Pain after harrington rod 27 yrs later

Question

I've been reading all of these posts for awhile now, and doing my own research. I had my Harrington Rod surgery in 1983, entire length of my back. Had two kids, and am now 42. My God, they never told us what would happen years later..not that I had much choice..my curve went from 42 degrees to 78 in a year..not too many choices. I never had a problem..in fact, I forgot about it most of the time. I was very happy that I had no pain..but now for the last six months I've had excruciating pain in the lower back. I've attained a bachelors and masters degree and run an agency..very proud of my accomplishments as I had no parents or family growing up. Now I can barely sit without popping OTC meds every two hours. I certainly don't want to ever stop my career but I can't believe how much pain..like a toothache..constantly..that I have. I've just changed to another doctor bc my last one was all about taking herbals ...are you freaking kidding me?! I fought back from a pancreatic tumor and spleen removal 4 yrs ago and that was cake compared to this! I really, really don't know what to do..never had my spine looked at in 27 yrs. But now I have to go, and talk to the new Dr., but I don't really know what they can do. I have a first grandchild due in May and a loving husband but Im in the bed by 7-8pm the latest these days when all I was was active before.

This discussion is related to Spinal pain 30 years after Harrington rod surgery for scoliosis and MRI results.

Kelly199243 · Answer

I have read so many stories that truly mimic mine. I had surgery in 1992 when I was 17 years old and had Herrington Rods placed.  My life after surgery was great I gained 3 inches and truly didn't feel any pain.  My trouble started around 5 years ago in 2012- one day I bent over and when I went to get up my low back hurt so much. I went to a dr who had me go through physical therapy, injections and a razotomy which strangly I believe caused sciatica pain in my left leg.  Regardless my pain gets worse and worse and I don't want to keep doing the same thing. I am having a test of the spinal cord stimulator done soon and hope that it works to reduce my pain.  I wonder all the time if my Rods are meant to last until I die or if I will be forced to do something eventually.  Maybe someone knows that answer!  Thank you for listening.

Atwitsend1257 · Answer

In 1969, at 12 years old, my gym teacher noticed I had scoliosis. She also had scoliosis as a child and knew what to look for. I've often wondered how much worse it would've gotten had she not brought it to attention, because my mom thought I was just standing like Twiggy, a model that had become popular. My parents took me to many doctors before we found Dr. Kenneth Leatherman in Louisville Kentucky. He was genuinely concerned about my condition and spoke directly to me. That was a first, and he earned our trust. We had no idea that one day he would have a great honor bestowed upon him, because of his compassion, knowledge and skill...Norton Leatherman Spine Center in Louisville is named after him. At 13 yrs old, I was fitted with a Milwaukee brace which I wore for 23 hrs a day for 3 and 1/2 years to prevent the curvature from progressing, until I had most of my growth. In 1972 was admitted to Kosair Shriners Hospital, and was in traction to stretch my spine for a few weeks before surgery. Dr Leatherman did the corrective surgery, which took about 12 hours, with fusion and Harrington rods at Norton Hospital (Louisville,Ky) in 1972. I was told not to turn over and laid flat in the hospital bed for a several weeks to heal. After that I wore a body cast for a about 6 months, it went past my hips so I could not  sit, I could either stand or kneel or lay down. Went back to school (after being home schooled for a period of time), but had to kneel at the back of class. Got put in a small back brace my Senior year of high school and finally got my drivers license. Went relatively pain free for almost 20 years... got married, had a baby girl, worked and lived my life. But then my lower back began to hurt doing every day things, it interfered with my job and was put on pain meds to help cope. My doctor ordered restrictions for my place of employment, but my job description was still quite demanding and after months of trying to hang in there, I was put on medical leave. It's been 16 rough years of trying to find solutions for the pain...had a Medtronic nerve stimulator surgically placed in my right lower back but it never did control the pain so I had it taken back out several years after that.  Have tried  back braces, had nerve blocks,  most of which never helped because of the rotation of my spine. Have been prescribed so many pain meds, then anti depressants & sleeping pills. The depression and anxiety are as bad as the pain. I have tried getting a part time job just to get out of the house, but now the pain is worse than ever. I have noticed that the bottom of the Harrington rod is starting to protrude at my lower back, it is very disturbing and perplexing. I have shrunk about 2 inches over the past 15 years, and have degenerative disc disease.  That rod is not shrinking though. Only have Medicare, and cannot get an insurance supplement for another 5 years. I can't make it...  I absolutely don't know what to do.

