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Spinal fusions that did more damage then good

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marie04822
marie04822

I've had major back problems for years I.e.,back spasms,etc. 2 1/2 years ago had fusions that made it worse. The Dr at Mayo suggested a Neuro HF stimulator. Before this is implanted I have to see a Psychologist/Psychiatrist to give the 0.K. because  I'm having a foreign object implanted. Has anyone heard of this ?. It's difficult for me to understanding the reason for this since I have had both knees replaced, a plate in my left foot due to arthritis and a "hardware store" in my back since the fusion and have never been required to be interviewed by aPsychologist/Psychiatrist.  Also, has anyone had any experience with the Neuro HF 10?  Thank you for any input you can provide. Marie

2 likes, 15 replies

15 Replies

  • brittney55912
    brittney55912 marie04822

    Posted

    Hi Marie! Just curious what Mayo hospital you go to? I am scheduled for l4 to s1 fusion 3 weeks from today. Hope you find some relief!
    • marie04822
      marie04822 brittney55912

      Posted

      Scottsdale. I didn't have my fusions there tho.  I just went to Mayo recently.  Good luck!
    • brittney55912
      brittney55912 marie04822

      Posted

      I am going to the main one. Rochester MN. Good luck to u too!! I have confidence in my surgeons. Trying to stay positive 😆
  • Choanie
    Choanie marie04822

    Posted

    Hi Marie:

    In 2006, I got a Medtronic Dorsal Column Spinal Stimulator implanted in my back, slightly above the waist on the R-hand side.  I was referred to a local Pain Specialty Clinic for this.  I definitely had to be interviewed by a Psychologist first for an hour.  Then he gave me a standardized 587 psychological, multiple-choice test.  After that, I had several sessions with their social worker.  All of these had to be done before talking to the neuro-surgeon who was going to be implanted it.  There was a team of the Director of that Clinic, the Psychologist, the Social Worker, the neuro-surgeon, and my physical medicine & rehab doctor who then got together to talk about me and ALL had to be on board before I got this implanted.  I also had a "trial unit" surgery and wore that for three days.  The surgeon warned me of a "placebo effect" making me think that it was fabulous and was going to work.  I had IBS-C and was concerned about the wiring in my abdomen swelling and was told that wouldn't be a problem.  I also had Lymphedema following breast cancer and radiation.  I was worried about total body swelling and the fact that it would be implanted in the upper R part of my body which had been diagnosed with Lymphedema.  I was told that that would not be an issue.  It WAS!!!!  The unit was implanted about three months after the trial surgery and I had lots of physical therapy prior to it.  The neuro-surgeon said he did NOT think it would work for the kind of pain I had from severe scoliosis, spinal stenosis, severe osteo-arthritis, fibromyalgia, neuropathy, and more.  All others felt I should give it a try.  I did and they (Medtronic) couldn't regulate the wires to stop abdominal swelling.  They tried for 4+ months.  I then had swelling in the chest wall.  It was frightening and uncomfortable.  It did help with the pain but the side effects were too dire.  I ended up having to have it shut off and then I had a total knee replacement.  About four months later the unit had to be removed because it put me at risk for infection.  That is true for any foreign object in your body.  If I had to do it over again, I would NOT have done it.  It wasn't worth the risk of putting my body through all.  In addition, I was severely depressed for several years afterward.  I asked my doctor what it did to the brain once those wires had been implanted and removed.  He replied, "I don't think we know that yet."  Great!  However, he was always honest with me.  Since that time, nothing has completely helped the pain at the level I am at from multiple conditions, even Opiods.  It is very risky.  Medicine is not an exact science.  Each person is an individual situation.  Unexpected side effects from surgeries can and do ruin people's lives.  Think twice before doing this and do it only as a last resort.  Take it from one who knows and wish this site had been there then for me to ask someone.  

    From One Who Knows and Whose Life Was Ruined 

    Medtronic didn't provide "after" support for me either but wanted to know what I thought in a one-hour phone call for their research!!!!!  Medtronic makes pace makers and many things and is a top company.  I do know someone else who had their machine implanted for severe migraines.  By the way, my T-spine was compromised when the neuro-surgeon removed the lead wires.  That is explained as a side effect possibility and why you want a "top surgeon" doing the procedure who does many of them yearly.  Mine was all that and still things happen.

