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Scoliosis w/ Harrington Rod (Page 4)

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January 12th, 2011
Scoliosis of the spine
Hi everyone i was born in 1965 with scoliosis of the spine, i had a sivere curve of the spine and at the age of 3 i had several ends of my ribs removed. At the age of 11 i had the harrington rod inserted by dr Piggot at the Royal Orthopidic Birmingham, i found out resantley he passed away last year God bless Him. Once leaving school i was told i can now leave a normal life BRILL !!!!. For the first 10 years i worked on the building as a plasterer then i started getting back pain. Then i decided to get a job sitting down and a friend of mine said get a forklift truck licence. For the next 15 years thats whot i done BAD MOVE.Iam now in severe pain and permanently wheelchair bound, taking lots of pain killers including oral morphine and tablet morphine my life as turned upside down but after lots of counciling i have learned to keep smileing and hold my head up, i would like to say good luck to all of you in the same boat who have had the opertion or if you are going to have it done. GOOD LUCK.
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replied February 27th, 2011
Scoliosis with harrington rod
Hello My name is Elizabeth Everyone calls me Jo for short,,,I am 42 and have scoliosis with a harrington rod in place.the rod starts at my t2 and goes all the way to my lumbar just above my hips. my first surgery was in 1986 then they had to replace the rod after my first child was born. then in 2003 I was in a terrible accident where i broke my neck and back t4 t5 t6 and c1 c2 c3 and wore a halo for that. it was unbareable..I am grateful that i am still alive and able to walk, but I do understand where so many of the folks that posted I am chronic pain not only from my scoliosis where i get muscle spasims all the time, but I also have nerve damage as well, and suffer from fibromyalgia.I have gained atleast 60 to 80 pounds which doesnt help I know,, it only makes thing worse. My problem is I have tryed so many different exercises and I seems to have more pain. I am not on any medications for pain anymore..I stopped all of that. they had me on moriphene and fentynol (Actiq) sorry about the spelling. But what I was wondering was is there anyone that has found relief from the pain. or is this a lifetime deal.Thank you for all your posts it shows me im not alone in the world.
yours truley Elizabeth "JO" if you would like to email me here in my email
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replied March 19th, 2011
Hello everyone I'm Aleta almost 35. I was diagnosed with scoliosis when I was 5 they said my spine was a complete S and was caving into my chest. I had 2 Harrington Rods put into my back. Fom what I was told they had me under local anesthesia because 1 they said I was the youngest child they did this surgery too. (at the time) and 2nd It was bad. After the surgery I had to wear a brace for 4 years only aloud out of it 1 hour a night. My second surgery was on my 9th birthday where they took some of my butt bone an did a fusion.
But I have found over the last couple of years the pain is getting worse in my back. I can't find anything that helps the pain. I'm now trying to get on disability (i have other medical problems as well)It's getting to much to work. I've worked since i was 17 and have always had a job I was on my feet. But if anyone has anything that helps them with the pain please tell me and I can say I truly know what everyone is going though dealing with this for almost 30 years
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replied March 19th, 2011
Harrington rod fusion-help please
Hello,
I have also same problems as you describe. I am 38 years old with spinal fusion with Harrington rod when I was 11 years old. I had 3 children normal birth who are 10, 4 and 3 years old. I had no problems but the last 8 months I have a lot of pain and I am really afraid. I had a CT scan and I developed disc bulging under the fusion and osteoarthritis, the doctor said is too early for my age. I did exercises for scoliosis but then was consulted to do pilates in order to avoid movement of the lumbar spine.
My fusion is from T2-L2. I am afraid to develop a flat back syndrome although I am not fused under L2. I am doing physiotherapy when I find time and sometimes swiming although difficult with the children
I was told by my doctor to work part time as I work full time right now, but I don't know what to do. I love my job very much and I am Head of a Department in a hospital the last 13 years. I don't know what to expect in the coming future.
Can you tell me your opinion please
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replied April 1st, 2011
Scoliosis: brace, Harrington rod, harware failure, breathg probs
Hi, I'm 46 and wore a Boston Brace then a Milwaukee Brace 23 hrs/day for 5 years. It didn't work so at 18 I had 1 Harrington rod fused. After my first child the rod broke, so I had it removed. I suffered increasing pain while working full time and having 2 more children. I ended up with flat-back syndrome, DDD, Stenosis, arthritis, and worst of all osteoporosis. My bones were breaking frequently. In 2007 I had a 360 surgery (anterior/poterior) fusion stretching my original T9-L4 down to S1 and into my pelvis. Two years later I had another hardware failure which ripped me up inside. I complained for almost a year about the new pain before they found the broken rod. The doctors keep telling me about "the domino effect". Last week I had another fusion on my neck C5-6, because I lost all feeling in my right arm/hand.

