to the doctor regarding the lack of success in the permanent?  And also that the tech seems to always be in a hurry?  

      Also, have they looked at the implant under fluoroscopy?  Perhaps some of the leads have migrated?  I hope the doctor would want to check that since the stimulator isn't working for you.

      If the implant looks fine, then maybe he can call the company and put some pressure on them - send another tech out from another location to take a look at it.  The doctors would have clout with the SCS company.  Hopefully he can be an advocate for you.

      A lot of money was spent for this implant and they should be looking at all options to get it to work for you.  

      Good luck - let me know how it's going!

    • carol78519
      carol78519 linda57344

      Posted

      Is the pain doctor that wants you to have the surgery the same one that would do the trial?  Do you feel like he's dragging his feet on the trial?  If so, can you get a second opinion/another doctor that would do the trial?

      it sounds like you've had enough surgeries.  Your head pain sounds just awful!!  Enough is enough!  

    • DJ1976
      DJ1976 carol78519

      Posted

      Carol I know how much this was as I just got a copy of the bill.  Thank God I only had to pay my deductible. I see the surgeon later this month.  Will wait till then.  The rep is getting stressed out and said he may have to do a clinic setting.  He has no help.    Would not like that.
    • carol78519
      carol78519 DJ1976

      Posted

      I don't know what the rep meant when he said he may have to do a clinic setting.  I do know that my reps told me that they have to be in a clinical setting when they reprogram.  Whether it's in a spare room at the doctor's office or even in the lobby of a hospital!

      Do you feel like you've recovered from the actual surgery pain?

    • DJ1976
      DJ1976 carol78519

      Posted

      Recovered from surgical pain thank goodness.  He meant clinic in terms of a specific place walk in, sign in and wait much like going to a lab to get blood drawn.  Dee
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