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Pain Management is discontinuing my treatment due to continued pain 5 months after SCS

I had my SCS implant almost 5 months ago but I am still having horrible hand pain where I had surgery after a car accident. I developed RSD throughout my hand, arm, and neck which is why I began treatment with a pain management center. I finally had the implant which helped my arm for the most part but my neck continues to hurt and my hand has not improved. The did a trial facet (sp?) in my neck which helped but I wanted more info on the permanent nerve burning first. However, my hand was hurting so bad and after waiting almost 2 hours to see the doctor, I had to leave and reschedule. I left a message on the nurses voicemail explaining that I had to get back home (which is 1 1/2 hours away) but was upset with the whole situation as I was leaving my message and I'm sure they noticed. I got a call later saying I needed counseling and biofeedback to cope with my hand pain since they have done all they can for me. Unless I did this right away, they were going to refuse to see me and treat me anymore. I don't know what to do since I've tried everything in the book ( PT, OT, meds, casts, injections, etc.) and went to the pain mgmt. place as my last resort. If I am in so much pain is there really no other option than to live with it? I still can't use my hand without dropping things or making it hurt worse when I do normal daily chores and activities.
I've read so many posts that portray such a great relationship with their PM and the continued exploration for pain reduction/solution. Am I missing something here or is this normal practice when they can't find a solution? They don't believe in pain meds beyond Lortab but those just don't work as well anymore. I'm getting the feeling they don't believe my pain is real but I don't know how else to convey my pain. Don't get me wrong though, the stimulator IS working for a lot of the nerve pain I had throughout my arm.
Has anyone ever experienced anything like this? If so, what did you do? Is this normal? I feel like I'm going crazy and they are just reinforcing that. The SCS was supposed to make everything so much better but with the continued infections I haven't had much time to experiment with my Medtronics rep on better settings even though the PM people feel I have. I'm at a total loss :-(. Thanks for any input anyone might have or how they coped with a situation like this. Sorry for such a long drawn out post!!!


  • I'm so sorry! This just sucks! I really think some PM docs think that once you have a SCS, all your troubles and pains would be gone. They assume its going to fix everything, when in reality, it's just one more tool to use. Individuals that get one and can get off all meds, therapy, etc., that's great, but that's not everyone. The percentage of pain patients that get a SCS and can drop everything else, are few and far between. Not to say the stim doesn't work, but it doesn't normally take all of your pain away.

    I don't know what to say! I do feel that I have a good relationship with my PM, but when I told him I was getting a SCS, he was not too thrilled, at all. He's got me scheduled to come in monthly now, wants to do a pill count next time I'm in and discuss lowering my meds. As of right now, I haven't been able to lower anything. My stim it's programmed right, so I'm not even using it. We will see. Hopefully he's understanding and realizes it takes longer than a month to get this all situated before dropping meds like flies.

    Keep us posted!
  • see if they can give you names of PM. Or do you have a spine dr.? They often work with PM. After my accident, I kept copies of my medical records for 2 years so I could consult with different medical professionals. I live in Florida and the laws with narcotics are so strict. I think (Im not sure but I think) there may be a licensing level to prescribe more than what your dr "believes in" You need to be under medical supervision so try to work it out with your current PM and do some research. I can relate to your situation. I waited 2 hours for my PM apt, last month. I was in tears with pain by the time I saw him.
  • try4smilettry4smile Posts: 33
    edited 01/11/2013 - 7:49 PM
    I have had a 2 oclock appt and got out at 5:30 before. My pain doc does procedures in his office. Sometimes he gets backed up but when its your turn you get the same care. My pain doc is the one who put in my SCS. I can call my Medtronic guy anytime and he meets me in the lobby of my pain docs office. He does it there. It;s not like you have to undress or anything. I call, he meets me. If he has a meeting with a new patient in my docs office then I'll meet him in my pain docs office. Or if I have an upcoming appt with my pain doc in a few days he just meets me at the office

    You should be able to call your Medtromic guy ANYTIME you feel you need an adjustment. He should of gave you his phone number. Its not up to someone saying they think you've seen the medtronic rep too much. I think you should at least get ahold of your rep and ask him to meet with you. Maybe you will have better luck with an adjustment now. How have you met with your rep before? Does your pain doc give you the impression thats something he would even say? I say that because altho I have a great pain doc, I made one of the office ladies mad one time for asking the doc about something and she made it clear to me that SHE handles that type of thing. Heck, I didnt know. Guess I accidentally stepped on her toes and I apologised.

