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Spinal pain 30 years after Harrington rod surgery for scoliosis and MRI results

2 months ago - pain radiating down left arm and almost a feeling of my rod broken (it is in the thorac area) and terrible pain in my neck and upper back.  Curious as to what MRI results really mean - I am afraid I could end up with revision surgery because I believe that my rod is causing all my problems.  1st MRI done of thoracic and LUmbar - too difficult to read the Thoracic due to the rod.  Noted some Modic type 2 degenerative changes involving endplates and marginal spur formation and minor disk bulges on portions they could see.  Lumbar - loss of disk height at L5-S and degrees of disk dehydration at L3-L4 and L4-L5. Also, mild disk space narrowing at L4-L5.  Broad based disc bulges at L4-L5 and L5-S1 resulting in mild and bilateral nerual foraminal narrowing these assoiciated with facet hypertrophy.  Impression reads:  Broad based disck bulges at L4-L5 and L5-S1 resulting in mild and bilateral nerual foraminal narrowing.

Two weeks later went back for Cspine MRI - results are:  Degrees of loss of disk height and hydration at C3-C4 through C7-T1, most pronounced at C5-C6 and C6-C7.  These are associated w/broad based disk bulge and end plate spur formation, which is more pronounced at C5-C6 and C6-C7 resulting in mild and questionable abutment of the cord and mild and bilateral neural foraminal narrowing.  Broad based disk bulge at T1-T2 visualized on sagittal view resulting in flattening of thecal sac. Impression:  Spondylosis of Cspine most pronounced at C5-C6 & C6-C7, associated w/mild and bilateral neural foraminal narrowing and abutment of cord at C6-C7.
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Avatar universal
I am 51 years old; had a harrington rod inserted at age 20 at Boton Children's Hospital.  Now 30 some year later, I am in serious pain - not from the rod itself, but my muscles in my upper back, even extending down my arms and into my neck, ache from trying to hold myself upright.  Due to the flatback syndrome the rod has caused, I have much difficulty standing upright - and as the day wears on, I walk bent forward more and more because my muscles tire so.  I went to 3 different doctors and all of them have the same solution - remove the bottom half of the rod, attach hardware to the bottom part of the rod that is left in there, cut a wedge in the spine at the base of my back and attach hardware to the lower portion of the wedge, attach the two sets of hardware to each other with another type of rod, and viola, I will be pulled into place upright.  Permanently. Now, like some of the other folks have said, I have much forward flexibility right now.  I can touch my toes, no problem.  However, I cannot bend side to side, turn easily or flex backwards.  So, to correct this situation, I will lose the only fleibility I have.  This scares me, and I cannot find anyone who has had this surgery to tell me if it worked for them.  With HIPAA regs now in place you can't ask for references either.  I took a fall last year and broke my arm in 3 places - mostly because once I started falling, I could NOT twist to get myself out of the fall.  When I landed on my wrist, I couldn't move, so my weight kept pushing and pushing on it breaking it tree times. So, to become even less flexible scares me. Also, like another of the folks said above - that first surgery was a hum-dinger - I do NOT think I am willing to have another, especially without hearing from someone who says they had the same situation and are feeling better after having had this corrective surgery.  It hurts to reach up - I cannot put dishes in the cupboard or reach up to hang up clothes in my closet.  It also hurts to carry anything of any weight, even my purse, which I've greatly reduced in size.  I walk with my hands behind my back, because that somehow feels better.  I've tried pain management - they gave me perscriptions for 11 different types of pills and the pills made me sick and sleepy, so, needless to say, I stopped taking them.  I'm going to look into acupuncture next.  For now, I drink a mudslide every night, a temporary fix, but at least I have an hour before I go to sleep that I don't hurt.  -- Judy
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Avatar universal
