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Anyone referred to Scoliosis Surgeon after fusion?

lynnsyllynnsy Posts: 197
edited 06/11/2012 - 8:45 AM in Back Surgery and Neck Surgery
Hi guys, I haven't been on for quite some time, but SH did help me through my 3 level lumbar fusion performed 2-1/2 years ago. I have been experiencing 24-7 chronic pain since surgery for about 8 months now, and finally had the nerve to go get checked out by my Neurosurgeon for the on-going pain. (It has progressively gotten worse since surgery) I am totally limited in everything with excrutiating pain.

When I first went back to my surgeon that did the fusion, he said that ddd has set into the L-5 pretty bad according to my MRI's. I have L-2-3-4 fused. Bad thing is, when he first performed the surgery, he told me at that time that my fusion "MAY" weaken the vertabra above and below my fusion,.... well it happened. He wants to perform yet another fusion adding to the current one. BUT, to perform that he would have to take out all the current fusion, re-do the whole thing through my belly this time, and add a level L-5/S-1. Well of course this nauseated me to no end knowing that it took me more than a year to heal from the 3 level fusion. I'm scared to death in other words!!!

So I decided to get a second opinion from 2 other surgeons. They stated that my fusion "forced" my spine into scoliosis, turning my spine, as I was healing from the fusion. (great :-(... It not only twisted my spine a little, it forced curvature also at the thoratic level. Lucky me!!!!

Now those surgeons suggestion was to take out the current fusion, then add 2 more levels, to make me a 5 level fusion, OR do only the L-5/S-1, but they would still have to re-do the whole thing, you can't just "add" a fusion to a current fusion because of the long "rods". OR, go to a "Scoliosis Surgeon" and see how he would approach this twisting, and curving, (which is what I'm doing) OR live with the pain the rest of my life (I'm 54) continuing with the percocet and anti-inflamatories, and it to continue to get worse, then needing surgery at 60 or till I can't take it anymore. Well the healing process from any of this as MANY of you know, is long, long, long and painful. How would my body be able to handle recovery at the age of 60? I know what would happen, I would be wheel chair bound the rest of my life!!!

So my question is? What the heck should I do. And surgery is inevitable. I'm just sick over this!!! I just want this 24-7 pain gone!!!


  • I am so sorry that you are having to face this dilema.
    The levels 'going' above and below a fusion is something all of us fusion spineys dread. :S

    I only had a single level fusion, but was told that the disc above and below were degenerated, so I asked the surgeon what the risk was. He felt that it wasn't necessary to fuse others levels or put in a stabilising device there, so I have trusted his judgement. I hope that I won't have problems with those levels in the future. :SS

    I haven't heard of the fusion causing twisting and curving of the spine. It sounds horrendous! Hopefully you will be able to find a good surgeon that can sort out the problem. It will be a BIG surgery to recover from, but hopefully they will only need to replace the rods into the existing screws. I don't know about that, but think I have heard existing fusions being extended by adding rods. Sometimes, if the screws aren't compatible with the new rods, they have to replace them, but as your surgery wasn't done that long ago, hopefully they can leave the screws in place.

    Are your 3 levels all fused fully? If not, that could explain the need to do the fusion again.
    You definately need to get the information from the surgeon who will do the surgery. You may even find that different surgeons would treat the problem in different ways.

    I agree that the recovery from fusion surgery is long, long, long and painful!! #:S
    BUT I have heard recently of someone who had to have their single fusion extended to a 3 level fusion, and this time her recovery has been so much easier than before. She is doing ever so well and so pleased that she went ahead with the surgery. :D

    Lynnsy, if you knew that this surgery meant you had to give up a year of your life to recovering from it, but after that, your pain was either gone or manageable and you could get your life back, would you go ahead with it?
    Sometimes we need to go through the bog to get to the green grass on the other side!

    I can't tell you what to do Lynnsy.
    I wish I could wave my magic wand and make you well again! >:D<
    One thing that I can do is to be here for you and support you through all of this. Do stay with us on here and vent away. We understand and will try to help you through this. :-)

  • Sorry to hear of your predicament. The question that comes to mind when reading your post, is if it is the pain of recovery that you fear, is that fear greater than the fear of living in the constant state of pain you are in right now? The surgery provides hope that the pain will be significantly reduced. Leaving things as they are seems to present a lifetime of being miserable.

    I'd be curious to hear what a scoliosis surgeon has to tell you. Keep us posted.

  • I think you are smart to seek out the opinion of a spinal surgeon who specializes in scoliosis and spine reconstruction. Those patients routinely need multi-level fusion, and the surgeons who treat them are up on all the latest techniques.

    From your description of your situation, it does sound like some sort of intervention is inevitable. Seek out the best spinal specialists until you find one you are comfortable with...arm yourself with the best information and then decide what is the best solution for you.

    It is not easy to face more spinal surgery. Perhaps I am unusual or just got lucky, but I found it easier as I went along. My first surgery was the worst. I have yet to figure out why this was so....

    By the way, I don't think you're going to fall apart in six years. Isn't 60 the new 40???
  • Wow, what a situation you find yourself in!

    I can't be of much help but I find your fusion result interesting and yet confusing in some respects. With longstanding lumbar problems spanning 37 years, over the last 6 years or so I developed degenerative scoliosis. Am seeing a spine surgeon who does at least 2 huge scoliosis surgeries a month and we talked about what to do with my back. He feels he can help me with a two-level lumbar fusion (L4-S1) and I'm scheduled for that in September. Because all of my lumbar discs have degenerated and are flat, he isn't worried about them herniating or causing problems post-fusion due to stresses. In doing the lumbar fusion, he will also be straightening that curve and since that will throw my body at an angle due to the remaining large curve above it, he says my brain will not tolerate that and will correct for that unnatural angle, thereby somewhat straightening out the upper curve and bringing my spine back into alignment.

    I've never heard of anyone developing scoliosis from a lumbar fusion, but I'm new to this type of fusion and have a lot to learn. I think you would do well to have a second opinion by a spine surgeon who specializes in scoliosis. This is something you want handled by a specialist. As far as being afraid of the long and painful recovery, I have to agree with "C"--would you prefer to live in what sounds like the intolerable pain you have right now, for the rest of your life? I think you just need some good advice, from an experienced surgeon, and some time to sort this all out in your mind. You will come to the best decision for you, that you can live with and hopefully be happy with in the long run. My best to you!

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • SpineAZSpineAZ WiscPosts: 1,084
    I had an L4-S1 fusion in 1993. I needed L4 added so had this done via back incision and side incision in February of this year so now I have all new hardware and am fused L3-S1
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • I just found this, cause I couldn't remember what my "title" was to respond on my decision.

    Well I just had surgery on Oct. 31st. WHOLE different surgeon that my insurance referred me to, (YAY, so everything is totally pain for except my deductable) I TOTALLY trust this surgeon after have 4 opinions. He is so intellegent, and told me everything that was wrong with my previous surgery (3 level 3 years ago, and why I've been in so much pain). I am right now at the moment in a rehab facility for 2 months, and sporting around my lovely 7 level fusion (bionic woman lol) 12 hour surgery, AND I was walking 4 days post. With my previous surgery 3 level, I didnt, or couldn't walk for about 3 weeks post!!!!

    I'll get you-all caught up later, but right now I've gotta eat breakfast, then go to PT, sorry... (boy this place I'm in is REALLY nice, like a real nice all-inclusive hotel :-)
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