jenpenhen · Answer

It's truly a relief to findy our story and others here. I'm 48, and had harrington rod surgery at 14, in 1982.  I have been experiencing lower back pain for 3 years now-and trying different things to help.  Losing weight does seem to help alot.  I still have 10 lbs to go, but losing 15 in the last 3 years has helped. Eating well seems to help-avoiding sugar as much as I can (so hard for me!), and determined to eat lots of veggies. Swimming in cold water helps me a lot, and that's my preferred exercise. By swimming, I mean moving in the water (not touching the bottom)-even treading water-for 30 minutes. There is also this cool thing called water jogging now-you put on a float belt-which keeps your head above the water (and also gives lower back support) and you jog without touching the bottom.  Sometimes I don't like to swim, so I do that. For me riding a bike is great too-I just make sure the road surface is even when my spine is hurting. Laying on the floor on my back is great for relaxing my muscles around the vertabrae. I havent tried hanging yet-but I hear it is great releif on the spinal chord.  I also walk as much as I can.  When I can't exercise every day, the pain comes back. My doc says my rod is still in tact, but that I have the beginnings of arthritis and herniated disc. I've just decided to deal with the pain, and continue to try all the stuff that works, including losing the last 10 lbs. I don't want more surgery unless the pain makes me unable to work or move.  Anyone else out there tried acupuncture-for real?  Also, what kind of mattress do y'all like best to sleep on?  Sometimes if I visit friends or family, the mattress is so soft, I opt to sleep on the floor-because it is more comfortable for my back (harder on my hips though!). My family thinks I am nuts.  Anyone else have this?

mawmawreeree · Answer

June 7, 2016...Is this site still active? I have questions about the harrington rod and do not know who to ask. My surgery was in 1971.

crazytalk397 · Answer

I just read your post made several years ago about your harrington rod placement. Like you I had mine done at New England Baptist Hospital in Boston in 1980. At that time it was like an assembly line of patients getting Harrington Rods put in. 
   I had my initial back fusion done in the mid 60's when I was just a kid. I was not one of the lucky ones where the scoliosis was minor, I had to go to school with a brace the first year. I found out years later that the reason for the bracing was to stall for time until I reached the age where my growth rate slowed then the following year I had a body caste and a caste on my leg where they took pieces of bone for the grafting to my back
.. I really didn't have much pain after the first fusion until  I was about 27. Trying to find a doctor who would take more than an x-ray and ask why I had it fused in the first place was a nightmare. I had all but given up hope until I wrote to the Layhey Clinic about my situation and they recommended two one was the Children's  Hospital  which only worked with children with scoliosis and the other was Dr. Wright. Dr Wright took me on as a patient. You might say I was considered a learning tool for other doctors that he was training. I was a patient of his for over 15 years. The first of several operations he did was the Harrington Rod to replace the old fusion that was breaking away which was causing the pain I was having at the time. I wasn't aware of other skelital deformities I had until they raised their head. My body was like a couple of teeth that needed root canals. Once one was fixed the other would kick in much was my problems with my back He had made notes in his reports that things might go wrong but never told me. I could understand that because people had a tendancy to think something is wrong when it really isn 't.. It was like trial and error you might say. He tried everything possible before telling me the only option left was another operation. I was hoping that at least once he would tell me he found nothing when he operated but every time he told me he found more damage than what showed on the x-rays. the last thing  I found that unlike most people I was born with only one opening between the discs in my neck. The normal person has seven. When I was growing up several times people would ask me if I had a stiff neck, I always related it to the back surgery.
There is so much more I would like to discuss with someone who has undergone the same things I have.
I

MayP · Answer

It appears most people posting here are post op by a lot of years, my story is so similar..two ops in 1984 at 28 years old to correct severe scoliosis. Lucky to have an excellent doctor who has since retired, no pain ( or minimal for all these years)! Considered myself lucky...but recently, I am getting severe pain after doing simple tasks (most times just low impact gardening, like pulling weeds) The pain radiates through the right hip and stops me from sitting comfortably or getting up in the mornings without crawling until I can pull myself up on a bench or table. Still lucky that the pain will subside after a few days, then come back with any light bending. Anyone found an answer, thinking walking and stretching at this stage might be beneficial.

lighthousegirl · Answer

Hi Pencilgirl, I sent you a personal message.

pencilgirl · Answer

How are you doing now? Are you having any revision surgery? Were you able to receive  SS? I have flat back, in extreme pain and I am considering the PSO revision surgery. pedicle subtraction osteotomy. Scared.

lighthousegirl · Answer

Hi Wendy, I have not had an MRI yet, but have read that it is best for the tesla on the MRI to be 0.3. States 1, 1.5, 3 or 7 are considered unsafe. I read it can cause the metal rod to over heat causing a burning sensation. I can't remember the site I saw it on, but look up diagnostic imaging of spinal fusion and complications. Best to you on the MRI and finding relief from this pain.