MY QUESTION FOR ALL OF YOU IS THIS: Has anyone experienced breathing problems like vocal cord dysfunction (VCD)? My vocal cords swell up and choke me until I collapse and pass out. Can it be from my back brace? From my curve? From my many intubations from surgery? I really want to continue to participate in my regular life but the pain & breathing issues, and arm nerve damage are really getting me down.
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replied November 5th, 2011
Msspiney,

I haven't been on this forum very long and just read your post. Have you found the cause of your breathing problems? I hope you are doing better!
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replied September 13th, 2011
Titanium Rods w previous tumor removed from spinal cord
I have had rods in my back for sixteen yrs. To correct a curvature of 120 kyphosis. Just in the past 4yrs I have had chronic severe pain.sciatic,at first then shoulder sharp spasms like pain,severe neck pain and difficulty walking with weakness.Loss of bowels and bladder control,then found a syrinx in my neck from previous spinal cord tumors removed.I have three kids which im very blessed with but my future is disappearing everyday I cant sit stand walk for no more then 5-10 mins without pain shooting down my legs and severe lumbar pain.I go to tons of drs.and theres nothing they can do,They cant even keep me out of pain
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replied November 5th, 2011
I was born in 1960 with congenital scoliosis, although I wasn't diagnosed until years later. When I was thirteen, I had spinal fusion and Harrington rods implanted to correct an "S" curve. One of the rods came loose, so I had a second surgery about a year later in which the fused rod was removed. I am surprised at how many people on this forum had problems with their Harrington rods and related hardware. I thought such complications were extremely rare!

I developed lower back problems in my mid-twenties from doing a lot of lifting. At first, I continued lifting, thinking my muscles were just weak. Then my neck started hurting, too, and I developed weakness and tingling down my left arm (which had been my strongest). After consulting doctors and undergoing tests, I was diagnosed with spondylolisthesis and sciatica. The doctors referred me to vocational rehabilitation so that I could find less physically-demanding work.

I got a desk job, but within a year I was doing physical work again. I went to several different doctors - mostly chiropractors - and was then diagnosed with osteoarthritis in my neck and fibrositis. I finally returned to vocational rehab. I then decided to get my Master's degree in a different field and moved out of state. After graduating, I did temporary work while I looked for a job in my new field. At one place where I worked as a temp, doing clerical work, I was offered full-time permanent employment and I accepted. A few months later, I was given new responsibilities which involved lifting. I tried to tell people that I had a back injury, but they wouldn't listen and some even scoffed. But, I was re-paying school loans and my car soon broke down so I had to buy a new car; I also had to pay rent and utilities, and buy groceries so I couldn't quit without another job.

As the company's workload increased, I had less time to look for another job, plus I was really sick from all of the physical work. I was hurting really bad and had terrible headaches. Many times I didn't feel like eating, have time to eat, feel like fixing something to eat, or feel like grocery shopping. I have always been underweight, but my weight dropped below 90 lbs. (I'm 5'1). Whenever I asked for help or some kind person offered to help me, I was told they weren't allowed to help. My job was only made more difficult, so I learned not to say anything. One year, I went through PT because my right knee and left hip were giving out on me, making it too painful to squat. I developed sharp pains that would go right through me (back and abdomen), making bending at the waist and wearing anything around my waist unbearable.

