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scoliosis, 13 years after surgery, pain and worsening curves
I had surgery to correct my scoliosis 13 years ago, when I was 12. When plans for the surgery started, I had about a 50 degree curve. Something like 8- 10 months later, when I was going in for surgery, I had progressed to a 70 degree curve. I got 2 Harrington rods, and was fused from T2 to T12. I guess I recovered very quickly. They sent me home after 3 days. I was up and walking with no assistance by then, so I guess they figured I was good to go. I was kept home from school for a month to rest and recuperate, and was then told to take things very easy for the next 3 months.
In all this time, I have always had some degree of pain, but it has gotten worse as the years have gone by. I seeto have the complete opposite problem of "flat back." My lower spine has a tremendous curve. My husband can lay his arm underneath my back without me touching it when I lay down on my back. My lower back constantly hurts, but I have just learned to live with pain. About 5 years after my surgery, they had me take physical therapy to try to relieve my pain, but it was really ineffective. The way my spine is curved and locks, I can't do most of the back strengthening exercise. I have tried strengthening my stomach muscles, but sit ups are very difficult to do, and I end up having so much pain in my back that I spend the next few days even less active then I was before. I have tried lifting weights with my husband, but I can't follow proper form to do any shoulder strengthening exercise. Carrying and giving birth to my 2 daughters has seemed to cause my lower back curve to get much worse. I carried very heavy and all up front.
The pain alone is bad enough, but my body image is taking a real beating as well. The curve in my lower spine is SO obvious. My legs have a noticeable difference in length, and my hips are very crooked. My rib cage is very distorted. One side is like a barrel, and the other is very crunched. The bottoms of my ribs overlap and rub the tops of my hips. I have such a hard time losing weight, since exercises that target my core and waist cause me so much pain afterwards. The problems with my ribs interfere with my breathing, so too much cardiovascular exercise causes me problems as well. I have tried so many times to just push past it, but while my mind might be willing, my body just plain says "no."
Is there ANYTHING that can help fix this? I don't even know if removing the rods at this point would be a good idea, since my back muscles are so weak. I am open to any advice or suggestions!
In all this time, I have always had some degree of pain, but it has gotten worse as the years have gone by. I seeto have the complete opposite problem of "flat back." My lower spine has a tremendous curve. My husband can lay his arm underneath my back without me touching it when I lay down on my back. My lower back constantly hurts, but I have just learned to live with pain. About 5 years after my surgery, they had me take physical therapy to try to relieve my pain, but it was really ineffective. The way my spine is curved and locks, I can't do most of the back strengthening exercise. I have tried strengthening my stomach muscles, but sit ups are very difficult to do, and I end up having so much pain in my back that I spend the next few days even less active then I was before. I have tried lifting weights with my husband, but I can't follow proper form to do any shoulder strengthening exercise. Carrying and giving birth to my 2 daughters has seemed to cause my lower back curve to get much worse. I carried very heavy and all up front.
The pain alone is bad enough, but my body image is taking a real beating as well. The curve in my lower spine is SO obvious. My legs have a noticeable difference in length, and my hips are very crooked. My rib cage is very distorted. One side is like a barrel, and the other is very crunched. The bottoms of my ribs overlap and rub the tops of my hips. I have such a hard time losing weight, since exercises that target my core and waist cause me so much pain afterwards. The problems with my ribs interfere with my breathing, so too much cardiovascular exercise causes me problems as well. I have tried so many times to just push past it, but while my mind might be willing, my body just plain says "no."
Is there ANYTHING that can help fix this? I don't even know if removing the rods at this point would be a good idea, since my back muscles are so weak. I am open to any advice or suggestions!
I am seriously hearing your pain...It is so great posts like this exist so we can all talk. I had Harrington rods inserted down the full length of my spine when I was 16. Wore a milwilkee brace for 5 years prior. Top curve 47 degrees, bottom 35 degrees (immediately prior to surgery). It got worst as I grew from the age of 12 - the brace only managed to hold the curve in place. I am 31 years old. I want to have kids which I guess is what brings me here.....???????..... About 6 weeks ago I lifted something I have since realised I shouldn't have (I try to pretend I am normal and this time the pain I have been in has been a serious wake up call to both myself and others I work for).
One of the problems I find is that when you look okay on the outside people assume you are fine - you don't have an arm or leg missing - it is hard to explain to them until you show them the x-rays what exactly is wrong with your spine - I am slowly learning as the years go by that it is up to me to say "no I can't do that". It has taken a long time for me to learn what I can and cannot do and as I get older I am experiencing more and more limitations.
I've been laid up since I first hurt myself 6 weeks ago with serious crunching on my left side - I could hardly walk. There was an excruciating throbbing in my spine all the time - around the tailbone area, when I sat, or slept I could not relieve the pain. It was horrific - I thought it would never stop.
But what I wanted to tell you all is that MASSAGE HAS REALLY HELPED! Not a physio - but chinese massage. They gently got stuck into the area that kept crunching when I walked (down my lower lumbar left right along the side of my spine). After 5 x full body massages (1 hour each) over 5 weeks I can walk again and I am not in any pain.
Also I Kept a hot water bottle up to the area that hurts around 3 times a day - heat helps get the blood to the area and heal it. What I have learnt is that the condition your muscles are in has a lot to do with it. