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Severe Chronic Pain from Scoliosis Surgeries

JDM555JJDM555 Posts: 4
edited 06/11/2012 - 8:55 AM in Chronic Pain
I am currently a 21 year old male who suffers from scoliosis. I was diagnosed with scoliosis in Aug, 08 and it kept progressing to the point where I needed surgery. It reached 55* and I had scheduled a surgery for Dec. 28, 2009. Surgeon said everything went great and the curve is down to 15*. On Dec. 31, 2009, the surgeon told me something wasn’t seated properly or a bolt was loose, and he had to go back in to fix it. I was in much more pain after this surgery than the first.

On the road to recovery, the first 7 months were pretty good, considering I had spinal surgery recently. But after that, the pain I had before surgery started coming back and my spine began to become stiff and make cracking noises. I told my surgeon my problem and he kept saying “it’s normal” and it would heal within a year. The pain kept getting worse and a year post op came, and he didn’t know how to handle my pain, so he transferred me to a physiatrist. I got cortisone and lidocaine injections a few times and nothing helped with the pain. I got minor relief for 1-1.5 weeks, and it came right back.

I currently have 2 kinds of pains in my back. The first pain is spread out across my right side of the back, vertically. Best place to describe it, is along the rod, the muscle that goes along that area, is very stiff and has a trigger point at the bottom, right over the bottom right L3 bolt. What is interesting is that is the bolt that he had to “adjust” the second time opening me up. The other pain is along my fusion, specifically lumbar levels. I have an incredible amount of stiffness in this area. When I bend or twist, I randomly get stabbing/sharp pains. I can’t run, gym, or do any activities. Both pains together are making me have a hard time standing/walking/sitting.

I went to another surgeon to get a second opinion because I didn’t believe my primary surgeon knew how to deal with me whatsoever. Surgeon 2 saw the x-rays and said they looked fine. But pointed out my fusion from T9-L3 was stopped on a lumbar curve I had. He said that my pain might be coming from L4 because a lot of stress is being applied on it from holding up all the hardware. He said he wanted to inject cortisone between L3 and L4 and see if it would relieve my pain. He also recommended I get a CT scan to get a better view of what might be causing the pain.

I got a CT scan, and he told me that most likely, there is not enough bone on my L2-L3 level and he wants me to wear a SpinalPak II bone stimulator. I tried it for a month or so, and the pain was getting worse and I had no signs of improvement. I decided to check out another doctor’s opinion, who is also part of the SRS like surgeon 2. He was the most straightforward with answering my questions. He saw the CT scan and said there is absolutely no bone on the right side from L1-L3 and no bone on the left from L2-L3. He said it’s very rare to get any success from a bone stimulator this late after surgery, when I know I have a failed fusion. He also said as surgeon 2, the levels surgeon 1 picked were questionable seeing as how he stopped midway on the curve in my lumbar region. He also said the right L3 bolt doesn’t look like it’s seated properly. I felt the most comfortable with him because he was honest and wasn’t beating around the bush like most surgeons. He recommended that most likely I’ll need a new surgery that will replace all the old hardware and most likely go down to L4 and balance the spine more, while making me wear a stimulator right after surgery. He recommended me to get some quick novocain shots in my facet joints were my failed fusion is and where L4 is to see if that gives me temporary relief, and pinpoint the cause of my pain.

Surgeon 1 didn’t recommend any sort of test and told me to “live with the pain” at the age of 21, which I think is completely unacceptable. I will get 10 or even 20 opinions if I have to solve the problem with my back.

Now, I'm asking a few surgeons around the U.S. for opinions on my X-Rays and CT scans. Some are saying to just get the failed levels L1-L3 fused, some are saying it doesn't look balanced and there might be a lot of stress on L4, causing some of the pain. So they suggest getting an MRI to see if it's degenerating and if so, do a discogram to see if it's painful. I'm confused because I'm not sure what to do. Both having the huge surgery that replaces all the hardware and adding bone graft to fuse the failed fusion levels have risks.

What if I get the huge surgery, and something in the "removal" of the hardware gets damaged, or the new hardware isn't as stable or whatever, it's a huge surgery.

But then again, what if I do the small surgery to fuse the levels, and then later discover the stress on the L4-5 levels is increasing and I will need another surgery to extend down a level or two, I'll be screwed either way.