Due to changes in company procedures, my job became less physical - for a while. I was assigned to another department where I did some filing for one woman. Although I had difficulty with bending and squatting, I didn't complain, but there were some heavy boxes that she expected me to lift. One day I got a sudden, sharp pain in my neck and back when I pushed a heavy box. At home, I did exercises I'd been given by doctors and PT's through the years. My back felt better after a few days (I'd been wearing my back brace), but my neck only got worse. I filed a worker's comp claim. I was diagnosed with a herniated disc and a couple of self-fused cervical vertebrae, was given muscle relaxants and went through PT. I only missed one day of work, but the HR director gave me a lot of grief about it.

I wasn't allowed to do filing any more after the neck injury, but I've continued to have back, neck, hip, shoulder, hand, foot and knee pain. The sharp pains in my back, stomach and abdomen have gradually worsened. It had always been painful to be on my feet, but a couple of years ago, sitting became just as uncomfortable. At the beginning of the year, I developed burning sensations in my legs and my hips were hurting so bad I struggled to climb the stairs at home. After undergoing x-rays, a CT scan, an MRI and a bone-density scan, I learned that my spondylolisthesis has progressed to a grade 3, so now I need surgery. I've also developed ankylosing spondylitis and osteoporosis. I haven't found a surgeon to do the surgery yet, because my scoliosis surgery and the ankylosing spondylitis complicate matters. I am taking several pain medications, one which is a prescription. In the meantime, I have been dismissed from my job (through no fault of mine).
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replied November 26th, 2011
Harrington Rod Fusion in 1970s
I had a single Harrington rod fusion from L2 up to the mid thoracic level in 1976 when I was 19. I'm 54 now. I did really well til 5 years ago and then my lower lumbar area started giving me problems ... I couldn't stand for very long without a lot of back and leg pain. I was diagnosed with Spinal Stenosis which was relieved somewhat by microsurgery. Then more hip and leg pain. Found out that since we're fused, all the joints (not just spinal vertebrae) above and below the fusion take all the abuse our spine would have absorbed. I had to have both hips replaced (Birmingham Resurfacing). Now my knees and feet are getting worse. And my neck. I see a really, really good chiropractor who keeps me going. You have to find someone who can work around the fusion. I do additional neck traction at home on a special table. And I just got a Pilates reformer machine to help strengthen my core ... that's a helping a lot ... it's an Aero Pilates and is $399 on Amazon. You get complete back support and I'm just going slow with it. I walk in a swimming pool when I can. I sleep on a Sleep Number bed with 4 inches of memory foam on top (a separate topper you can get for under $100 on Overstock). You have to keep moving but not overdo it. I use a scooter at work if I have to walk farther than a block or two. It's rough and I'm not sure what my future holds ... I just know that it's probably going to be even harder. I wish you all the best and thank you for sharing your stories ... it helps.
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replied December 11th, 2011
Hello all,

I also have had Herrington Rods placed for a "S" curve with two 65 degree bends.
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replied December 17th, 2011
Stress Shielding
Hello All,

I have been reading through all of your posts because we have many children and young adults in the ABR program who have had the Harrington Rod operations before they started working with ABR. We also have children who had the operations done twice because the rod broke. Now I know that it is not so unusual for these things to break and - in effect - it is not so surprising if one thinks about it. Other children cannot lie down without having extreme shakes, cannot sit, can no longer walk with support after getting the operation.

I am thankful for reading all of your posts, because many of our children cannot speak - so at least one can have an idea about what they are experiencing.

