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Can A Intrathecal Pump Help Stop Soft Tissue Lumbar Pain After 6 Spinal Fusions?

Old MarineOOld Marine Posts: 33
edited 01/06/2015 - 9:03 AM in Lower Back Pain
I ask because long story short, I am about to turn 66 years of age, male, had 2 fusions in 2003, CERVICAL C5-C6 and 6 weeks later at L3-L4. Botched badly, lost my job of 22 years and never worked again. Finished at age 55. My primary care doctor advised me NO surgeon ever allows more than 2 fusions and I asked why I had been conned into ANY if they were supposed to stop the tearing, searing soft tissue pain and spasms in my lower back and in fact did NOTHING to help. His response was that my back was now a "train wreck" and that is a direct quote. I had also had 5 prior stomach hernias repaired so he basically wanted me to use narcotic pain meds. I flat refused.

Fast forward after over a dozen MRI, CT tests, dozens of X-Rays. The hardware had been placed wrong in my prior lumbar surgery. No kidding....I had know that when I never walked again without a severe limp from my left leg that I now "drug" behind me. It is now Nov 2013 and I wake in the night feeling as if I had been shot in my left buttocks. I go to get up and fall. My left leg is now 100% paralyzed and NO feeling, NONE. I meet a new ortho surgeon whose tests show he needs to remove that old misplaced L4 hardware & redo it. He ALSO needs to fuse it ALL. From L3 to and including S1. I now have NO choice and accept his demands to at least do low dose Hydromorphne, Tylenol etc combo medications until the following April 1, 2004 surgery. The delay was because I literally had to switch health plans that would then allow him to use the hospital that has the Mazor Robot for such a complex surgery. Time for the operation and he opens me to discover something all those MRI and other tests never saw which REALLY makes me crazy mad....A huge tumor the size of a very large grapefruit wrapped around the base of my spine! THIS was all that caused the paralysis and foot drop...but hey, we DO have authorization so lets fuse the boy up anyway right? (me bitter?)

Even longer story as short as possible. The next 13 months are worse than my time in War in the USMC. I develop a monster football sized Seroma where that tumor had been. I now have a drain tube in my back and for 5 months my wife misses work to drive me to the hospital for Interventional Radiology to change this tube and inject me with Betadyne and later actually use a Chemo drug in attamps to "scar" it to close up. EACH visit has a co-pay of $250.00 plus other fees. My wife also spends an hour every single NIGHT, injecting me with these fluids to fill me with scar tissue. pain is off the charts and I am not allowed to shower or bath in the hottest year on record. They call in a plastic surgeon who literally not only botches his attempt but butchers me in the process. While my primary care doctor is searching for a new plastic surgeon and getting authorizations etc I feel a tiny pea sized lump in my left breast. (yes, I AM MALE). But it hurts SO bad the doctor send me to a surgeon and back to the hospital I go. But in that 3 week wait it has now grown to the size of a little bigger than a very large egg! So they have to now do a full Mastectomy....Having fun yet?
OK, 4 more days and now plastic surgeon #2 does the next back surgery for the Seroma. So in the space of 5 weeks I have just had 3 more MAJOR surgeries.

I never recover this time. Today makes it 9 months and 2 days since the initial multi-disc fusion. With all the complications I was never able to do the walking or physical therapy. Now, I can't even stand straight up anymore. Walking is a memory. I creep around on a walker and those endless tearing, burning RIPPING muscle type of "soft tissue" pains are worse than ever. I have been on Fentanyl 50 MCD patches since the 4/1/2014 surgery non stop. They no longer help one bit. Today I see my primary care doctor and ask to have them cut to 25 MCD so I can begin a completely drug free life again. But last week met with a pain management office. They agree with me since the narcotic pain meds no longer help and now I am terrified of the withdrawal process ahead beginning tomorrow.

The Pain Management office is practically SHOVING the neurostimulation implant device on me since I can have a "trial"period with it. I have had ZERO results using any and all forms of TENS units and I feel this is just a glorifies similar device. I also see I can have a "trial" of the Intrathecal Pump as well (to a degree) and feel it is the only REAL chance I have for honest pain relief. My entire need is to STOP the pain that for me is a full 10 almost 24/7 but not be high or drugged. I have not driven in over a year as I refuse to put others at risk and as a result, I now risk my wife losing her job of 35 years due to missing a couple times a week for over a YEAR now. They have been undeniably supportive and caring but they also have to have someone they can count on. I was supposed to give Pain management my answer in 3 days, the end of this week. But I cancelled that appointment. I meet today instead with my primary care doctor to ask for a prescription to cut my Fentanyl by 1/2 and guide me through withdrawal. I am utterly TERRIFIED as my pain is completely unbearable now on the drug. Yet as it wears off (if I even can tell, not sure anymore?), I don't notice much of anything other than horrific withdrawal symptoms.

