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Failed Back Syndrome! SCS for mechanical pain???

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:22 AM in Pain Management
Hello,
I posted quite a bit on the old forum, but haven't posted much on this new one. So, I'll post my brief history first.
I injured my back at work in Sept. '06. Had PT, ESI, a discectomy (L5/S1) in Dec. '06, a fusion at L5/S1 and ADR at L5/L4 in Nov. '08. The pain is still as bad and sometimes worse than it was before surgery. I have recently been diagnosed with FAILED BACK SYNDROME!!!! ARGGGHHH!!!
My question is two-fold. First of all, how do you determine if your pain is "mechanical" or nerve pain? Second...if it is mechanical will a SCS help with the pain?
Is there anyone out there who has been diagnosed with Failed Back Syndrome (lumbar) and then had a SCS implanted with a good outcome?? My PM doc says that the SCS trial is my next and final step at an attempt to control the pain. I am praying that this is the answer, but the more I read, the more I feel like maybe it just decreases nerve pain. I know my leg pain is nerve pain, but I think my back pain is mechanical.
I would love to hear from anyone who has a spinal cord stimulator for lumbar pain. Has it helped with the back pain? What kind of restrictions do you have? My doctor told me that we would discuss the restrictions at my next appt. (this coming Friday).
Also, one silly question. Are people with SCSs still able to get massages? I don't know if I can handle the thought of never being able to treat myself to a massage!
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Comments

  • I have a Cervical SCS, so I cannot answer lumbar specific questions, although Oriah and a couple others should be able to.

    My SCS takes care of nerve pain primarily. It will help with other pain simply because it can trigger an endorphin release which allows me to use my own natural pain fighting ability. To say it fights it though is misleading. Of course a trial is the only way to know for certain for each individual.

    Sometimes the pain we think is mechanical ends up being nerve pain that is just all jumbled up into our big ball of misery.

    Sometimes other pain is amplified by multiple pain sources and when you reduce the number of pain sources, our sensitivity to feeling the untreated pain diminishes.

    As far as getting a massage once the SCS is implanted ... it depends on the location of the generator, the leads and the extension wires. I would be afraid to get a massage, but I have a generator in my hip and wires up my back into my neck. Sometimes even certain activity will cause irritation along the extension wires. That may eventually go away, but I really don't want anyone touching them.

    The cool thing is that I can give myself an internal massage with my SCS. That is so relaxing!!!

    One question for you. Have you gotten a second opinion on your condition?

    Sorry you hurt so bad.

    "C"
  • Well, I don't know if one would consider that I've had a second opinion or not. My NS who did the surgery pretty much wrote me off as just not recovering like "I should be"....he was going to send me for a functional capacity exam and wipe his hands of me. My physical therapist said that I needed to ask that he refer me to a PM doctor. I did and he did and that's who has recently diagnosed me with FBS. He ordered a CT mylogram and said that my fusion was solid and that my ADR was in place and he saw nothing that needed "surgical attention". He then said that I had FBS and he gave me cymbalta in hopes that it would help. I took it for a week and had quite a bit of pain relief, lots of energy and felt really good until about 6 hours after taking it and then I felt like my heart was racing, doing flip-flops, my heart rate would skyrocket to about 105, I was extremely tense in my upper back and neck and had severe diarrhea. Because of the horrible side effects, I was only on it a week (this past week) and then stopped. My next appt. with my PM is this Friday when I guess we'll discuss the SCS a little further. I was sure hoping that the Cymbalta would be my miracle drug because the thought of getting my hopes up for something else only to have it fail really frustrates me. I'm trying to stay positive, but this has been going on for two years and I just want my life back! I know I'm not the only one...I've been around here for long enough to realize that there are so many people that are worse off than I am ...so I hate to even complain.
    I appreciate your reply. An internal massage sounds AWESOME :)!!!
  • Seriously before I would let any doc put a diagnosis of FBSS in your medical records, I'd seek a second opinion from a neurosurgeon. You can still be treated by the PM doc for the current issue, but a neurosurgeon is going to look at your situation with different set of eyes and my be able to "see" things differently. It's too early in the game to give up!

