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Failed SCS Trial

asmithaasmith Posts: 136
edited 06/11/2012 - 8:37 AM in Spinal Cord Stimulation
And now the pain clinic thinks the best treatment would be to take me off all meds? What?!? Is it me, or is that going from one extreme to the next?
So I was in enough pain to get a trial, but suddenly I am now not in enough pain to substantiate my medication.

I cant help but feel that they wont make any money on me, therefore, what good is she to us?





  • I am sorry that I don't have any advice. I just wanted to say that I am sorry that the trial didn't work out well for you. Did they give a reason why they want to take you off the meds? It really doesn't make much sense.
  • I don't know much about your case, but based on the information in this thread, I would get a second opinion. If you have trouble arranging an appointment with another PM, go to your PCP and ask for a referral. You are entitled to better care than you seem to be receiving.
  • Spinal cord stims are only for folks who are NOT surgical candidates. No wonder yours didn't work since you have mechanical problems!

    I would wonder what another surgeon would say about your herniated disc, annular tear, etc. I understand that you say no one wants to get in the middle of a mess by another surgeon. I went 2 1/2 hours away to a larger city to find the right guy to salvage my back. There's GOT to be somebody, got to be.

    At the minimum, you sound like you need a different PM doc as your relationship doesn't sound good. Fight, fight, fight, to get a referral(if that's what you need from your insurance) to an ortho spine surgeon who will at least meet with you and go over your films. FIGHT!

    I hate to see in your sig line that you describe yourself as a broken mom. Not that an internet post would make you feel better, but I don't see you as broken. Broken is someone who gives up. You are reaching out for information and recognize you have wonderful girls. Fight to get the treatment you deserve.

    You may have to start getting nasty and reporting people to regulatory agencies if that is necessary. For example, if you are limited by an HMO that won't let you go out of network for treatment when it was their doc who won't treat you. First, though, I'd research someone that you want to go to. If you would like to PM me your area, if I know of someone in that area I would be happy to give you a name.

    Don't give up-your pain isn't giving up! I hope you find some relief soon, please post an update.

  • I have been with this clinic for over 2 years. And have never felt the need for change. Thats why this all a bit shock to me. This was the type of place I felt so safe with. they took such good care of me. I have been with other pain clinics that treated me very badly. Told me the pain was all in my head, or told me that I was a drug seeker...I've been through the ringer with the different types of Pain Clinics. And this one is one of the more Prominent ones in the area. Its the type you have to sign the contract, they do pill checks and pop drug tests with zero tolerance.
    Its part of a huge hospital in our area with supposedly the best surgeons and anesthesiologists.
    I guess thats why I am so down. I cant believe its gotten to this. After all this time, everything I have told them, all they know about me..and now they suddenly this no medication is the answer?
    I've been everywhere else. I cant go anywhere else.

    I've been deemed disabled by the government, they know I wont heal..I just cant see this being the answer. I feel that by them taking me off the medication, not only are they putting me in danger, but they are putting my children in danger as well.
    Its like saying - Here you go Miss Stay at Home Mom: You are on high doses on opiates with 2 kids at home. what we are going to do with you now is take you off your pain killers, even though you are already in pain, and have days you cant get out of bed...we're going to go ahead and make that even harder on you by taking any relief you have. Have a good day and oh, by the way, good luck taking care of your kids by yourself while you are going through this. Ciao.

    I dont get it.

    Thanks again for taking the time. I've just got a lot going through my head right now and have no idea what the future holds for me. I can barely get by now, I dont see how this will work. I fall into the category of: but you? you're too young to go through this. It cant be that bad? So its hard to get anyone to take me seriously.

    I swear all I need is for these doctors to spend one day home with me, so they can see what my life is really like, and maybe then they would see the suffering I endure on a daily basis.
    Its an awful Shame.

  • You need to search out a second opinion with a Fellowship trained Spine Surgeon. An SCS will not help the problems you have.

  • Really, big fancy hospital you are happy with or not. Get another opinion!

    If there is no other option, what about a pain pump?

    Seems to me someone is dropping the ball on your care. You either need to find out exactly what these people are thinking for your future or find someone else.

    I did the 2.5hr drive thing for a second opinion to.
    It led to the SCS in my case. Sometimes that outside look just sees things differently. Sometimes what they see can be life changing.

    I hope you can find a better answer then the one you are getting now.
  • I agree with all the others, seek out a second opinion somehow. If you feel you can't, request a sit down with the PM doc currently handling your care and ask him flat out what his plan is to help you manage your pain. If he says he has none, then get him to give you a referral or ask him to provide the name of a surgeon that he might recommend.

    Bottom line, don't give up. It's a big world and even though it seems at times that our medical care is very limited in our areas, when it comes to medicine, it knows no boundaries. Many people seek help far outside their geographical area and have wonderful success. Dig in, be a fighter and things will find a way of working out.

  • I am sending you a PM. I believe I can help.
    Patsy W :H
  • I'm so sorry things have not worked for you.Did you suffer any complications or did it just not reduce your pain at all? I can't understand why you would be all of a sudden cut off from your pain meds. What are you doing now for your pain? I think you should get in with a Neurosurgeon because I believe that you have a problem that can still be dealt with surgically. I would go this route before contemplating an SCS for the moment because it is thought to be a last resort measure. I am waiting to have a pain pump installed since my surgeries didn't give me relief and I've been told that surgery won't help my pain. I totally understand your situation and whatever happens don't give up. There is always something that can be done. Take care
  • What reason did your pain mgmt doc give you for his/her "no more meds" thinking? Susan
  • The reason is because my pain levels are high right now and they think I am on a high enough dosage. They dont think going up in my dosage is the answer to combating my pain. They think I am having the adverse reactions to the pain meds..they think the pain meds are what is causing my increased pain..which I think is BS.

    I meet with my main PM doctor next week. I havent spoken to her in a while. I have been meeting with a different doctor (he's like the head of the Pain Clinic) bc of the SCS. And he is the one that proposed me going to all meds.
    So I am interested in what my regular PM doctor take will be on it. She has been my doctor since the beginning so and I am pretty anxious to let her know how this all makes me feel.
    At the same time, I dont want her take it the wrong way. We are all put in such a terrible situation with the Opiate Stigmas put out there. If we cry that we dont want them to take us off the meds, god forbid it be because we are being sincere...its most likely (in their eyes) bc we are addicted to them and have become drug seekers. Its constantly running through my head that they think I am a drug seeker now and I have no idea why. Even my psychiatrist suggested it and he said I should confront them about it. I would have no idea how to confront them about it and the last thing I would want to do right now is rock the boat.

    I currently live in NY, and next week I am going to California and hopefully (waiting for a call back today) going to see a doctor at Cedars-Sinai. They have a huge Spine Clinic there and if I find someone that wants to help me there, I would take the plunge and move all the way across the country. I am THAT desperate.

    Thanks for reading.

  • I haven't a bit of advice. I just want you to know that I feel so bad you're having to go through all of this. Please don't be broken. Be in pain but be whole and be in pain. It sounds like you are if you're trying to be seen at a doc in LA. I'm curious what your regular PM doc has to say about the (to me) crazy theory that the pain meds are actually making your pain worse. I definitely think it makes sense to research the best possible spine surgeon you can find and go and see him/her and, as it has been said before, KEEP FIGHTING. That's what whole people do. Alina, you are not broken. Susan
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