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Multi- Level: Long Fusion Surgery

LauritaLLaurita Posts: 16
edited 01/27/2016 - 8:53 PM in Scoliosis
I am fused from T3-sacrum. Is there someone out there who had a long fusion? I would like to hear about your outcome. First PLIF surgery done in May 2011 was unsuccessful due to failed fusion. First revision PLIF done in 2014, then a week later an ALIF.
I am now 1 yr 5 mo post -op revisions. My left leg above knee has been in pain since the ALIF. Pain between shoulder blades, in the glutes, and in lumbar is terrible - also pulling sensation, whatever muscles I have back there shake and spasm, poor balance, no stamina - I force myself to do my daily chores always through pain. I do the walking (slowly...) but I feel as if I'm being pulled backwards. Stretching often increases pain.

If you are out there, please speak to me.

Laurita in Pain
Laurita
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Comments

  • LizLiz Posts: 9,664
    Please take the time to read this post and refer to it when you have questions

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    dilauro

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    Liz, Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • You sound like how I was the first few years! IT does get better. The balance worries me though. Are you having any cervical issues?? I am fused from T8-S1 and am getting fused C3-C7 in 3 weeks. And had the revision post and anterior as well in the lumbar from a false fusion as well. And I promise you it does get better. Your body has been thru the ringer and is still healing. So sorry you are going thru this though. Its never fun. Good luck with everything.
    Annabeller
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  • Hi Anna,
    I try to protect my cervical spine when I can, since I'm fused from T down. So far no problems up there. I wish you the best of luck on your upcoming procedure. 
    Laurita
  • Finally someone like me. I've had 3 surgeries for my scoliosis. T3-L3 (13 vert fusion) with a laminectomy & discectomy. Weather changes about kill me. Can't take narcotics cause I'm allergic. All I can take is Valium or Tylenol. Spasms just like you most  days. Every once in a while I'll have a good day but generally I feel so achy like after a gym workout. My abdomen feels sore. Ribs hurt all the time and my sternum hurts a lot. Nerve pain so bad most of the time I feel like I made a mistake having the surgeries. You're not alone.....oh and my first surgery was in 2004 and my last one was 8mo ago in June. 
    12 vertabrae fusion 2004 w/ rods for scoliosis. July 30, 2015 Discectomy & Laminectomy w/ mesh built disc & spacer, fusion one level down, new rods & new screws. Allergic to opioids. No medication except Valium & Tylenol.
  • esteveneesteven WashingtonPosts: 12
    Laurita, I hope by now you are doing better. I have been looking on this site for several days for a thread of those of us with long fusions. I had an xlif followed by a T10-pelvis fusion 5 weeks ago. It was 20 hours of surgery in 48 hours. I have no idea what to expect in the days going forward. My surgery was for adult (post-menopausal) scoliosis and I had about a 70 degree curve. My surgeon re-positioned my spine at ground zero, but I am not able to walk without a walker as my muscles are not used to the new position. That is discouraging. I am hoping to connect with someone who had to learn to walk again and others who have had fusions similar to my ten level fusion.
    I am often uncomfortable, but not in a great deal of pain. I have lots of pain relievers, but am currently just using Lyrica and Tylenol, avoiding the oxicodone if  possible because it makes my head fuzzy. 
    I would love to hear the progress of someone who has lived through this. 
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  • 9.Level.XLIF99.Level.XLIF DotsonPosts: 1
    edited 11/08/2016 - 4:17 AM
    I realize this response is more of a case study than a blog response. I chose to share my personal journey in hopes of providing you or others my surgical reality. I could not find a patients experience other than XLIF for one, maybe two levels. I hope this can provide insight for dialog between you and your surgeon(s) before you decide on the XLIF procedure, My less than optimum XLIF experience and outcome.

    My journey, so far. I had late onset scoliosis in my 50's. My spine surgeon, assisted by a neurosurgeon in the second phase of XLIF surgery, initially anticipated I would only need to fuse three, maybe four levels of my vertebrae, to be secured by bolts to my pelvic area to keep the long, 9 level fusion stabilize. My first procedure went well. Three days later, after the second surgery, I woke up in ICU, screaming! Nothing controlled the pain. I felt like an electric fence was running up and down my left side from my rib cage to my knee...this, in addition, to the anticipated post op trauma and muscular pain. And, I knew that I should not be in ICU. Those were my first two alarms that something had gone very wrong. My heart rate was, and remained at 33 for weeks. I was in hell.

    After almost two weeks in the surgical hospital, I was stable enough to be discharged to a rehab and nursing facility (where I had to remain almost three months because my husband could not properly care for me). Later, I learned the fusion had been a 9 level procedure, L5, to T1 or T2. The first time I attempted to stand, my left leg buckled and I fell. Hard. I was then taken by ambulance back to the hospital for another MRI. Nothing was broken, my first bit of good news. I immediately began telling my spine surgeon that something was wrong. Over time, the more I protested, the more I was discounted as being "a problem patient, a baby". I could not get him to hear me. I was discharged from the rehab facility, not because I was ready, but because my insurance refused to pay any longer. So, I returned home many weeks later.