  • buggsy1000
    buggsy1000 marie04822

    Posted

    Hi Marie

    I have been through the same as you failed spinal fusion back in 2014 and then referred for the spinal cord stimulator with the same device offered to you.

    I live in the UK and I am having it done but it is a very long process. I finally saw the surgeon on 19/1 this year, who confirmed I could go on the program, I then had my psyc and phisyio assessment on 11/3, I now have to wait until 31/5 to 9/6 to have a 2 week instay in hospital, this is to then learn about the device, coping with chronic pain, again you spend time with psyc, phisyio, occ health, pain nurses and the surgeons. This is just to confirm that you understand the device, how to live with it, what if it fails ect ect ect. After this they said I have 16-20 week wait to have a 2 week trial, you go home with the device and see if it helps your pain in a day to day life. They then take it out and if it has been successful I then have to wait a further 16-20 weeks to have the permanent implant. So all in all I am having to wait about a year to get to the permanent stage if it works.

    This might be different depends on your country you live in.??

    I have found this to be all silly really and a massive delay, like you I struggled to see why you have to see people for assessment. Especially as like you I have had two knee operations, a kidney removed, apendix, hernia surgery and a spinal fusion with rods, screws and cages around l5, l4 and s1 and failed spianl surgery. All of those operations and the failed back surgery I was never once offered to speak to someone or be assed.

    But sadly this is my last hope of having something that might assist with my pain, and giving me a slightly better quality of life if it works, rather than being the doped up man that I am currently because of all the medication.

    inhope this helps a little especially if you live in the UK?? Then you know the procedure.

    Keep in touch

    George :-)

    • kathy07828
      kathy07828 buggsy1000

      Posted

      Hi George. Good grief! You've been through a lot too. My dr also wants me to try the Nevro but I've had a bunch of surgeries, including 9 spinal surgeries in 14 months. I had been told that laser spinal surgery doesn't cause scar tissue, which was totally false. After 8 of them I could hardly stand and wound up with a spinal fusion that turned out to be complicated from all of the scar tissue. It still hurts to stand and my nerve was damaged because it was wrapped up in scar tissue, causing neuropathy in my foot and ankle. Since scar tissue is so damaging, I can't understand why your Dr would implant the leads, and then remove them only to implant again months later, causing more scar tissue and putting you at risk for more complications.I sure hope everything works out for you. Let us know how it's going.
    • Choanie
      Choanie buggsy1000

      Posted

      OMG I can't believe the delays and waits you have been through.  I had the assessment part in April, got the trial unit for three days in July, and then got the stimulator in mid-Oct.  After it failed, they sent some "in charge top person" from Medtronic once to talk to me.  Then they removed the device in Nov. After the removal, no counselling or other was provided.  They called the following July and someone high up talked to me about the experience for one hour, research purposes, and they paid me a $75 stipend.  Big deal!  I was "clinically depressed" (longer than 3 months) and wasn't taking an anti-depressant.  I didn't want to.  Anyway, I was very depressed for about two years.  Nothing really touched the level of pain.  Now I am unable to do anything else.  

      I hope you have better luck.  Yes, things are different in the UK with socialized medicine.