I had spinal fusion and instrumentation 15 years ago.  Since then I have had nothing but pain and problems.  I have constant back, neck and hip pain.  I had surgery again 10 years ago to remove a small portion of one of the harrington rods because it was sticking in the muscle between my shoulder blades and I couldn't move my arms without a great deal of pain.  Because of the constant pain after my first surgery I spent a lot of time on bedrest and as a result I developed osteoporosis.  I now have osteoarthritis.  Some days the pain in my back and hip are so bad I han hardly walk or even stand up.  I had a baby just a year ago and the pain in my hip and back were so bad the last 2 months of pregnancy that I couldn't walk without assistance.  I ended up having to be induced 2 weeks early because I couldn't take the pain anymore.  I have been to multiple doctors but no one seems to have any answers as far as what to do.  One doctor told me that they could remove one of the rods but that I probably wouldn't see any real improvement form the surgery.  He also told me that the risks would be too great for me because my osteo is very advanced.  I do not know anyone else who has had this surgery so, I was very glad to find this sight and see that I'm not alone.  Thank you to everone who has posted their story.  I don't feel so alone anymore!
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Avatar universal
Wow.  I'm reading my own story... and I thought I was the only one!!  I had ONE harrington rod placed in 1980 (a mere 26 years ago this November).  This crosses over my lower thoracic and upper lumbar area, completely negating any lumbar curve I should have; therefore I walk with my trunk flexed in a forward position because I can't straighten up.  At 44 years of age, I can stand straigh and not only touch my fingers to the floor in front of me, I can get my palms completely flat on the floor without bending my knees.  I have no disc space left between L5, S1 and am in increasing pain.  The funny thing is, I work for a physical therapist who has done wonders for our patients.  I know that exercise is the key to a lot (not to mention weight loss), it's just so very difficult for me personally to get 'past the pain' when it comes to exercising.  I exercise a little and am in a tremendous amount of pain for days.  Quite disheartening and very embarrassing.  Pretty sure any surgery is out of the question (they would have to catch me first - that first one was a hum-dinger).  Would be nice to hear any advise or support.
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Avatar universal
Hello all.  This is my first crack at reserching about scoliosis. I had my Harrington rods put in 1983 and because of constant neck pain, I finally went to a doctor who advised that my rods were to long and causing me neck pain.  We schedule surgery to cut the rod down but during surgery the realized that it would be best to just remove the rods.  I never really had a lot of pain until 12 years after my first surgery and more after having 4 kids.  I would get lower back spasms, and lots of pain were they took bone from my hip to fuse it to my back.  I feel now as I get older, it has become harder to deal with the pain, even with no rods.  I constantly have lower back pain and when I sleep my arms go numb all the time.  No matter what position I'm in.  I have been having ankle pain but nothing is wrong with my ankle as far as the bone goes.  I feel that It was might have something to do with the neurological aspect of the surgery.  That is why I started to research more on this subject.  I am thankful though I had surgery at such an early age and that I had the Harrington rods. My mother and brother both have had recent surgery in the past 5 years for scoliosis.  They have both been in constant pain since they have had surgery.  And my brother just had reconstructive surgery because the rod they used deteriorated a disk in is spine.  I would like to hear more from those that are having neurological systems cause by surgery.
I know now that it is all about pain management now.
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Avatar universal
I could have been reading my story and my results of the MRI.  I had Harrington rods put in in 1966 and now I am 54 years of age.  They are still in and the pain I have been in for the past 9 years has been terrible.
I have been to specialists and the only thing they can do now is take about 2 and a half centremetres off the top of the rod and fuse the rest of the lumbar spine.  My rods start at T4 and end at L3. No guarantee even then of no pain so I have opted not to have that done.
I feel so sorry for you as my life has changed so much.  I try so hard to keep a positive attitude and am a member of scoliosis sites on the net to try and help others, but honestly it does get hard.  Exercise does not help. nor swimming, nor physio, nor chiropractors, in fact they run if they see me coming.
I probably have made you feel worse but that was not my intention I just want you to know you are not alone in this.