Our colleagues Mark Driscoll , Eng, Phd. and Leonid Blyum have written a paper published in Massage and Bodywork magazine that gives an explanation for the degenerative effects of the spinal instrumentation operations. In this article one can find an explanation for many of the post operative symptoms that you people describe. In effect, through blocking the spine in respect to its movement potential and in addition by adding the rods, the normal distribution of static loading to the body is not only further disrupted but significantly aggravated. The metal that is inserted along the spine acts as a "stress shielder" meaning that the metal - being harder than the other tissues of the body like bones, muscles and connective tissue - then takes all the stresses. The surrounding areas do not achieve the stresses that they need for the body to maintain them through the normal pathway of mechano-transduction. This aggravates further degeneration of surrounding areas.

http://abr-denmark.com/fileadmin/templates /media/pdf/the-presence-of-physiological-s tress-shielding-in-the-degenerative-cycle- musculoskeletal-disorders_driscoll_blyum_2 010.pdf

The post written by Denver Girl above describes this problem. She was told that the areas above and below take all the stresses, and therefore they begin to degenerate. But the idea of stress shielding shows the opposite. Because the metal parts are absorbing all of the stress, the surrounding areas do not receive the stresses that they need. As soon as a body part does not receive the necessary loading and stress in a bio-mechanical appropriate manner, then these bodily parts will disintegrate further.

With Denver girl one can observe how the degeneration follows - from the operated areas, to the areas surrounding the rods, then to the hips. After the hips are operated on then the feet and knees begin to deteriorate.

In the article these progressions are termed downwards cycles. These progressios - or deteriorations are found in patients with cerebral palsy as well as in scoliosis patients.
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replied December 21st, 2011
Chronic pain.
Hi, I'm an 18 year old female, had surgery when I was 13. My curvature was severe, they told me I had a 50/50 chance of surviving with or without the surgery. So I decided to get the surgery... Everything went fine, I was going to physical therapy, gym, chiropractors, even tried acupuncture! Nearly tried everything... Thing is that now I have chronic pain in my lumbar and upper back... Im stuck in bed since 2 days ago. I cant take "weak muscles" for answer. I do my stretches all the time, and I'm fit. Because of the pain I have a fever right now.... I get sudden sharp pains... Kind of like I got hit by a ten-ton truck right in the back and knocked all the air out of me... Not to mention, my ribs hurt as well... I'm too young to be experiencing so much pain. I also have rheumatoid arthritis... I just want to have a better quality of life. Ive gone through so many Ortho Doc's and they all say muscle weakness and knots.... Sad I just don't want to keep relying on meds either... They had me on morphine and 600mg on ibuprofen. But it makes me feel nauseous.... :/ hmmm.... Its comforting to know there's people going through the same stuff.... Sad

-Jazz
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replied January 6th, 2012
Hi. My name is Becky. I'm 27 years old and had Harrington rods put in when I was 14. Ever since then I've been in pain. I have 2 kids, one is 1 and the other is 7. Eversince I had my second child my pain has been worse and lasts 24/7. I'm on vicoden and Somali but it doesn't seem to help AT ALL. I've had injections, epidurals, physical therapy, just about everything I've tried and nothing helps. My doctor says that everything looks fine. I'm sick of hearing that. If everything was fine then I shouldn't be in this much pain all the time. Do you have any suggestion on what else to do. And I'm glad that I'm not the only one that feels this way
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replied January 17th, 2012
This is all very interesting to me. I have had 2 Harrington rods and fusion from t2 all the way down past my waist for 10 years and I never knew so many people had the same problems that I've had. I was told that I needed the surgery because my 60/40 S curve at age 12 was dangerously close to compromising my heart and lungs. It was a terribly long and painful healing process, but I got used to it after a couple of years. I've had back pain and scoliosis since I was a little kid, so after the surgery, I just figured that was a part of life. Since I was about 15 I have had chronic back pain due to the surgery.
I haven't read about this yet, but after my surgery, my right side was no longer symmetrical to my left side. My left side is normal, and although it hurts sometimes, it's nothing more than tired muscles. My right side, however, is just not right.... My shoulder blade sticks out (forward and to the right a little) so that the muscles in that area are made to stretch incorrectly as well as some of them not even being in the right place. As you can imagine, those muscles are pretty tight.... Massage therapists have to use their elbows and all of their weight just to relax those muscles even a little bit. Also, my mid back toward the bottom of my rib cage is not flush with my ribs on the left side, so it causes that side to twist in a weird way when I lie flat on my back which causes pain when I wake up in the morning because I always wake up on my back. It's even more obvious because my collar bone on that side even sticks out and is not even with the other side, and pretty visible if you are paying attention.