    "C"
  • I didn't realize that it would be giving up if a dr. put a diagnosis of FBSS in my medical record. Believe me, I don't want to give up and I don't want to get to a point of "no return". Since my ADR/Fusion I've had 4 months of PT with no improvement and tried all kinds of oral meds. I can't take Lyrica or Neurontin because of the bad reaction I have to both of those. Overall, I just don't tolerate meds very well at all. I'm not sure what else there is for me to try. My x-rays look good, my CT/myelogram looks good. It seems as though no one knows why I still have more pain (and more constant) than before surgery. Thus, I guess, the FBSS diagnosis??
    If you don't mind, can you please explain what the ramifications of having FBSS in my medical record would be? And how do you keep them from putting something like that in your medical record?
    Thanks "C" for you reply and advice!
  • I would also really like to know why it is bad to have failed back syndrome in your medical file. I'm kinda worried what that means, wait a minute. =)) lol like it makes a difference for me at this point but I still am wondering.

    Oh and wondering if you can get a SCS in bth cervical and lumbar. I am doing a little SI therapy and finding I still have way to much pain in low back and I'm 30 and had 4 surgeries just in the lumbar.

    I would love to get a SCS if it would help me. lol thinking I probably shouldn't even ask my Dr. since I am waiting to have a failed fusion fixed and 1 or 2 levels added 1 for sure my c7-T1 went from not bad oct 2006 to severe in 2 years. I want a new spine.

    Okieback have you tried having a hardware injection to see if you are getting pain from that. if you are fused and hardware was used see if your hardware is the cause.
  • Toyoungforthis,

    I didn't say that having a diagnosis of FBSS in your records is "bad", I said that I personally would get a second opinion before letting a doctor put a diagnosis of FBSS in my records.

    The reason I say this is due to what I have discovered by speaking about it to numerous docs of all specialties. Basically it appears that once a person has been diagnosed with FBSS they are shipped off to pain management and they get into the merri-go-round of docs that all have their own opinions about FBSS. Now of course they can't ethically allow their feelings to cloud their judgement or change the way they try and treat a patient, but due to the fact that they actually struggle with it would concern me highly. If the PM doc feels the patient would still benefit from surgery, they are in a bind because the surgeon is obviously the one who determined there's nothing else that they could do to help.

    Now here's the real unpopular vision of FBSS. Many of the docs feel that there are many patients who do not take an active role in their own recovery from surgery. Some feel that the patients need to have a little more patience when it comes to the length of time it takes to heal from certain surgeries. However these patients will continue to bother the surgeon until a certain point is reached, the surgeon slaps the FBSS diagnosis in the records and ships them off to Pain Management to get them out of their hair.

    Many patients refuse to quit smoking, lose weight or participate in physical therapy. Many give it an effort and then when they feel a slight increse in pain they give up and want the surgeon to make the pain go away . Docs don't want to go the extra mile when they feel their patients aren't willing to do so themselves, so they do the minimum and off you go. If a doc has a motivated patient who is working as hard as they can given their condition, then the doc is going to be motivated to try everything they possibly can and then some.

    Another reason given for FBSS is the fact that many of us sit in front of the surgeon getting information on the surgery and the outcome, we forget what we are told. Most of us have heard "a 50% reduction in pain" or an "80% reduction in pain" at the time we spoke with the surgeon. At that moment that sounded so wonderful we said "I'll take it" and pressed on with the surgery. When the pain was reduced but not gone completely many patients go back to the surgeon complaining they are still in pain. They have forgotten what they were told before the surgery. The surgeon says everything looks good, but once again the patient insists something more needs to be done, a diagnosis of FBSS is slapped on and the patient is shipped out.

    Many surgeons don't want anything to do with "fixing" other surgeon's "failed surgeries", so trying to get a second opinion on an FBSS diagnosis is difficult. I have no idea how the insurance companies might look at someone trying to get a second opinion once they have been given the FBSS label.

    There are those who truly have failed surgeries and need more to correct it. Unfortunately it has become a battle for them now that the "syndrome" has become so easy to slap on someone.

    Some docs even get upset because they will get a patient who comes in and demands medication based solely on the fact that someone tagged them with FBSS.

    So for me, I'd rather not have someone tag me with FBSS. Just my opinion.

    As far as your question whether a person can have more than one SCS. I have read where people do have multiple implants. I don't know anymore than that though.

    "C"
  • Ok now I understand more why its not a good thing, my chronic pain clinic did put that on my record, but still I have a very good spine Dr. that knows I won;t give up.
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