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Thread: Harrington Rod Problems after 25 years?

  1. #61
    Join Date
    Mar 2009
    Posts
    1

    Harrington rod issues

    Hi--this is my first post. I hope these boards are still active; reading them and knowing I'm not alone has been comforting.

    Dr. Keim did my scoliosis surgery 30 years ago this month, and for many years I've had no issues. I've always been active--running, walking, hiking, dancing--and had no pain whatsoever. But as soon as I hit my 45th birthday two months ago, the wheels started comin' off. After sitting for awhile, I experience lower back/hip pain, stiffness and sometimes tingles in my leg when I get up and walk. It's hard for me to straighten up after sitting, too. Exercise, monthly theraputic massage, a good mattress, and 'sensible' shoes help. So does adding an orthodic to one shoe, as one leg is shorter than the other. But I wonder...is it enough to just manage the pain and discomfort?

    Despite the rod, I may be listing to the left again. I've seen in X-rays that my rod isn't in the same position it was 20-30 years ago, which is disturbing. Not sure what's up with that, and I hope it's not terribly dangerous. I'm still screwing up my courage to see a doctor--preferably Errico or Dryer. I live out of state now and nobody here has a clue about my condition.

    I do NOT want to go through surgery again. But I also don't want to get myself in trouble by not directly addressing a potentially serious problem.

    Thank you for listening. Suggestions/feedback welcome.

  2. #62
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133

    aging fusions and people

    Hi CB401,
    Both I and my fusion are 10 years older than you, but we are pretty much in the same spot. I have some discomfort and inconvenience, but no severe pain so surgery is not indicated. The scolio doc I saw said my rod had "peaked" - that's how he described the shift you mention. I have lost 2" of height due to this. My sympotoms related to nerve irritation at the base of my fusion cause me to walk more slowly than my peers, and I generally don't choose to walk more than a mile because it is uncomfortable. My original docs are retired, and I have moved. I just saw the scolio doc in my nearest university medical center. I searched the medical center's web site for this specialty, and cross-checked for membership in the Scoliosis Research Society. My own doc sent me to a neurologist - he's clueless, and now I see a different general practioner.
    Last edited by JulieBW; 04-08-2009 at 04:47 PM.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  3. #63
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Quote Originally Posted by JulieBW View Post
    Hi CB401,
    Both I and my fusion are 10 years older than you, but we are pretty much in the same spot. I have some discomfort and inconvenience, but no severe pain so surgery is not indicated. The scolio doc I saw said my rod had "peaked" - that's how he described the shift you mention. I have lost 2" of height due to this. My sympotoms related to nerve irritation at the base of my fusion cause me to walk more slowly than my peers, and I generally don't choose to walk more than a mile because it is uncomfortable. My original docs are retired, and I have moved. I just saw the scolio doc in my nearest university medical center. I searched the medical center's web site for this specialty, and cross-checked for membership in the Scoliosis Research Society. My own doc sent me to a neurologist - he's clueless, and now I see a different general practioner.

    Julie,

    My GP was pretty clueless when it came to scoliosis too. When I went to him last year asking what my leg pain was (turned out to be nerve pain from scoliosis), he told me to do stretches. When I asked him if it could be related to my scoliosis he said 'oh no.' Sheesh. One year later and a 13 level fusion later, I still haven't been back, although when I need to for 'regular' sickness stuff I will go.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  4. #64
    Join Date
    Jul 2007
    Posts
    10

    PLS read MY Thread on Revision Surgery it will help u

    from madnsn2

  5. #65
    Join Date
    Jul 2007
    Posts
    10

    hi see my post under revision surgery flatback syndrome

    you ll see i went through it in 81 andnow have flatback syndrome fixed by revision surgery to resect a portion of lumbar spine and its very risky my name on here is madnsn2 so there is a lot of info i have on this since im goin thru it now maybe the info will help look under revision surgery with my user name good luck

  6. #66
    Join Date
    Apr 2009
    Posts
    1

    28 years after surgery

    I wore the Milwaukie Brace for 9 years then had a single harrington rod fusion when I was 16 years old, in 1981. I am now 43, have 2 kids and have been able to do everything. No restrictions, no problems whatsoever. However, last week I took a fall on the airplane during severe turbulence (I am a flight attendant). I fell onto the front end of the armrest then on to the floor. I have had back pain since. taking pain medication too. I swear it feels like I can feel my rod now. It is weird. never felt the rod prior to this really. anyone ever feel like they can feel their rod inside them? anyone ever had any trauma to their back years after surgery ?? My Doctor was Richard Hopkins,Emanuel Hospital, Portland Oregon. anyone have him do your surgery. He was wonderful. I am new to this forum. I hope to hear from people. I am a little nervous now.

  7. #67
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,795
    Hi....

    Welcome. I'm sorry to hear about your accident.

    Although it's almost certainly not an emergency, you should probably have a spine surgeon take an xray and look and your back. Hope it's nothing.

    Regards,
    Linda

  8. #68
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Hi, I am so sorry about your fall tlc1095, I am had quite a bit of trauma to my back in the last 40 years, and yes sometimes I seem to feel my rods,( I have two of them) , I feel the screws also. As you can see by my signature I am having problems now, they were not caused by falling over etc.

    I would go to a good scoliosis specialist and have a few tests Xrays etc just to put your mind at rest, if nothing else. Good Luck.