They recommended a TLIF for the second option btw. Below are all my x-rays and ct scans uploaded on a website. Does anyone have any ideas? What should I do? I can't handle the pain anymore, it's destroying me.



  • Welcome to spine health.

    You have a very tough predicament. It wont be an easy decision to make. You realize no matter what you choose to do you will likely have to have more surgery later on due to the type of illness you have.

    That being said I think the less they open you up the better. Scar tissue can really be a problem when one has multiple surgeries. If you were me (or my loved one) I would suggest that you add in the healthy level now (L4) so that it wont have a chance to develope all of the foraminal stenosis and extra scar tissue that will likely occur (due to the stress above and extra surgery) should you wait and go back in say 5-10 years.

    My NS explained it to me like that when I added in L4 to my L5/S1 fusion. It made sense.

    It sounds like the new doctor (#3) is a thorough surgeon. You don't just have a little herniated disc you have severe scolliosis. The important thing is to do the best surgey with the highest rate of success so you can get your life back and start living.

    I know many people are going to advocate less, but with some fusions it may not always be the best. Some times a surgeon can see the future (maybe he has enough experience) to know when some thing is a good idea or a bad idea & just shoddy work.

    Good luck & feel better,

  • Thanks Julie. That's what I was thinking. I want to add the level now, and straighten out my spine, because I don't like the way it's curved now. Plus, I think with the lack of fusion making it solid, it's progressed a little over the past year. I want to get it straightened out for good, to get the fusion taken care of, and to wear a stimulator right after surgery to help stimulate it properly this time.
  • Hello - I feel just awful for you and hope your decision gives you some permanent correction. My 16 year old daughter has scoliosis and they are recommending surgery and we are having a tought time deciding to do it or not. I probably should not have read your post as now it makes me not want to do it all the more. Can I ask who your doctors are? I am just curious if it happens to be where we are. We are in the twin cities in Minnesota. Please keep us posted on how you are doing. Kay
  • Would be a good idea to get a lumbar MRI to see what is going on at your fusion levels and L4-5. You would be able to see compression on the cord and the nerves. You need one anyway before you have another surgery as a trend for the future.

    It does look like you have a tremendous load on your L4 vertebrae. Do you have any numbness in your legs?

    Six months after my fusion, I had zero bone growth. I insisted on a bone growth stimulator, and wore it for 7 months afterward. I finally fused at 16 months. The sales rep told me there was no data on fusion success with the bone growth stimulator when it is begun 9 months after a fusion.

    Is your pain medication regmimen helping at all with the pain?

  • I'm with Julie and SG on their observations. The load from what my uneducated eyes could see was a response of "OMG!" That is a lot on the L4 level. This 3rd surgeon seems to be seeing that "more is not always better" as well.

    As SG asked, do you have an radicular or neuropathic issues from your L4 area into your legs? For your age, I have to tip my hat as they say, for you are not only educated on what is going on, and what has gone on, but are being a very good advocate for your health care. Please let us know how it all turns out.

    Also of course, a hearty Welcome to Spine Health!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hey guys. Sorry for the late response.

    SG, I ended up getting an MRI and it showed L4-L5 stress. Just asking the doctor who gave me the injections and not my orthopedic surgeon yet, he said there was some degeneration in L4-L5 area, but nothing too bad. Considering that I haven't done any activites, strenuous lifting/bending/gym, etc. in the past 2 years, and still having degeneration is not a good sign for me. What if I work out 5 days a week after I get fused and play sports and actually start using my back? The degeneration would get a lot worse. So that is pushing me to go for the big surgery and go to L4 and just straighten everything out and try to relieve as much stress as possible from L4-L5-S1.

    Brenda, I also noticed the level on L4 was pretty ugly, but some of the surgeons said it looked fine and it was "well balanced", so I'm not sure. I guess it's normal. But I still want to fix it. I don't really have leg issues/pain. I do have a hard time walking recently. I have to walk slow and careful, and I might limp a little. Recently I've been in a lot more pain and I can't even swim without my back getting extremely tight and aching. Thanks about the comment on my age, but I really want to just return to the gym and not have to act like an old man anymore. Many years of my youth have gone to waste, and now this has ruined pretty much my last 3 years, hopefully I get it fixed and can enjoy the next 10 and start a family without any issues. If only...I can the same health as a "normal" person.

    Thanks for the welcome as well.
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