Looking for feedback on spinal stimulator

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I’ve gotten caught in the washing machine of docs, tests, procedures,- only to be told to either try the spinal stimulator, have 2 or 3 fusions, or live with  the symptoms. I understand docs aren’t majicians- but I’m just trying to make the best decision for me at my age. I’m a fairly active 63 yr old woman in good physical health- except for this chronic nagging back that leaves me with a constant “ pain in the butt”, groun pain and a numb leg. Tried  endless rounds of oral steroids, nerve meds, pain meds, NSAIDS, 3 spinal injections, 1 hip injection , 1 SI joint injection. They are all ineffective or have temporary effects. Every other person- be it a patient or other physician- says try everything before succumbing to a fusion. I’ve not read many high remarks concerning stimulators either. What do other people do? 

I’m not a drinker- but have started taking a glass of something every night and wouldn’t be against a form of marijuana. Any comments or advice? My husband is super healthy and just grunts when I mention any of this!!!!

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2 Replies

  • Posted

    What do your tests ( MRI, X-rays) show?  Do you have weakness along with the numbness in that leg?  Do you have any bowel or bladder problems? The numbness is a sign of persistent nerve irritation and is concerning because irritated nerves can become deadened nerves which is why I asked about the weakness. The bowel and bladder issues are the problems that will basically buy you the fusion.  You can't mess around any more with nerve blocks or steroids if you have problems with your bowel or bladder because that can also become permanent and you surely don't want to have a colostomy or be catheterizing yourself. So, if you can put aside the BIG worries of bad nerve entrapment leading to leg weakness, bowel or bladder dysfunction and you are just looking at a sore back I would listen to all the people who told you to try everything else before you go for surgery. I know the surgeons like to parade out these happy people with their tiny scars who went home the same day, but I could parade out the same number of their failed surgeries who came to see me.  You can always go have surgery, you can't undo it once it is done.  As for stimulators, I have often said it on here-- you are looking at a forum where people come to complain about their experience. People don't go to forums to say how great things are LOL.  Except for me, I had a bit of a wobble in the beginning but I am really happy now with one of mine.  I have a St. Jude/Abbott in my lower back and I have no pain anymore.  If I do get pain, I turn it up and by the end of the day it is gone and I turn it back down to my base level. I have a Nevro in my neck that I am not as happy with.  I had a great trial but not I really don't think it has ever worked since they put it in permanently.  It isn't like the St. Jude in that you can turn it on to tingle mode to see where it is covering.  I have tried turning it off and my neck feels the same, so to me I am convinced they never hooked it up....  In any case, don't take the horror stories on here to heart, these are a sampling of worst case scenario.  It is good to be fully aware and informed, but don't let it turn you off to a good technology that might work well for you.  Take a trial run which is an easy week, they will put leads into your epidural space, much like having an epidural during childbirth.  These are then attached to a generator that you wear outside your body on a belt that the representative will program for your pain pattern.  You go home and are told not to shower, not to move around too much so you don't dislodge the leads and to let the reps know daily how you feel.  They can change the programming with you over the phone.  You should get a decent idea if the stimulator will work for you or not.  I have no idea what happened with Nevro and me, but St. Jude and I worked well!  

    Lynn

  • Posted

    Hello Beth,

    It is good that you are asking before you have the Stimulator done.  I had it done in February of this year.  When I was introduced to the Spinal Cord Stimulator, it sounded good to me.  I then had the Temporary one put in, though it didn't really help, by the time I had it taken out, I realized that it did help some with my upper back and some lower and my left leg. Well, I decided to have it done and once the temp was out, a day later my pain was unbelievable! When I went back to the Dr. about a week later and the nurse informed me that once it was taken out, my pain would come back worse, and since I was feeling it, I told her to hurry up and schedule the surgery.

    Well, after having it, I had issues and had to have it programmed.  I did it a couple of time, then I felt the vibration wasn't helping me, I had pain in my left leg and it was not helping me, so I gave it some time to work and now as of today, I hardly use it except when my pain is at 8-9 in pain. I now use it every now and then before the vibrations made my left leg, feet and my stomach and my side hurt too much so I now use it on a lower scale.  I have gone to sleep with it on some time.  All I am trying to say everyone has different issues yours may be different and work for you.  When I speak to my Dr. he told me anytime I want it out that he will do it, but I am scared because the pain might be worse, so right now I am stuck, but I do use it from time to time, just not daily.

    I wish you well, and I hope things work out for you, just remember my issues may not be your issues and it might work fine for you. PS. I have Degenerated Disks and Arthritis in my back, mainly my lower back and other than pain pills this SCS is the only thing I have had.

    God bless and take care, I hope this helps you some.

    Dee

     

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