Wendyk523 · Answer

I had Harrington Rod surgery. Mine was in 1982, I was 15! I have had back pain for years, sciatic pain, vascular issues in my legs, but now I am having the right hip pain so bad, I have trouble putting on pants. I am scheduled for an MRI and was wondering if anyone has had an MRI since the surgery and if they had any issues or reactions during the MRI that I need to be aware of.

Wenpo · Answer

Hi, it was nice to read about someone else being in a similar situation today.I too, had spinal fusion and rod put in many years ago. I was 15years old then in 1981, and now I am 48 years old. Up until very recently , I have had no severe pain, only the dull aches now and again, which is some what expected. lately, I have been having aching in my right hip, from where the bone graft was taken, but I simply put it down to my age and possible arthritis. if I wake up with lumbar, hip pains I simply do some stretching exercises and get moving around, then find the pain relieves itself.
It has only been today that I went for an updated X-ray, for record purposes only, which I paid for privately, to take to a physio here in Spain.This is to help me work out a regular exercise routine , in the hope it will alleviate possible  future posture, pain , stiffness or mobility problems as I get older. I was never given any exercises to regularly do and was wondering if anybody else has had such advise after 33 years post op. X

almost40yearslater · Answer

Hello~  I was diagnosed with scoliosis at age 13 with a 55 degree curvature.  I had Harrington Rod placement the same year.  I am now 51 years young and have not been limited whatsoever up until the last year. I awoke a day ago to extreme pain in my right hip area which is the one that was used to graft bone for the spinal fusion. When revisiting what could have aggravated the area I recall moving several moderately heavy boxes in my office which most likely strained the area. 24 hours later I am beginning to feel some relief with the use of OTC meds.  My older sister was diagnosed with scoliosis shortly after I but did not have the surgery.  She now has a visible hump on the right shoulder with severe misalignment and chronic pain.  If I had to choose I would have the surgery.  Good luck to your niece.

lighthousegirl · Answer

I had harrington rod surgery back in the early 1970's after wearing a back brace for 2 years for the s curve. Did well for many years except a random backache. As the years went by started having fibromyalgia like symptoms. Around 12 years ago it started getting worse. The past two to three years it has taken me over with constant pain and fatigue. I also have filed for ssdi after working for over three decades. You are right, everyone gets denied in the beginning, but keep trying. I'm 55 and understand how you feel. I was very active too and it is depressing to be like this now.

flatback80 · Answer

Gini.

I have similar issues.  My rod was put in 1980 at the age of 18.  I am 51 now.  I stay very active, but still have to deal with alot of pain.   You should be aware that when applying for disability that you will be turned down the first two times you apply.  That is standard.  They do that everyone regardless.  Try a third time and hire a disability attorney if need be.

flatback80 · Answer

Gini.

I have similar issues.  My rod was put in 1980 at the age of 18.  I am 51 now.  I stay very active, but still have to deal with alot of pain.   You should be aware that when applying for disability that you will be turned down the first two times you apply.  That is standard.  They do that everyone regardless.  Try a third time and hire a disability attorney if need be.

Gini1969 · Answer

I had progressive scoliosis and kyphosis.  At the age of 25, I spent an entire month in the hospital with two separate surgeries for fusion and Harrington rod implementation.  Six months in a body cast.  I spent the following 33 years virtually pain free.  Then the pain started coming on.  First with sciatica and muscle spasms from exercise.  Then low back pain was excruciating where the pain radiated down into my left knee, causing my knee to give out, numbness in my left foot.  Went to a doctor who referred me to a Pain Clinic where I was given epidurals with fairly good results.  But, then I started getting SEVERE neck/shoulder pain to the point of being debilitating.  I cannot sit for long periods of time.  I cannot stand for long periods of time.  Cannot even stand to wash dishes without this pain.  Have tried several part time jobs and none of them worked out due to the pain.  My doctor has long since retired.  The doctor's office and hospital no longer have my records.  I have tried to apply for disability, but have been turned down.  My MRI shows multiple problems: Multilevel degenerative disc disease, spinal canal narrowing, neural formainal narrowing, cysts, disc bulging, stenosis, bilateral facet arthropathy, etc.  

I am finding I have extreme weakness now, too.  Fibromyalgia symptoms.  Have difficulty getting in and out of a bath tub or even lowering or lifting myself off a toilet!  

