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    Spinal Cord Stimulation Implant for Severe Chronic Shoulder Pain
    KeepOnFighting posted:
    Hi Everyone, I'm 31 (almost 32 y/o)B& have had 10 shoulder surgeries (6 on the left, 4 on the right) most of them have been major surgeries including bone grafts on each shoulder & a partial replacement on my left. The bottom & back part of my shoulder sockets didn't form correctly so both shoulders would constantly slip in and out of the joint. Although my shoulders are pretty stable now I have been dealing with severe chronic pain in both shoulders. My pain mngmnt doctor tried a series of stellate ganglion blocks & although they did help they did not provide the cumulative effect that we had hoped for. So his next recommendation is to try a spinal cord stimulation implant. I believe he's planning on using Boston Scientifics Smooth Wave implant & will involve a 7-10 day trial before doing the permenant implant. My question is I know these implants are often used for back pain but has anyone had this implant done for shoulder pain and if so would you recommend it? Also, I would greatly appreciate any advice, information, what to expect or personal experiences with the stimulation implant just in general.

    Thank you so much in advance for any help anyone can provide!
    Suzie_Q_76 responded:
    Hi Fighting,

    I am so sorry about your struggles. I know how frustrating it can be, and I am so proud of you for not giving up. I suffer from nerve damage to my back/leg and I have the Boston Scientific stimulator. I also have neck problems and nerve pain associated with it that shoots through my shoulder and into my arm. So, my views are limited, but I can offer at least something. I am 35 and I've had my stimulator for a 18 months.

    Getting the stimulator was one of the best things I ever did; however, I have a love/hate relationship with it. There are things the material will not tell you, and the doctors will tell you it's impossible. Other people I've spoken to, that also have the stimulator have had the same experiences, though. So, I know I'm not crazy:)

    My pain levels went from a 10 to a 5 after I received the implant. I still have the nerve pain, but it is livable. It does help my arm if I turn it up high enough, but if you turn it up too high, it puts a severe strain on your body. I wasn't able to walk or get out of bed before. Without my implant, I wouldn't have a life. Lightning storms will sometimes cause a jolt through your body and I can always tell when they're near. If you forget to charge it, once a week for a few hours, it takes twice as long to feel the relief again. So, if it's been off for 12 hours, it'll be 24 before you start feeling better again. Your tastebuds will change. Your vision will change slightly, but over time it evens out and you won't notice it. Most of the people I've spoken to had to have it removed after 1-2 years because it no longer provided relief.

    There are a lot of medical limitations with the stimulator. MRIs are out, and doctors can be really mean about the limitation. I needed an MRI and when I couldn't have one, the doctors (3 of them) refused to run any other type of tests and refused to treat me unless I had my stimulator removed. I just want you to be prepared for that.

    What I did to figure out if it was helpful or not was to go off my pain meds during the trial period. The doctor and the Boston Scientific people will tell you not to do that, but it was the only way for me to learn if it was going to help me. When it worked, I went ahead with the permanent stimulator. If you haven't had a psychological exam yet, your doctor should refer you. Most insurance companies require it. They want to make sure that you are mentally prepared for the limitations.

    I hope this helps you some. My family and I agree that it is the best thing I ever did, after many failed procedures. It does come with its own negatives, but that happens with everything.
    KeepOnFighting replied to Suzie_Q_76's response:
    Thank you so much for your response Suzie_Q!

    I did have the psychological evaluation she explained more of what the procedure entailed but they didn't really inform me of all the limitations that come with it other than MRIs are out. What other limitations are there that I should know about?

    I'm scheduled for the trial implant on Oct 11th. Although i believe i'm making the right decision i'm really nervous about it since he will be messing around near my spinal cord along with reading about the possible complications (knicking the spinal cord causing CSF to leak, possible pneumothorax since they'll be implanting it higher up b/c it's for my shoulders, possible bleeding in or near the spinal cord causing temporary to permanent paralysis, etc.). If it were a shoulder surgery it wouldnt be so bad since I've had 10 of those but this is a totally new procedure for me.

    Did you run into any complications during the trial & permanent implant procedures?

    I've also read in one of the discussions & talked w/ a friend of a friend & they both said it took about 5-6 months to fully appreciate the implant. The mutual friend I talked to said that at about the 3 month mark she was so fed up with it she wanted it out. Her implant was through Medtronics though & it was implanted 3 yrs ago. I'm really hoping the Boston Scientific implant as well as possible advances in the past 3 yrs will make the adjustment smoother. How long did it take you to adjust to the implant? Did you ever "hit that wall"?

    She also mentioned that the trial was completely different than the permanent implant. She said she was miserable during the trial due to the leads being external. Did you have any issues w/ the trial?

    Also, how did it effect your taste buds? Did food taste different? What kind of vision changes did you have...blurred vision? How long did it take to even out? Did the doctors give you any reason or indication as to why they were being so mean just because you had the implant?

    Sorry for so many questions. I just want to be as prepared as possible as to what I should expect.