Keep smiling regardless!!
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Avatar universal
Unfortunately when there is metal in thebody (such as spine instrumentation), the MRI signal in this area is distorted and one cannot tell what is really going on there. There may be less distortion with a CT myelogram, and even less with a conventional xray myelogram - these test involve injection of dye into the spinal fluid surrounding the spinal cord and nerves, then imaging the fluid by CT or xray - any blockages or pinched nerve roots show up well.

Loss of disc height, dehydration, and modic changes are common as we age in the general population. Minor disc bulges may or more usually not cause any symptoms. Spur formation if bad enough can pinch nerve roots in their foramina (holes that they go through) causing pain that radiates down an arm or leg. Abutment or flattening of the thecal sac means that there is less room in the spinal fluid for the spinal cord, but the spinal cord is not necesarily compromised. A plain xray may help show the integrity of the rod inrelation to the surroinding bony stuctures. An EMG study of the arm can sometimes tell if there is any nerve root irriatation from a pinched nerve root.

As I have not seen the actual images this advice is general and may not apply to your specific case.

Good luck
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Avatar universal
Hi janski66- I suggest you have the Harrington Road taken out which is causing your arm/neck pain. I had mine taken out after 17 years and have no neck or arm pain only lower back and leg pain as you can see in my comment from last week.  I had new hardware placed in my back. Doctors found out in the 1980's that the rod caused complications, flatback etc..The Dr. I am seeing is excellent but you would have to go to Johns Hopkins in Baltimore. His name is Dr. Khaled Mohamed Kebaish. He's from Jordan. The website is www.hopkinsmedicine.org/orthopedicsurgery. Once you go into their website you have to fill out an appointment application and they will contact you if they feel your problem is worth seeing a doctor. They will refer you to that Dr. I think you can request Dr. Kebaish, who specializes in Scoleosis. Let me know how you make out and good luck to you. I know what your going thru. The heavy narcotics have to stop and the problem has to be fixed. I am probley having my 3rd back surgery the 1st of the year.  Take Care
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Avatar universal
Hello all. I am 44 years old and have Scoliosis since the age of 12. In 1975 I wore the "Milwaukee Brace" for 1 year. I think the brace weighed more than I did. Unfortunetly my Scoliosis progressed to 55 degrees. At the age of 13, February, 1976 I had the Harrington Rod Surgery from T11 down to S1.  The surgery/recovery I will never forget.  I was in Childrens Hospital in Buffalo, NY for 3 months. My doctors were wonderful. After the surgery I was placed in a full body cast for 6 months. Once the cast was removed I was in perfect condition for 17 years. I was very athletic, skied, jogged etc. I started working out and then the pain hit. At the time I was living in FL., 1993, and pretty much looked up an Ortheopedic Surgeon in the phone book, don't ever do that! My lower disks were degenerating from L5-S1 with degenerative facet joint on left side. The doctor decided to take out the Harrington Rod which I have in my possession in a nice bio-hazard bag and placed Pedicle Screws from L5 to S1. I have had nothing but complication since.I had many facet block injections which are a waste of time. I just found out today thru a wonderful Dr. at Johns Hopkins Hospital in Baltimore, MD that the 2nd surgery was botched. The fusion did not fuse properly, the screws were not placed correctly and are loose and I am now looking at a CT Myelogram, which is very painful and most probley a 3rd back surgery. The pain has now progressed from my lower back down my leg and into my right foot. My foot is always numb and cold along with shooting pain in the heel of my foot where sometimes I can hardly walk. I was told today that the Harrington Rod caused complications which the medical world found out in the 1980's and the rod caused "flatback", no curve in the lower back. Now I know why I walk hunched over and trying to compinsate by bending my knees. I urge you all to do your research before jumping into back surgery.  I know from experience. If anyone wants to know the Dr. I am now seeing just post a message and I will give you his name. I thank God I found this sight I and don't feel that I am the only one out there with this dibitating disease. I hope I have answered anyones questions tonight. I feel better for the time being getting this off my chest. Take Care
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Avatar universal
My name is Erle Miles. I had Harrington rod and hooks placed in my back in August 1984. I had it done in Orlando Florida. I am 42 yrs old now. About 4 years after surgery I got a job at a tire retreading company. I was't supposed to do that type of activity but I needed the money. One day I picked a tractor trailer tire. I felt something in my back snap. I immediately knew what happened. 2 of the hooks and screws broke. Strangely enough it did cause any pain. I went back to Orlando and the surgeon told me as long as it did't cause me much pain, he would just leave alone. That was in 1990. I've worked since then in an operating room. I can't count how many times I have fallen and landed flat on my back. I must be real fortunate not to have so much pain. The only time my back really hurts me  now is when I do heavy work(which i know i should't be doing anyway
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Avatar universal
Hi. This is my first time here. I had surgery for scoleosis 22 years ago. I had harrington rods fused to either side of my lower spine. My scoleosis was really bad. About 6 years later I developed a tumor that was benign than 2 years after that another tumor that was alos benign. After that I was fine. But during the last 8 months I have been having the worst lower back pain on my right hand side. At first I thought It was picking my kids up and not using my knees. But I don't think that is it. At night no matter which way I lay my lowers back still hurts. I know that I should go to the Dr's but I am so scared. Especially after reading some of the comments here. I am really afraid. Does anyone have any advise for me? I don't have pain in my legs or feet or arms like some of you. Could someone please give me some advise or more insight?.  Thankyou.
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Avatar universal
Hi Lisa,

