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Thread: New to site.......but not to scoliosis

  1. #1
    Join Date
    Nov 2005
    Location
    Louisville, Mississippi
    Posts
    3

    New to site.......but not to scoliosis

    I'm 36 years old and was diagnosed w/scoliosis at the age of 13. I had a 60% curve to the left and had to have surgery. This happened so long ago and don't really know all the technical descriptions of my condition. I know the surgery was performed in 1982 and I think (almost sure) I have a Harrington rod. But like I said this was 20+ years ago and have lead a wonderful almost pain free life since. I have not put limitations on what I can do but do practice common sense with having scoliosis. I have a 14yr old son who when I was pregnant with - had a completely normal pregnancy and childbirth. Which of course with all of my vertebras fused together had to go natural with the childbirth. You could almost say that unless I tell people or if they see the scar - no one knows anything. But now I'm starting to have a problem with my neck and shoulder (trep). I've been having physical therapy for two weeks now and it is helping. But my local doctor wants to blame the scoliosis for the problem. I still have a 20% curve. She thinks that over the years due to my right shoulder being lower than my left its causing the pain in my right shoulder. The pain is never constant. It will stick around for 3 or 4 days and go away for 2 or 3. It's either bad pain or no pain. Nothing in between. Very strange. My PT thinks it's a bad muscle spasm. And he's determined to get it worked out. But my local doctor told me today at my 2week follow up that if it's not healed by my next 2week follow up she wants me to see a specialist in scoliosis. I of course want to see the doctor who originally performed the operation and she told me the odds of him still practicing were slim to none. I went online as soon as I got home and guess what? He is still in the same location and still practices. So if I have to go see a specialist at least I can go see him. I guess what I'm trying to ask is there anyone out there who has had the surgery for that many years and have ever experienced this kind of shoulder pain. It's a pain almost in the neck but more in the shoulder. My pt calls it the trep area. And if anyone out there has experienced this and been to the doctor - did it get blamed on the scoliosis. I'm really kind of scared in a way because like I've already said I've lived all of these years w/scoliosis and have lived a completely normal life. And to find out now that I might be having problems is terrifying. I can still even now remember the recovery all of those years ago and still wince thinking about it. I just want to know that if it is the scoliosis causing my problem - what are my options? And I know I won't know an answer to this until I see my original scoliosis doctor. But I just thought I would try asking on this board and see if anyone out there had any thoughts. I'm really glad I found this board. I think it will definitely help. Hope to hear from someone. Thanks for listening.

  2. #2
    Join Date
    Apr 2005
    Location
    the uk, between london and the south coast
    Posts
    142
    hiya - i think one of the easiest things (possibly) to do would to be to get scoliosis checked out as a potential cause. it's good that your original doctor is still practicing, but i would advise you to call them and find out if they deal regularly with adult patients who have had surgery when they were younger. if not, ask for a recommendation for somebody who does regularly treat adults who have previously been fused. it would be a good move to go and get xrayed and see if this shows up an obvious problem, however from the pain you described i don't know that an xray would be a useful diagnostic tool as your pain sounds to be neuromuscular? basically, i think it would set yours and your doctor's mind at rest if you had an xray and found out whether or not there is a problem with your spine and/or rod. hope i haven't scared you! if you feel the physiotherapy is working then i'd say continue, and see if the physio can work with different areas and figure out what is causing your pain
    diagnosed aged 14 (2001)
    braced from july 2001 to february 2003 to hold curves
    fused T11-L3 on july 16th 2005 (aged 18)
    Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
    scoliosis support forum

  3. #3
    Join Date
    Jun 2004
    Location
    Ireland
    Posts
    35
    Hi raquel,
    I had my surgery in 1983, and I think it's true to say that as we get into our thirties, the necks of fused patients can be vulnerable.I have degenerated discs above my fusion and a facet joint causing pain.
    This results in cycles of neck pain about every two months or so and lasting for a few days at a time.My neckmuscles harden and the trapezius muscle is painful to touch.
    Pt is a good option and I'm still in the process of managing it as best i can at the moment.
    Sins
    Co founder Scoliosis Support Association Ireland.