Another issue I have is that I have Marfan syndrome. Most of you have probably never heard of it; most doctors have never even seen it, and will most likely never come across it, let alone diagnose it even if it was there. Basically, it's a genetic mutation that effects fibrilin, which is a main building block for all of the connective tissue in the body. There are many other factors involved, but for the sake of this forum, I won't get into all the gory details. Basically, all of the connective tissue in my body is weaker than most peoples'. This includes joints, muscles, etc. I have always had weak joints, but just in the past 2-3 years I have noticed some problems with my hips: they pop in and out of the socket all day long just doing basic everyday activities. Usually I can pop it back right away, but if I don't, it cause one hip to be higher than the other and therefore, one leg is shorter than the other while I'm walking, and after a few hours of that, I can barely move, let alone walk.

Nothing OTC works for any of it, and I have not had any luck with muscle relaxers. Most of the time I just put up with it and my boyfriend gives me a massage any time I ask him to, but sometimes it's just unbearable. It's especially bad during the winter in central Florida. It never really gets that cold, but it goes from the 30s-40s to the 80s overnight or vice versa all the time, and then I wake up in the morning and can't move I'm so stiff. Which brings me to the reason I found this forum. I had a very busy weekend at a huge convention across the state where I had to stay in a hotel. I rarely have and kind of problem with this, so I thought nothing of the bed I was sleeping on. It was $200/ night hotel, so i figured the beds would be pretty good, and I slept amazingly well both nights I was there. THEN I woke up Saturday morning (the last day I was there) and I felt like I REALLY needed to pop my back on the left side because I all of a sudden had sharp, burning pain there every time I moved. It wouldn't pop, so I just figured it would work itself out throughout the day because I was just stiff or something. It has now been 3 full days of severe pain in the same place next to my left shoulder blade. My boyfriend has massaged it, popped it, stretched it, iced it (he really is a great boyfriend Smile) and repeated for 3 days. I have taken loritabs, Tylenol arthritis, a bunch of muscle relaxers, and aspirin with no improvement. At this point, it can't be touched, and every time I ask lance to rub it he stops because it is hurting me so much. He barely even touches the area and I squeal in pain. Tonight it got so bad I was in tears so he got me an ice pack and I managed to prop myself up sideways in a way that I could lie down with the ice pack under me while putting the least amount of pressure on the area as possible. Did that for about a half an hour and then took a hot shower, which really helped. That's when I started googling things because I don't know what to do, and that's when I found this forum. Chiropractors are afraid of screwing up my fusion and such, so he only works on my neck and hips, and I'm at a point where I'm afraid I am going to need prescription pain meds on a regular basis and I'm only 23. I'm calling my doc for an appt tomorrow to see what he thinks. I kind of want to go to another ortho person and get some more opinions. I'm really wondering now if I should get all the hardware removed and everything fixed before I start having kids and while my life is not very strenuous. I have no idea what to do....
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replied March 7th, 2012
Vibration Machines as exercise with Harrington Rod
Has anyone with a Harrington Rod used a Total Body Vibration machine as exercise?
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replied March 17th, 2012
Harrington Rods and whole body vibration exercise
Hi Mindweaver. Thank you, it's because of your question that I found this website - searching Harrington Rod and vibration exercise machine. After reading a couple pages of posts (will get to them all eventually) have definitely decided not to chance it. Vibration will shake loose almost anything eventually and it's not worth jeopardizing the rod. I was diagnosed age 13 and at that time the curve was in the 30s - the doctor said it would probably be fine since I was already a teenager (it was very painful, especially during the growing years). By age 21 (1975) it seemed worse so I went back to the Dr. and the curve had progressed to the 70s - he decided to operate. None of the records exist anymore, they wouldn't give them to me and the Dr. has long since passed on. The spine was fused, a rod put in (body cast 9 months) and a year later a rib resection done removing 26 inches of rib (6.5 inches out of each of four ribs) to make me look straighter. The operations made me a couple inches taller but it hasn't lasted. Just diagnosed with very severe osteoporosis - especially in my arms (-3.7) which have never been very strong. As for exercise, in general, I find Pilates to be effective and the safest exercise (mechanical equipment usually ends up in an injury it seems).