    But you have the right to meet with your rep in any case. Do you have a GP that you can go to and ask about another pain doc? I dont know if you have the kind of insurance that needs a referral or not. That so terrible for that to have happened to you. If you want to see this guy again, after you meet with your rep and if you would have some success with the adjustment I would ask him to note to the pain doc that you had some success with the latest adjustment. Then I would call your doc and make an appt. and see what they say. The worse thing that can happen is them sayin no. But I really doubt that unless its just a really bad practice. Best of luck to you....and keep us posted :)

    Hugs :)
    Herniated disc C5 C-6, DDD, Fibromyalgia, Nerve damage both arms, Disc Decompression, SCS 2010, Si joint pain, many epidurals, mri's, trigger point injections. Nerve conduction tests, RFA 11/28/12, RLS
  • so far with 3 adjustments in the settings. I will call the the one rep who gave me his cell and see what he thinks. What's especially sad is that NOW they tell me that I have arthritis in my hand whereas before the implant they really encouraged the procedure because it would help my hand. The arthritis was never mentioned until months after the SCS implant. I DO NOT think it's arthritis though. Years ago I went skiing in bad conditions with patches of the ground showing. I hit one of those patches and my ski pole went into my knee. I had surgery on my knee and get arthritic pain every once in a while...especially when the weather changes. However, the pain in my knee is nothing compared to my hand and very different with more pain. I feel like no one really listens to me when I tell them about the continued pain, they just want to hear if the stimulator is working. Does anyone else feel like this when they go to their appointments? I don't think I made anyone angry but who knows??? I am so frustrated and I don't like to complain to anyone so you all get to hear it instead ;-). I'm going to look into the process of a referral somewhere else. Thanks for the input and for putting up with my venting!!
  • If you don't complain to your doctor, how is he supposed to know something is not working. That's there job to listen to our complaints and come up with a plan to make life a little better.

  • I have never had an office visit with any PM doctor so it's my ARNP who is telling me this. My family doc could not do anything for me since this was out of her realm so PM was the final resort. If I don't have them then I won't have anyone anymore. I've always been such a positive and upbeat person but this is creating so much stress and even depression (at least I'm guessing that is what it is) which is due to legitimate pain and frustration of dealing with it but interpreted by them as something counseling will fix to learn coping skills to deal with pain. I'm all for getting off my medication because I hate the side effects and especially the costs but when I do have times that the medication works doesn't that support the fact that it really is pain that they should continue to help with???
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    edited 01/18/2013 - 12:48 AM
    Softballmom - I'm sorry to hear of your negative experience with your health care provider! Having the right PM makes all the difference in the world. IMHO, it is absolutely ridiculous for him or her to treat you that way. Have you called your medical insurance company and asked them for a doctor recommendation? Also, most hospitals have a doctor referral service you can use so I would check with the hospitals in your area. I do not see anything inappropriate about trying different doctors until you find the one that works for you. There are some great doctors out there and you can find him or her! Good luck! Jerome
  • pandqmamappandqmama Posts: 175
    edited 01/19/2013 - 1:35 PM
    I have had trouble with my pain doctors in the past, the thing that really helps me is a good primary care doctor. No, she cant do anything but give me my meds but, she supports and finds me help whenever I need it. I am still awaiting my scs, but if it wernt for her, I wouldnt have even met the doctor who is going to implant it. Talk to your primary care doc!
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