My goal is to be off all narcotic medication to make my decision as to what to do to contol pain for what little time I have left on this Earth. I want to be less of a burden to my wife. I want to stop thinking that ending my own life is my only way to escape this pain that has turned me from an extremely strong and vibrant, athletic semi pro surfer and motorcycle rider & racer into a withering old man, hunched, crying all the time, beaten down and defeated. this is NOT me. Does anyone have any experience with these pain pumps with back spams and.or soft tissue pain? i hate that word. "soft tissue pain".....It is all I ever had. Now this year alone so far I have over $450K in medical bills! Before, I had trouble walking and that tearing in my low back. Like a zipper pulling across my low back, a muscle tearing is all I would feel then back to bed for a month. Now? Well now I can't walk, can't even stand half the time without a walker. I honestly could care less anymore about ever walking. I just need to stop this PAIN....ANYONE who knows if these pain pumps help with muscle pain, please let me know? I have read so many horror stories about all that goes wrong I am scared out of my mind. One more "failure" and I will have to end it myself. And I promise you, that is NOT me or who I am.

Fusion With Hardware C5/C6
Fusion With Hardware L3 THROUGH S1


  • Old MarineOOld Marine Posts: 33
    edited 01/06/2015 - 1:50 PM
    My wife and I just met with my Primary Care Doctor. To my amazement he too recommends I begin with the St. xxxx’s Prodigy Neurostimulator with Burst Technology since the 1 week trial and simplicity makes more sense to him as a starting point. I honestly simply can NOT imagine how it can help with my pain is in muscle and other soft tissue but he is the only one in the medical profession I know who has not done a single thing that has hurt me. So, in 2 weeks I will let my pain management office know that I will begin by trying that if people here lead me to also think it a wish opportunity. I never thought I would live to experience so many surgeries and thank God for forums like this to help those of us in distress.
    Fusion With Hardware C5/C6
    Fusion With Hardware L3 THROUGH S1
  • SarahLindeauSarahLindeau Posts: 767
    edited 01/07/2015 - 2:09 AM
    Your story is incredible for all the wrong reasons. My heart goes out to you. What you are going through is so much you must wonder who you xxx off in a former life to deserve such misery. But both things your docs are offering are options and that is good. You have options.

    I can understand you ads hesitant to choose and risk not getting relief, but each are relatively mild operations, right? In my own, non medical opinion, what do you have to lose? You can only go up from here, right?

    Talk at length with your trusted physician and your wife. You will make a good choice.

    I commend you for wanting to be off the pain meds but please do make sure you've got the required assistance.

    Good luck.

    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • jlrfryejjlrfrye ohioPosts: 1,110
    After receiving the trial and in post- op i was crying, My doc had more morphine to give me if the trial did not work. He came into my room and I was crying, he asked is the pain that bad and all I could manage to get out of my mouth was no this is the first time in over 10 years i have felt no pain, I have had 8 surgeries ( fusions) 5 on the cervical and 2 lumbar. Unfortunately due to other health issues the implant cannot take place ever. I wish you the best of luck. It could of gave me my life back
  • Thank you so much Sarah. And Susan....YOUR outcome would actually be worse than the shows I now am in to me. I can't imagine. To both of you, I did meet with my Primary care doc and HE insisted he thought my pain management was correct in suggesting I try the SCS first. I have read on it a week now and I simply REFUSE to even consider that possibility. People in my very pain management group who have had it are losing their MIND with the misery it has brought. Then, they will not remove the leads as the "scar in" and so now they are stuch with the added horror of those aggravating their already near suicidal level of pain.

    So I get to the horror stories on the pump patients and read worse. I am utterly terrified. I simply can no longer endure this pain, and yet fear becomming so much more incapacitated that I will never again even see my home again if it goes as badly for me as it did for so many I read about by their family members. My worst case nightmare is being in a hospital bed unable to even end it if that point actually did arrive.

    This is a horror story that seemingly never ends. I am always SO positive, a survivor in war that nobody could stop. I never quit. I am the guy who keeps everyone going. And now I lay here wondering if I dare even consider my last option for fear I won't be able to "end it" if it goes bad? How on Earth do some of us ever get SO far down this road? I look in the mirror and for the first time in my life see only fear. And a beaten down old man that pain has made of me...
    Fusion With Hardware C5/C6
    Fusion With Hardware L3 THROUGH S1
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