I have had the burning pain in my left shoulder blade of and on since about 1994 - use obus forms to sit on (piano, computer, kitchen table, car) and that helps. Can't sit or stand anywhere for long, always have to keep moving or else get stiff and sore. So glad to have found this forum and will follow it from now on. Trying to get a referral to an ortho right now since the bone density test said my lumbar spine is such a mess they couldn't get a reading on it.
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replied April 15th, 2012
Hello my scoliosis was found at age 8 and my spinal fusion was done at the age of 12.I have the harrington rods placed from the base of my neck all the way to my bottom.At age 21 a piece of the hook had to be removed as it was protruding out of my back.I am now 23 yrs since my original surgery and having pain in my lower back.I cant stand long and I cant sit long.I am going to see an ortho doc the begining of May and I am very nervous as to what is going on.
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replied April 19th, 2012
Hello all.
Wow. I didn't realize so many people were having problems like mine. I had Harrington Rod placement in 1987. I had an S curve of 63 degrees and was told if I didn't have the surgery my spine would eventually snap. I have idiopathic scoliosis. I fell out of a tree in Jan 1987 and by June 1987 the S curve appeared as I hit my growth spurt at that time. So it happened really quickly. I did well after the surgery with mild lower back pain, but I just assume some pain was expected.
The beginning of 2009 I started having problems. I have developed Paget's Disease, and my L3, L4, L5, are all getting stress fractures that aren't healing. Plus the Paget's Disease is making the vertebrae become enlarged and brittle. I have gone from a full time job to barely being able to walk. I'm losing height due to the stress of the crumbling bones. And I have started to notice that I'm leaning to the left much more. My pain is now completely out of control and my health is getting worse.
When I got my rods my Mother and I were assured that the rods would keep the curve from getting worse. And now I'm leaning more than ever.
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replied April 21st, 2012
Harrington Rod and pain
hi
I had surgery for a 80 degree curvature back in 1978 - when I was 20 - at Rowley Bristow Hospital, West Byfleet, Surrey (now a housing estate). I played soccer again when I was 24 until I was 30, having to give up because of my knees, not my back... I trained kids soccer until I was 46 and have fathered 3 boys.
Only in the past 2 years have I really started to suffer from pain in the lower back and I find taking COLLAGEN supplements each day, that they make a real difference to my mobility. They really do help... I have the onset of arthritis due to the surgery but as I have had an extra 20 years plus life expectancy, I do try to think positive and have never let this surgery stop me... try the supplements... may help.
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replied May 21st, 2012
Wow, this is great to come across!!! I am 32 right now, and had the Harrington rods put in when I was 20, after wearing the Modified Milwaukee brace for 8 years (and then 2 years without it). I had a reverse-S curve, top was about 55 and bottom 48 when I had the surgery performed. I was up and at em the day after the surgery, and released from the hospital a day early (I've never been one to sit around and whine about the pain, I just got up and did what the PT told me to do and then some- I wanted OUT of the hospital and back to college!!!).

I have since delivered 2 children naturally (couldn't have the epidural because of where the bottom clip was located). A few years ago, I developed a hole in my back, along the original incision line (which was so faint because my surgeon was AWESOME and there was hardly a scar to be seen!!!). It started oozing, and my hubby brought me right to my PCP. After visits to several other doctors (and a round of antibiotics from one 'surgeon' who was convinced it was a skin infection), I wound up back at my original surgeon. We discovered that the rods had become infected. Most likely, I picked up some sort of infection while in the operating room from that original surgery. It had now spread, and had run out of room inside my body, and the easiest way out was through that already-weak spot in my skin on my back.