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Raquel...

    Unfortunately, problems in spines with Harrington rods are relatively common. While I'm glad you found the doctor who did your original surgery, you may be disappointed in his inability to provide any solutions. If that's the case, I'd urge you to find someone who has a lot of experience in treating patients with prior scoliosis fusions. You'll probably have to travel to actually see someone of that caliber.

    Best of luck.

    Regards,
    Linda

  5. #5
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329

    Question for Linda R.

    Linda, I realize the majority of people that come to this site is for help but I'm curious about the following.... is it possible that someone can have the Harrington Rod for well over 30 years and never experience any problems? And if problems arise, is it primarly because of flatback? I thought if anyone would know the answer you would! Thanks! LYNN
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Lynn...

    It's absolutely possible for people with Harrington implants to have no problems. The first person I ever met who had scoliosis surgery when she was a teen (30-some years ago), has no complaints. I haven't been able to get anyone to commit to percentages, but the surgeons I've talked to about this think that the majority of people will never have any need of additional treatment.

    I think flatback is a relatively common complaint, but degeneration above or below the fusion (with or without flatback) is probably the most common.

    Regards,
    Linda

  7. #7
    Join Date
    Apr 2005
    Posts
    913
    I don't know how we can find out how many people who have had fusion have any type of back or related pains because of the fusion, but my guess it's pretty high, normal, heck 80% of the population that is not fused has to experience any type of back or neck pains in their lives.

    About the neck/shoulder pain, I have had them before surgery and since the surgery it's worse. Many reasons are causing this.

    1) the fusion puts added pressure to the unfused vertebreas, and causes either stifness, DDD, pinch nerves, problems with disks of any sort, etc.

    2) there is still a curve and that still causes pain

    I have tried some PT exercises, acupuncture, icing and massages-all have helped, but I do realize that the most of my pains are from my lower back and my neck/shoulder area, since my surgery, and less from my fusion. That's why I always say that if there is no need or much pain when one has scoliosis, it's better to not get fused.

    If I have to describe my pain in the neck/ shoulder area, it is general stiffness accompanied with a few pinching sharp pains, resulting from a few pinched nerves(could be herniated disks, bulging disks, pinched vertebreas). Surgery is not recommended, more PT exercises. My pain is also on and off. MRI's can see this, sometimes Xrays.

  8. #8
    Join Date
    Jun 2005
    Posts
    62
    Hi, everyone! December 6th will be 39 years since I had Harrington rod surgery. So far, no problems. I originally started to read this board to find out whether there were ways to prevent problems from occurring. I was amazed to read about all of the problems that people are having 10 and 15 years after surgery. I hope all of you are able to find some relief.
    Shelley

  9. #9
    Join Date
    Nov 2005
    Location
    Louisville, Mississippi
    Posts
    3

    Thank You

    Thanks to everyone on this board. I have an appointment with the original doctor who performed the surgery in two weeks. I just think it's best to see someone who is a professional with scoliosis than someone who is not familiar with it. I'm just like Shelley on the board...never had any problems until now....23 years later. I don't understand how I could go that many years with no complications whatsoever then bam out of left field I have this neck and shoulder pain. Granted I still have headaches but not as often as I did before I found out I had scoliosis. I'm scared to death of this appointment. But I need to know if my scoliosis is creating this problem and if it's not, this doctor is also a neck doctor as well and maybe he can find out what exactly is wrong with me. Until then I'm going to keep doing the physical therapy. Again I want to thank all of you for your thoughts and suggestions. I'm really amazed at how many people on this board are having all of these problems. I am so thankful that I've been fortunate until now and even now it's not affirmative that the scoliosis is the real problem. I will continue to pray that it's not. I will continue to read and respond on this post. Thanks again!!

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