I had herrington rods installed(thoracic) 27 years ago so it suprised me to read that. I had cervical fusion c-4 to c-7 in 2004.

I'm not a Dr., but the mri sounds like you have some stuff goin on in the neck that will at least need therapy, maybe more. Thats what causes the arm pain most likely. It also can cause upper back/shoulder/neck pain as well.

Do you have any symptoms in the legs or lower back? The lumbar MRI doesnt sound too healthy either, but like I said, Dont take it from me!!!

I had my rods removed a year after surgery.

Hope you feel better soon. Take it easy on your neck, dont look up or down too far if you dont have to. I was told looking up was the worst.

Take it slow...Mike
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Avatar universal
A related discussion, Pain after harrington rod 27 yrs later was started.
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I have scoliosis since birth and have had 10 surgeries on my back to try to correct it. I had the rods put in when i was a child, but my body rejected them. I don't know much of what actual procedures were done because i was a child when they were done, but I think I was about 10 yrs old when i had my last one. I guess they had done the most they could, a couple yrs later at the age of 12 i was suffering of pneumonia and a few days later my lungs collapsed. it was found that my scoliosis or the curvature was crushing one of my lungs. that resulted me with having a tracheostomy and put on a ventilator to help me breath, after that i became wheelchair dependent as well. all of this was related or caused by the severity of my scoliosis. either way i went on the best i could with my life. a couple years later i began to practice breathing on my own and eventually got to the point to where i only needed the ventilator at night during sleep. that was 8 yrs ago, now i am 22 and everything was going pretty well...it wasn't until 2 months ago that i began having severe back pain, in my upper right back. the pain is sharp, throbbing, and has been so severe as to make me cry and i have gone for a whole week without sleep because of the pain. i have been on several pain killers and nothing works, i even went back to my pediatric orthopedic surgent and he basically had no solution except to refer me to UC Davis to consider reconstructive surgery. I feel like there is no solution to my pain and really don't know much about my condition and if it is normal or part of the process. I guess what i am looking for are some answers or someone that can direct me to the right place or recommend who to go to as far as experts. if anyone knows anything about what i've described above i would really appreciate your input or suggestions. thanks!
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Avatar universal
Thanks for your response. I really appreciate it.  I live in CT and just did a search for the surgeon who did my follow up surgery 8 years ago. Apparantly he retired last year. He was very nice but he was also a pediatric orthopaedic surgeon and probably wasn't even the appropriate surgeon for my case at the time as I was 20 years old and his focus was on pediatric scoliosis. We didn't know where else to go as the surgeons at Yale who did my first surgery back when I was 18 weren't around anymore when I needed the second surgery.  One moved down south (didn't even tell any of his patients he was moving) and the other one retired right after my surgery.  I haven't had any follow up at all in the past 8 years. I did get a recommendation for another orthopoedic surgeon at Yale from another doctor but I haven't pursued it out of fear of having another surgery. Especially because I just got married on July 1st and frankly I'm just scared to go through another major surgery. My first operation was so involved - they took two of my  ribs to fuse the rods to my spine and now my rib cage looks funny when I breath in deep. Also, they tried to give me an epideral in surgery and it didn't take so I came out of a 10 hour surgery with no pain medication - just anesthesia. The doctors/nurses basically "freaked out" that I had no pain meds so they gave me several morphine injections and almost overdosed me. I spent 2 days in ICU and was never supposed to go to ICU in the first place. Recovery, as I'm sure you all remember, was long and painful, and I ended up getting pnemonia from being on my back for so long. The thought of going through that again when I have a husband to think about now...I just don't know what to do. But, I also fear that it's just going to get worse and worse. Especially from reading your stories about what can happen down the road. I thought the back surgery would be a one and done situation. I didn't think I would ever have to go through it again.