    • kathy07828
      kathy07828 Choanie

      Posted

      Hi Choanie! I met with my pain Dr yesterday to discuss the Nevro he wanted me to"just try" to see if it helped. They don't even have the team that you had helping you to make this decision, just him. It sounds like your team, and most if any Dr's, don't understand the many colors that make up each person's individual pain profile, and the conditions involved with it.I've been reading and learning things from the people on these forums for a week now, and took many notes. I have also come to understand from my physical therapist that my pain is mainly soft tissue, (tendons, muscles....not bone.) She's a leader in the field of treating various issues caused by myofascial dysfunction, which is what I have. I've had various surgeries over the past 25 years that have all given me scar tissue. A mastectomy, implant in the other side too, complicated c-section that needed a wound care specialist to get to slowly close up, partial hysterectomy 3 years later using that same incision, and then the 8 laser surgeries followed by a 4 level fusion. I have so much scar tissue my GI dr was unable to perform a colonoscopy on me because if he had forced the probe through, he was afraid it might go through the abdominal wall. My nervous system went on "war mode" after the fusion to tighten muscles everywhere to protect me from further damage, sending false pain signals to them and causing them to react by going into spasm to protect an area they were told was being harmed. They increasingly got worse, becoming unable to function together normally again to achieve basic movements, which is caused muscle dysfunction. Muscles have memory for how they should work, and the longer they're doing so abnormally, the harder it is to get them to break the cycle of staying in spasm, causing disability and pain. My PT understands all of this and uses dry needling and laser therapy, along with manual manipulation and exercises she gives me to coax them into functioning normally again, and reteach my nervous system to interpret thing correctly and then send the correct signals to my muscles and fascial system. (This is the duct tape holding everything i the body together, and has the nerves in it too). The fascial highway connects everything in the body together and relays the commands from the brain to them. In our case, it's falsely interpreted threats that they bring to all the muscles, which respond in an abnormal manner.) Since the fascial system contains all of our nerves, the false sensory signals from the brain also cause fascial pain. This is what fibromyalgia is, which Dr's also can't get a handle on. The swelling and inflammation of arthritis is also from myofascial dysfunction My PT is trying to spread this information into the medical community, but Dr's usually aren't even taught anything about the fascial system in Medical School. She's presently teaching a class on this to new medical students in a local medical school. Most physical therapists don't really understand it either, but my chiropractor does and also helps me a lot. After over 2 years of weekly treatments, my hips still won't stay seated correctly because the muscle systems go right back into their old memory, tighten up, and restrict movement. But my hip flexors are rotating again, slowly giving me mobility as each layer of muscles gives up and starts functioning correctly. I'm also an HSP, (highly sensitive person), which is another condition caused by a dysfunctional sensory system, and false signals from the brain that produce very real pain. For examole, when I get my laser therapy treatment, a laser pad that looks just like a stiff heating pad is placed on an area we're working on for only 14 minutes, and the pad gets warm during that time. If I'm having an HSP day, the pad will feel like it's getting hot when it really isn't, and my sensory nervous system, (somatic), will react accordingly and I'll actually have a slight burn on my skin in the shape of the laser pad when it's removed.

      So, the conditions which I have, and I believe many of us on this forum also have, will not have a positive response to the implant of any SNS, because it doesn't target these conditions, and just makes us more reactive, causing complications and pain. I think you might fall in this category too. I explained all of this to my pain Dr, who referred me to my PT even though he doesn't completely understand what she's doing, but is helping many of his patients that have been non-responsive to surgeries, injections, and other trucks he tries to help them, and we agreed that I'm not a candidate for the Nevro. I can't imagine having a battery implanted in my butt among layers of muscles that are already responding in abnormal spasms, causing more of them, and as it heats up feeling that it's burning me.

      I hope that this helps you to see if you also suffer from these conditions, in understanding them. I fight depression too, but as I learn more about what my body's doing, I feel a bit better. It gives me a little feeling of control instead of helplessness. Unfortunately, most of our health professionals don't have a clue about this type of pain, so they can't offer appropriate treatment. And my Medicare only allows 20 PT sessions, forcing us to pay for most treatments, making it difficult to pay other bills. But we sacrifice to do it, with the hopes that I can stand without pain and walk on a beach again some day. Sending a prayer your way. ~kathy

  • cynthia70714
    cynthia70714 marie04822

    Posted

    Marie,

    Yes I was supposed to go, but they never set up the appt. So I just had the surgery for the nervo and I am a failed stimulator, I have to have my battery moved as it's pushing out of my back, I would go, cause now that I think of it maybe I would of not have done it. But years ago when they first came out I had gone to one and I said no back than because the risk factor was high. So now I am in for more surgeries because the dr wants to replace this one with something different that he thinks will work for me. I feel like a human guinea pig or lab rat, he said it's trial am error, I was like thanks for the error cause now I'm in a whole lot of more pain.

    But yes you have to go. I just went with the surgery without it and I told them that I didn't go.

    Good luck

    Cynthia

    • Choanie
      Choanie cynthia70714

      Posted

      That is really sad.  The thing is, medicine is not an exact science.  Our histories are all different.  Side effects happen and it isn't possible to list all of them.  Besides, stuff happens and it's awful when it happens to you and you are stuck living with it for the rest of your life and the doctors move on to do surgery on others.  
    • kathy07828
      kathy07828 cynthia70714

      Posted

      Hi Cynthia! Hope you had fun playing with your grandkids. As you can tell, I've been following your comments to try and understand this Nevro thing which my pain Dr had suggested I "just give it a try".