    Thank you so much for your help & advice!
    Suzie_Q_76 replied to KeepOnFighting's response:
    I'm sorry I haven't responded sooner. I'm so glad I could help, at least some. I went into it with little information about it. As it turns out, it worked well for me. You're smart to get as much information as you can.

    Other limitations, off the top of my head, are walking through security scanners at shopping malls, Wal-Mart, Target, etc. It can cause the stimulator to surge suddenly. I was in Target last March and I was severely shocked. I had to go to the ER to make sure it was still in the right place. Luckily, it was okay, but it took several days to recover. You won't be able to go through an airport scanner at all. They will issue you a card that says why and TSA will have to pat you down, unfortunately. I carry mine in my wallet in front of my driver's license. That way, if I am ever unconscious, they know about it. They will tell you to turn off the machine with your remote control before walking through the scanner, then turn it back on. I will say that the times I have forgotten to turn it off, I didn't receive a surge. They'll recommend driving with it off, which can become obnoxious. It's a surge issue, as well. I don't turn mine off when driving and I've never had a problem.
    No worries about all of the questions. I'm glad I can answer them. I wish someone would have told me before I had mine, but I was so miserable, I just wanted to get rid of all the pain J . If I miss anything, please let me know.

    I didn't have any complications with either of my surgeries. I was concerned about CSF leakage, as well. I didn't have a risk of pneumothorax, because placement for me was lower lumbar.

    I will say the trial is very miserable. The external leads are covered by thick bandages and thick tape. It was hot, you can't get it wet, etc. The surgical pain is difficult as well. It will depend, though, on what medications they give you. I needed an adjustment at that time, so I can't blame the surgeon or the implant. Also, you have to keep your back as straight as possible. If you sleep on your stomach or back, it will be tough. I had to sleep on my side, and still do. That took a big adjustment. The leads are carefully taped down, so you probably won't have any issues with it. I didn't.
    The permanent implant surgery was a lot better. The worst part was keeping my back straight for 6 weeks. No twisting, bending, lifting, it can be very frustrating. What got me through was knowing I was going to have some normalcy back.

    It took me about 3-4 months to fully adjust to the implant. I kept forgetting to charge the battery, which I still forget sometimes. My vision and tastebud changes were temporary, thank goodness. That took 3 different adjustments by Boston Scientific. Once we got the stimulator adjusted properly, everything returned to normal. Food didn't taste right, or it had no taste. Vision was harder to deal with, until it returned to normal. I felt like everything was moving, like being on a shaky roller coaster. And, for the first few months, if I didn't have the setting on the remote right, it would do that. I haven't had a problem with it in over a year, though. Eventually, it all settled, and it really only took a few months, if that.
    I have heard from a lot of other patients who had a stimulator that after a year or two, they had it removed. It either didn't work, or they just hated it. I have not reached the point where I hate it. In fact, I'm fighting a surgeon who wants to remove it. I'm keeping it, though. For me, it's been worth it.

    The doctors that I've dealt with insist on using an MRI, and some have refused to treat me unless I have the stimulator removed. It really depends on the physician. I have found that doctors rely on MRI for just about everything, especially soft tissue damage. If it's not an option, they get very frustrated. On the other side, some doctors found the challenge interesting. (Ran out of room. More to come)
    Suzie_Q_76 replied to KeepOnFighting's response:
    (Reply continued...)
    If you haven't decided on where to get the battery implanted, then I would like to throw in my 2 cents. I have mine in my rear end. The doctors said it was like sitting on a wallet. It isn't. It's anchored to my pelvic bone, and sometimes it hurts a lot. I sometimes feel a sharp stab there. Other times, it aches like crazy. When I had my surgery, though, I had just lost 40 pounds. I was 120 pounds, so that was the best place to put it for padding. Otherwise, you could see it sticking out of my back. I would still get it in the same spot if I had it to do over, but I want you to be prepared for it. It will cause some additional discomfort. I have more problems with the battery pack than I do the implant itself.

    I hope I answered everything and helped! I like my Boston Scientific stimulator. Oh, have you received the DVD? On their website, they have one that has usage and limitations.

    Again, let me know if I missed anything, and please let me know how the trial goes, if we don't talk sooner!
    Suzie_Q_76 replied to KeepOnFighting's response:
    Hi Fighting!

    I know your surgery is tomorrow,and I've been thinking about you. I will say a prayer for you.

    If you get a chance, please let me know how the trial is going. If you come across anything that concerns you, post and I'll help any way that I can.

    Good luck!
    KeepOnFighting replied to Suzie_Q_76's response:
    Hi Suzie_Q,

    Thanks so much for your prayers.

    Surgery went fine, no major complications so far. They inserted the leads into my upper back into my cervical spine. It's extremely sore which is to be expected & I have pain meds to help. But they did insert 2 leads to try to control the pain in both shoulders, not just my left shoulder which is good.

    Unfortunately the main lead for my left & most painful shoulder moved while I was in recovery as they tried to sit me up. & since it moved the signal isn't nearly as strong as when they tested it in the OR. But as long as it doesn't move anymore I'm still getting some signal there as well as enough signal in my right shoulder to be able to decide if this is going to help enough to make it worthwhile to do the permanent implant procedure.

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