At age 30, I had another surgery to remove the rods and clear the infection. The infectious disease team reported back that it was life or death at that point- the infection was osteomylitis, and it's bad enough that it's usually found in autopsy. I got LUCKY!!! I was informed that another month with that infection in me, and it would have eaten away enough of my bone that I'd have been paralyzed from the neck down. 6 more months and I'd be dead. Crazy to hear when you're 30 years old and have a 4 year old and 2 year old at home waiting for you! I was on IV antibiotics for 8 weeks (walked around with a PICC line at home, because I REFUSED to stay in the hospital!!!) after the removal surgery.

After that surgery, I gained a LOT of weight. I have since lost about 25 pounds doing Weight Watchers, but still have another 15 to go to get back to my 125 (I'm 5'5"). I came searching for exercises I could do that wouldn't cause me pain like so many of the ones suggested by friends, but am glad to see that I'm not the only one who suffers from chronic back pain. I have forced myself into a very high pain tolerance. I refuse to sit around and feel sorry for myself. I will NOT miss out on anything with my kids because my back hurts. I do everything I want to (within reason, of course!!!). If it hurts, then I don't do it again. I have never taken anything stronger than an Advil for pain (even after the surgeries- I have full bottles of Percocets in my medicine cabinet because I won't take them).

My best advice- use it or lose it!!!! If you sit around and don't do something because you're afraid it'll hurt, then by the time you finally go to do it, it will hurt. Just get up, get out there, and live your life. Smile
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replied March 21st, 2013
Wow new here and I'm 35 I had surgery when I was 11 in 1989. I have the Harrington rods and have been having lots of problems for about 10 years now. Seems like the drs just want to dismiss the pain I have as muscle spasms I have been told I have disk degenerative disease. And some form of arthritis I don't remember what my pain dr called it. Did not know there was a lot of people who have the same problems as I do. Need to find a dr in Colorado area ( springs or Denver) that specializes in scoliosis and the Harrington rods. I live in a small town. So pueblo, springs or Denver are the biggest cities where most of my drs are at.
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replied March 21st, 2013
Hi, I thought I posted a message on this board last year but it looks as though it didn't get through.
I had surgery for double scoliosis when i was 14, in 1978. I have a harrington rod that goes from the top of my spine to the third lowest disc of my spine. I wore a plaster cast for 6mths then a back brace for 3mths. I've always experienced some back pain but it has really increased in the last 10yrs. I also have a real slouch - flat back syndrome? I have a desk job and I'm sure this has aggrivated my condition.
Anyway, last year i fell over and really hurt my back. I started seeing an Osteopath and she made it worse - the pain was shocking. In the end my GP referred me to a neurosurgeon. He took one look at my xrays and told me my spine was a mess. That my lower two discs were disintegrating. Apparently they had been doing all the work for the last 30 + years (as the rest of my spine was incapacitated by the Harrington Rod). He told me to make major changes to my lifestyle.
No physiotherapy, osteopathy, chiropractor etc, Not to stand for long periods of time,no twisting and NO bending from the waist ever again(this is incredibly hard -we don't realise just how much we bend).
He also said i need to walk twice a day for 25minutes, sleep flat on my back on a firm mattress as much as possible (get gravity off my spine), lose weight and wear a back brace for 6mths. The aim is to protect my spine so that it can slowly try and heal itself a bit.

We bought a new memory foam bed, which was a disaster. I started to get sciatica every night. We luckily managed to exchange it for a firm traditional mattress which is terrific.
I'm not walking as much as I'm meant to and because it's been so hot in Australia, I haven't worn the brace as much as I'm meant to. I've lost weight,which has helped and I'm not taking pain killers as much as i used to.
Hopefully this will make things improve. If things get worse he recommended spinal fusion, but because my spine is in such a mess it would mean a fusion in the pelvis - not nice.
I wish you all well and i hope you manage to improve you situation.
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