    Again, I tried over and over to get help from my spine surgeon. I KNEW something was very very wrong. A year later, I was still mostly bed bound. Keep in mind I walked into the hospital the day of surgery. I was in pain, but fully functional and worked full time.

    I finally went to the emergency room when I lost control of my bowel and bladder. (My spine surgeon told me my slight UTI was the cause of my bowel and bladder incontinence) I now know that is a neurological deficit as a result of nerve injury. I begged the ER doc to call my spine surgeon. Believe it or not, my spine surgeon told the ER doctor to discharge me....I thought I was losing my mind. I was experiencing twice as much pain that my worst day prior to surgery, I lost my job because I could not work, I could not care for myself, and my doctor was dismissing me.

    I asked the ER doc for a referral to another surgeon. With a wink and a nod, he was sending me there strongly, without having to deal with his own political nightmare of offending such a surgeon who generates $millions in profit annually at the hospital. I took my MRI disc and the radiology report and took my case to Mayo Clinic.

    My nine level fusion had multiple problems. The L4 and L5 nerve roots had been severely damaged during the second part of the procedure, an outcome my surgeon never explained to me. In addition, though there had been significant correction of the fusion immediately after the surgery, there were two pedicle screws that had pulled away, and the top of the fusion at the T2 was now 27 degrees to the right, pushing against my lung, making it very hard to breathe. So now I also have neck pain, arm and hand tremors, and a lot of pain where there had been none before. The L5, L6 nerve root compression had left me in unbelievable pain, and my most pain, a 10 or 10, was now across my left hip. I lost 60% usage of my left leg - a problem that had never been at issue before my XLIF procedure. And there is nothing that abates the pain. I lay in bed packed in ice about 22 hours a day. Of course, with zero exercise, not taking Lyrica to help with the spine, hip and leg burning, I have gained 15 pounds. And always, the pain. I am in hell. Since my surgeon did not order a bone density test prior to surgery, several pedicle screws broke while in surgery, phase II of the original XLIF.

    My husband and I had finally built our dream home, and had lived there only 6 months before my surgery. We now much sell it because I can no longer tolerate all of the stairs in the house. Of course, our bed and bath is on a different floor than the kitchen and living areas.

    There are now several specialists who are looking at my case [edit]. I am desperate to hear if anyone has lived through a similar condition. If so, please share what worked, what did not work, and what you would advise.

    On top of all of the horrific, life changing outcomes that has resulted in leaving me very little quality of life, partial paralysis, incontinence, lack of balance, weight gain, incapable of living in my home, more and more miserable tests, and a total lack of ability to do anything, putting all of the burden now on my husband...my insurance has paid out over $1.2 million in medical bills, and I am now in debt over $30k in debt, during a period when I have zero income.

    I really want to put the facts out there because I am noticing in the past few months articles are finally being published regarding the nerve root compression in the XLIF procedure. But I notice they are publishing these cases over one to three levels. And that is a watered down version of my own experience, and the myopic look at this complication does not serve the total impact of what this means to a patient, and the patients family.

    Please, I am begging anyone out there for feedback. I am attempting to remain logical and optimistic. My initial surgeons scheduled revision surgery and as the date approached, I just was not comfortable with them. I decided to trust my gut this time.

    I said to my husband, sadly, that perhaps I am wrong, but I strongly believe had he experienced the exact surgical outcome, he would have been heard. Why are we females dismissed as emotional? I leave this social aspect of patients for another discussion, on a different day.

    Patients who are considering this procedure MUST be given full disclosure on the best and worst of circumstances.

    If you think something has gone terribly wrong, likely, it has. Say it over and over until someone listens, and most importantly, diagnosis is critical. If the pain continues to get worse, there is a reason for it. And then look at all your options. Ask your surgeon home many previous surgeries he has performed of this technique and technology, prior to you, on humans. Ask about their outcomes and if you may get permission to speak with a patient to have an idea of what to expect, from the patients prospective. And then research, research.

    And please. I beg anyone, if perhaps you can provide me the following: 1. Since follow up of the XLIF procedure is now showing a nerve root compression pattern, has it been determined why the nerves become compresses, especially at the L4 and L5? 2. If not specifics, is it considered a hardware problem, perhaps from a retractor or surgical technique?
    3. Of patients who developed nerve root compression during surgery, what is the success rate of the a decompression procedure? 4. Has there been any scientific evidence that nerve root compression is tied to the number of spine levels?

    All the best to each of you.
  • LizLiz Posts: 9,664
    Hello 9.Level.XLIF
    Please click on link for information about Spine-health
    Welcome to Spine-Health

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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