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  1. #1
    Join Date
    May 2016
    Posts
    48

    Question Post Ops: 6 questions; ISO experiences

    Hey All, I developed a severe kyphosis/scoliosis after lumbar fusion w/ BAK cages @ L4-5, L5-S1 in 1998. Started off 5 years later w/ a drooping right shoulder, but breaking my left femur in 2009 seemed to increase progression of curves (seems odd, but it is true). The 1998 surgery was a horror show- I woke up screaming, took 12+ Dilaudid bolus to quiet me down- I was never right after that day. I was in hospital for 12 days, the incision would not stop seeping. I had only left side lumboscaral radiculopathy before surgery, and used to sleep on a Spring Air Deluxe mattress placed directly on floor for back support. I used to sleep so well on my side. After the 98 surgery, I could not stand up from bed w/o a crippling low back muscle spasm, and if I tried to sleep on my side after 2+ hours I would get a steady dull ache in both of my thighs. Now I am confined to an adjustable bed, and have to sleep on my back. That history I thought was necessary to provide a backround for my questions: I am considering a "soup to nuts" thoracic to scarum scoliosis/kyphosis correction, breaking my spine in 2 palces, mounting hardware screwed into each vertebrae and sacrum, then rods bolted into the mounting posts, and necessary fusions. The surgeon is shooting for a 70% correction( the actual post op results I have seen in journal articles are never that high, usually topping out @ 40%). I also have a 5/6 fibrosis rating on my liver- w/some edema in lower extremeties. My Child Pugh and MELD scores are 0 and 6, respectively. ALT, AST etc. liver enzymes are WNL. QUESTIONS: 1) Has anyone w/ significant cirrhosis been warned against getting this traumatic surgery? 2) If you are forced to sleep on your back, can you feel the instrumentation? 3) How many people were placed in ICU and allowed to recover a bit before being allowed to wake up? ("titaniumed" related this was done with him) 4) How many have had uncontrollable pain upon awakening like I described after my 1998 surgery? ( It is obvious to me, because of the previously non existent thigh pain when sleeping on my side, and persistent post op pain at the surgery site, they must have damaged some nerves. I have had two other surgeries with negligible pain upon awakening, and no incision problems.) I do have a VERY high opiate tolerance after 18+ years of opiate use. At one point I was taking 8-10 100 mg MS-CONTIN tablets per day. My dose now is about 20% of that, but I'm in pain constantly. Hence my question about post op pain management- what out of the ordinary procedures were used for those of you who had long histories of heavy opiate use? 5) What was your overall percentage of correction? 6) How many folks got through with no major complications/revision surgeries? THATS ALL THE QUESTIONS. Note: I hope none of you can answer ALL of these questions, because that means you would have been in as bad a shape as I am now. If I want any QOL, I must have it done. Given my history, and the complication rates of this complex and extremely traumatic procedure, I am quite frightened. I hope you folks can help shed some light w/ your expereinces on my questions, I really need your help. Scouring the medical journals only fills my head with contradictory information and statistics. That 1998 experience is something that I will never be able to forget. No sentient creature should have to endure that amount of pain, and for that length of time. Thanks to anyone willing to share your stories, I am struggling with these weighty concerns. RJM

  2. #2
    Join Date
    Aug 2012
    Location
    San Francicsco Bay Area
    Posts
    127
    Hi and I will answer a few of your questions, and then you can PM me if you want. Perhaps others will answer as well.

    I can only say that I dreaded being fused to the sacrum and now that I am I can hardly feel the instrumentation at all. In my opinion, the new instrumentation is very different from the old. The only metal I feel is my left illiac screw, which sticks out. I plan on having this removed when the time is right. I also notice only a slight difference in flexibility, and this was something I was really scared about. So, in terms of the actual surgery and what it achieved for me - I can stand up straight and look at the sky - I am happy. However, and I don't meant to scare you, but I think it's important to talk about the complications, especially this one - I came out of surgery with a paralyzed foot. It is called "Drop Foot or Foot Drop." I woke up in ICU and they poked at my foot and asked if I could feel it, and I answered "no." It was my fourth Scoliosis surgery, and I still can't believe it, but I had a body part that was paralyzed. However, my foot was also (and still is) excruciatingly painful. I don't know how common drop foot is in Scoliosis surgery; certainly I had never heard of it, nor was I ever warned about it. So, I don't meant to scare people off from this surgery. I had flatback and something needed to be done, so I had the surgery.

    I am five months out now and not doing well. Another surgeon has just told me that some screws are off. Of course this will mean another surgery, but I would give a lot to be able to walk again. I will be posting about this in another thread. Thank you,
    1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
    2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
    3rd surgery: Hardware removal 1997, but still pain for 30 years.
    4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
    I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

  3. #3
    Join Date
    May 2016
    Posts
    48

    Sorry for your problems

    Tableone, I am very sorry to hear of your ordeal. I can still walk, but the kyphosis is so bad I stare at the ground most of the time. I have read the complication rates of the surgery and frankly it is frightening. I am considering a world class hospital, by a surgeon who does nothing but adult deformity corrections. He is tenured there and even helped design the newest fixation system. People come from the world over to him. I have learned through bitter experience do NOT ever say 'how can things get any worse?". As we both know all too well, they can ALWAYS get worse. I don't like the fact you can still feel the one sacrum post. The butcher job done on me in 1998 robbed me of my ability to sleep on my side, ( my usual ), and now I am confined to my back in an adjustable bed. I haven't gotten a great night's sleep in 18+ years. This was one of several side effects of a relatively simple two level discetomy and fusion. A simple procdure compared to what I am now considering. I could wake up screaming in pain as I did in 98, and the whole thing could just go off the rails. This is what scares me. They are breaking my spine in 2 places- what could possibly go wrong? Part of me wants to just get my exisitng pain symptoms addressed, and then have a spinal cord stimulator put in, and live with the results. The problem is the kyphosis is progressing, my thoracic vertebrae are touching in the front and have a huge gap at the rear. If it wasn't going to get worse, I would really have a decision to make. I don't really have that choice though do I? I almost know this is not going to end well, but hope is a fickle master. As long as there is a glimmer, you think "maybe I'll get lucky, and be glad I did it". It reminds me of poor old people sacrificng food money for lottery tickets- an act of desperation. I have several issues that make me an even harder than usual candidate to treat that I won't bore you with. The voice in my head says cut your losses, get the radicular and sleeping pain syndromes fixed if possible, get the stimulator, and decalre victory. I'm 61, its not like I have a family or mountains left to climb. I just want to be out of pain, off these stinking opiates, and functional. I can't express how bad I feel about your paralysis - it seems some people go through life dancing between the rain drops, others get hit by a tsunami. I hope you find a resolution. RJM

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