It's all rather frightening and wondering if anyone has any suggestions or answers as to what direction I should go in here.  I want to find relief, as well as be a functional human being again!

mcktpsnd · Answer

To follow up.  I did have my consult two months ago at Baptist Hospital in Massachusetts where I had my initial surgery in 1982.  After a series of scoliosis X-rays as well as an MRI they were able to note slight "flat back" syndrome but no nerve compression which I am very pleased about. The flat back syndrome is moving extremely slowly and I have an excellent prognosis.  My pain has improved but as I said in my past post it is easier to live with knowing that the pain is not being caused by a compression or from causing damage.   The alternative surgery for flat back syndrome is extreme and can actually be worse than the initial surgery--- because of the slow progress that is not an option for me --- I actually do not think that surgery would every be an option for me at my age.  My strong suggestion to everyone is to consult with only physicians that are experts in scoliosis in a hospital that is a quality state of the art for scoliosis surgery.  It is a defined expertise and truly should not be treated by any one other than an orthopedic surgeon that specialized in scoliosis.  To treat this issue with herbs or narcotics is not a reasonable approach, especially regarding maintaining a quality life.  I can recommend the Baptist Hospital in Boston as one of those facilities and if any of my children were in need of a scoliosis consult that is where I would go.

archee · Answer

Hi I am from Mumbai, India and my niece 13 yrs old have been diagnosed from scoliosis recently with almost 55-60 degrees curve  in thoracic region and has been suggested for surgery with implants. After reading on this site i am very scared of the future as she is just 13. Would like to know is surgery the only option and what will the possible risks after 30-40 yrs of her life. I am consulting Dr Abhay Nene from P.D.Hinduja national hospital & MRC and i know that he is one of the best spine surgeon in mumbai.

mcktpsnd · Answer

Hello,  Your story is very similar to mine except I am sixty-eight and had my harrington rod insertion in 1982 when I was 39.  Big time surgery as we all know, but with progressive scoliosis we all are looking at COPD and potential right sided heart failure with out it.  I have no regrets having the surgery, however, I also live with constant pain.  First thing I did not know was regarding the neck deformity (crane's neck) post rod insertion.  The other thing I was not aware of is the potential ultimately for flat back syndrome which causes constant pain and eventual difficulty standing when extreme.  Right now I am in the process of having an MRI and CT scan at the Baptist Hospital in Boston where I had my initial surgery to evaluate my options.  The most extreme option it seems for the lower back pain is quite extensive and can involve additional rod insertions and fusions to lower back to put the back into alignment.  My decision will be based on prognosis not necessarily to relieve the pain.  I also have neck and shoulder pain from the neck deformity but I will live with that.  My attitude is that I can live easier with the pain as long as I know that the pain is not indicative of further damage being done.  I am very active and just retired from a long busy career in nursing and want this time to enjoy my grandchildren and to travel.  So glad that I found this site.  I hope to read a posting of how you are doing.

mcktpsnd · Answer

Hello,  Your story is very similar to mine except I am sixty-eight and had my harrington rod insertion in 1982 when I was 39.  Big time surgery as we all know, but with progressive scoliosis we all are looking at COPD and potential right sided heart failure with out it.  I have no regrets having the surgery, however, I also live with constant pain.  First thing I did not know was regarding the neck deformity (crane's neck) post rod insertion.  The other thing I was not aware of is the potential ultimately for flat back syndrome which causes constant pain and eventual difficulty standing when extreme.  Right now I am in the process of having an MRI and CT scan at the Baptist Hospital in Boston where I had my initial surgery to evaluate my options.  The most extreme option it seems for the lower back pain is quite extensive and can involve additional rod insertions and fusions to lower back to put the back into alignment.  My decision will be based on prognosis not necessarily to relieve the pain.  I also have neck and shoulder pain from the neck deformity but I will live with that.  My attitude is that I can live easier with the pain as long as I know that the pain is not indicative of further damage being done.  I am very active and just retired from a long busy career in nursing and want this time to enjoy my grandchildren and to travel.  So glad that I found this site.  I hope to read a posting of how you are doing.

DrSharma · Answer

Hi there. There are so many possibilities following Harrington rods surgery done long back causing severe pain now. Did you follow up your surgery with vigorous physical therapy? An intense physiotherapy should have been followed up after the spine surgery and would have done much benefit. Fibrosis and scars following the surgery could be entrapping the nerve roots in the vicinity causing severe pain. The rods or implants themselves ‘could be causing the pain. Consult your neurosurgeon with these issues and check what he can best do. A pain physician consultation is also warranted. Take care.