      Please read my textbook response above to Choanie. I strongly suspect that you suffer from the same conditions I do, and feel that moving the battery maay not help you. I worry that your body will resent another intrusion and respond by fighting it, no matter where it's put. The nervous system can only take so much trauma before it responds with sensory overload, and reactsi n a dysfunctional way, causing us more pain. We really are lab rats. The dr's here in the US are also unaware of the follow up protocol used in the UK, which is necessary for a successful outcome for people that aren't as complicated as us. I suspect that the insurance companies won't pay for it, and they're running the show.

      In my case, my body now has scar tissue from my shoulders down to the top of my legs, so the fascial system that runs through them is causing each area to respond to perceived trauma. When my PT works on muscle groups needed to allow my hips to finally stay seated, my body fights to go back to the way it's become over the past 4 years. My lower back and hip signals everyone to react in spasm, connecting to all of the previous surgical areas. I'm currently sitting here with the muscles at the top of my abdomen, chest and back all in trails of spasms. It's very painful, muscle relaxers don't help, and only my chiropractor can stop them. I usually have to spend the night sitting up in my recliner because laying down makes the chest and abdominal spasms unbearable. I had a very productive PT session last visit, getting down to some new layers of muscles to begin to get them to stay unlocked, and now my nervous system is responding big time. The hip muscle is actually attached to the back of the shoulder and the front of the sternum, so in my case the whole thing just seizes up all along the muscle. Then the scar tissue fascial highway from the other surgeries jump in too. It's complicated, as most of the people who have not gotten any relief from anything they've tried. I think that many people like me are suffering from muscle dysfunction and myofascial pain too, and each can be different. Sending a prayer your way ~kathy

    • Choanie
      Choanie kathy07828

      Posted

      This sounds so familiar and I am so sorry you are having to suffer and live this way.  The doctors don't know the outcome.  That's the bottom line and we are guinea pigs, hoping something will work, taking a chance.  It's complicated.  Once scar tissue forms, others things happen.  I am sending a prayer your way with hope for some positive outcome.  It doesn't happen overnight.  It is a long process.  Choanie
    • kathy07828
      kathy07828 Choanie

      Posted

      Hi Chloe, I hope that you find some relief from something along the way too. I think that although we're looking for that magic wand and desperate for pain relief, and these Dr's prey on this. They don't get to know us and understand our medical situation, yet are quick to try the newest thing on the market.. My dr's aren't even planning on studying the results of the implants they're doing, so they can analyze the results and get a better understanding of who isn't an appropriate candidate for this. I think it's recless and irresponsible, since they specialize in pain management, but that's the way the US medical system is designed. Money isn't made with new physical therapy techniques to be developed, and insurance companies don't want to pay for many visits. The legislators that could push for this are supported by big donations from the manufacturers of medical devices and pharmaceutical industry, so they give in to the wishes of these lobbyists. There's no big financial gain for anyone if something like myofascial pain is taught to dr's so that conservative interventions such as dry needling are used from the start. The pain dr's are rewarded with big payouts for implanting devices and doing invasive procedures. Drug companies are making money hand over fist with the price they charge for new drugs. There's no one that invests in the study of pain and new strategies to help our bodies to heal themselves, because there's no profit to be made from it. So, we're stuck with what we've got, most of which was caused by these surgeries despite only the slim chance of a good outcome. That's the way this country ticks, and there will be many more casualties like you an me unless things change.
    • Choanie
      Choanie kathy07828

      Posted

      You are absolutely right.  I am currently disgusted with FDA guidelines changing and insurance companies denying payment for legitimate use of Opiods for chronic pain.  Doctors are discouraged from prescribing them for such "off-label" use.  Yet, addicts and others can get them, no problem.  
    • kathy07828
      kathy07828 Choanie

      Posted

      The ER doctors have no problem giving them out though. My daughter works in a dr's office and many of the elderly patients are coming in messed up because they're getting percocet after a trip to the ER. When I went with a gall bladder attack last fall I gave them my list of meds I'm on 40mg of percoct a day and the dr gave me an Rx for more! He obviously never read my list which I gave to the nurse, even though she didn't ask for it. I refused to take the rx. because I didn't want problems fom my pain Dr.i filled it. Thank goodness I found a better insurance policy this year. I had Aetna the previous two years and didn't read the fine print at renewal time last year. They magically eliminated their tier 1 and 2 drugs. Most now started on tier 4 or 5 that I took. My percocet were over $100 each month. Then I hit the "donut hole", whatever that is, and they were more! Crazy!
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