    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  9. #69
    Join Date
    Mar 2008
    Posts
    8

    Pain 30+ years post surgery

    I did very well too until my late 40's. My advice is to find a good PT and exercise as much as possible. My story goes as follows...
    When I was 13 I had a fusion of my thoracic curve (70 degrees corrected to 30ish) with a harrington rod. My lumbar curve was not corrected - only in the 30 degree range then. For many years my only issue was nerve pain that radiated down my r. leg caused by scar tissue at the bone graft site (sacral iliac joint). I gave up playing college field hockey, and gave up running for exercise a few years later due to that pain. I was otherwise very active - had no problems with 3 pregnancies (including the last at 42), skied, hiked, etc. In 1994 I was notified that I had probably been exposed to Hepatitis C from blood transfusions during my surgery (in 1970 people could still sell blood) and although I was asymptomatic the test was positive. I chose to have interferon treatment and it cured me. Then I "put my back out" doing yoga at an advanced level at age 48 and had the same immobilizing pain occur 4 times over the next 3 months. It was never clear whether the pain came from the bone graft site or disc compression but PT eliminated the problem. Since then I have been afraid to do any exercise except PT and I now have much more discomfort and my curves have doubled - now over 60 degrees each. (Dr. thinks that "the fusion never took".) I have lost 2 1/2 inches of height. I am functional but rarely entirely free of discomfort. I am seeing Dr. Frank Rand in Boston in mid-August to see what the next step should be. I was grateful to learn about his experience with similar issues through this site. Best of luck to you!

  10. #70
    Join Date
    Feb 2009
    Posts
    3

    Angry i know your pain!!!

    hi, my name is debbie. i had surgery in san francisco, about 27 years ago. i was 16, and now i am 43. i have a harrington rod, plus had a fusion. my rod is in the top part of my back. for the past few years my pain has gotten a lot worse. i have problems with my neck and the lower part of my back. i am affraid has i get older, i am not going to be moving very well. i have a torn disc and a cracked disc in the lower part of my back. not sure how that happened. i am starting to get scared as the pain gets worse. not sure what to do about it. i wake up everyday with pain in my neck as well. sometimes its very hard to get out of bed, but if i stay in bed to long then it gets worse. if there is some kind of excercise out there that i can do, please let me know. thanks debbie

  11. #71
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,795
    Hi Debbie...

    It's not uncommon to have problems above and below scoliosis fusions. I'd like to encourage you to see a specialist with a lot of experience in treating patients with prior scoliosis fusions.

    I'm going to send you a P.M. with my contact info.

    Regards,
    Linda

  12. #72
    Join Date
    Feb 2009
    Posts
    3

    Angry

    hi, i know what your going thru. i had my surgery 27 years ago. i have pain all the time, and i feel like i am strting to lean to one side also. i live in a small community, no one here really knows what to do about my pain.(except want to give me pills). i don't take anything as of right now. i would like a better solution. please let me know if you have any ideas. my surgery was done in san franciso. my rod is in the upper part of my back, i also had a fusion. this really sucks!!!!

  13. #73
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133
    Hi Debbie,
    Your pain is not normal. You need to see a scoliosis specialist. You also need to work with a physical therapist. Do you have a regular stretching and strengthening program for your back? If not, you will need to start with that. I do stretching and strengthening 2-3 times per week, and swim twice weekly. I have a smaller problem at the base of my fusion, but not a lot of pain.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  14. #74
    Join Date
    Feb 2009
    Posts
    3

    Smile

    hi juliebw,
    thanks for writing to me. i don't do any stretching or strenghening excercises. can you suggest a tape or book i can buy? i know i need to go see a doctor about my pain. i am not sure who to go see. i was seeing dr.pasternak in santa rosa california. he wanted to take my rod out and break my back so he could reset it. well that was the last time i went to him. (quack) i would like to start with the excercise, to see if that will help. i feel very stiff. please write back if you have any ideas. it's nice to talk to someone with the samething. debbie

  15. #75
    Join Date
    Sep 2007
    Location
    Geneseo, NY
    Posts
    133
    Hi Debbie,
    There are many books and DVD's available on stretching and strengthening, I think yoga could be wonderful for you. But you really need to work initially with a physical therapist to find out what you need to do. Our fusions make us different from the people for whom the books and tapes are written. Your torn and cracked disks are of concern: what precautions do they require? You will probably need a referral from an MD for your insurance to help pay for PT. You can see your generalist MD for this referral, only if he/she knows appropriate precautions. You can be upfront with the PT that you are willing to come for a limited number of sessions, and want to learn long-term exercises you can do at home. I don't know the exact source of your problem, but this may be where to start. My MD did not know the name of a scoliosis specialist, and did not know that this is an orthopedic specialty, not neurosurgeon.

    A scoliosis special would be the best person to figure out the source of your pain. I searched the specialties at my local university medical center, available on their web site. I then cross-checked to see who was a member of the Scoliosis Research Society, available on the SRS web site.

    You say that your fusion is high, like mine (thoracic). Don't be confused by all of the cases here and on Yahoo, who needed surgical revision for flatback syndrome, a problem involving the lumbar area. Don't feel that you have to see a specialist right now who is mentioned here, because they may not serve people in your geographic area, and you might get stuck paying the bill from your own pocket.

    The MD you saw might be a quack if they recommended revison surgery before exploring stretching and strengthening. But maybe they did extensive testing (MRI, CT Myelogram), know exactly the source of your pain, and know that PT can't help your problem. Maybe thats what your disks require, I don't know. I'm imagining at this time you need an opinion, not surgery.
    Last edited by JulieBW; 06-12-2009 at 02:18 PM.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

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