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Avatar universal
Hi everyone,
I have read your comments and my heart truly goes out to all of you for the pain and suffering you have incurred from your scoliosis surgeries.  I underwent a 10-hour surgery when my doctors put my herrington rods in my back 10 years ago.  Two years after the surgery, I had to have another minor surgery to cut down one of the rods that was protruding out of the top of my back (obviously not poking through the skin, but you could clearly see the top of the rod when looking at my back).  The doctors said it appeared as though one of the hooks didn't fuse properly and the rod had slipped. I'm not exactly sure what that means but you could see/feel the top of the rod poking out of my back. I don't know if anyone else has experienced this same type of thing, but it has now been 8 years since my second surgery and it looks as though the same thing is happening again.  I don't want to undergo another surgery but it appears to be getting worse and other doctors have suggested that I go back to my orthopaedic surgeon to get it checked out.  The thought of undergoing another major surgery to have the rods removed is terrifying, but I also fear having worse problems down the road if I don't have them removed.  I have heard that there is a possibilty of the rods breaking during childbirth?? I don't have any children yet but I am a newlywed and this is another serious concern of mine.
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Avatar universal
Hi Jan - I cannot believe all your complications. I don't understand how they can puncture you while haveing a CT Scan!!!Did you have a CT Myleogram? They place a needle into your spinal canal at the base of the neck and inject dye to see how much damage is done to the spine and nerves. This makes me nervous due to I am scheduled to have one October 2006. I had this done 20 years ago which was very very painful but was in Philadelphia. I am also from NY but from Buffalo.  They have good doctors there. If you are close I can refer you to one. I live in Jersey so this is why I am going to Baltimore, plus John Hopkins is a wonderful hospital. Only the very sick are seen there. I hope everything works out for you keep me posted. Take care
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Avatar universal
Hi Jan - I cannot believe all your complications. I don't understand how they can puncture you while haveing a CT Scan!!!Did you have a CT Myleogram? They place a needle into your spinal canal at the base of the neck and inject dye to see how much damage is done to the spine and nerves. This makes me nervous due to I am scheduled to have one October 2006. I had this done 20 years ago which was very very painful but was in Philadelphia. I am also from NY but from Buffalo.  They have good doctors there. If you are close I can refer you to one. I live in Jersey so this is why I am going to Baltimore, plus John Hopkins is a wonderful hospital. Only the very sick are seen there. I hope everything works out for you keep me posted. Take care
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Avatar universal
Hello - I am so sorry to here you are having the same problems as so many of us. As far as childbirth, I had my son two years after my 1st surgery and everything was fine. I hope everything works out for you. If I were you I would have that rod taken out its bad news.  It was the only option 30+ years ago they have to have some other options/technology now. I don't know where your from but like I said before John Hopkins in Baltimore is one of the best. Keep me up to date and I hope you are feeling better. I look forward now to all the messages. We are not alone and now I can finally vent to others who can relate.
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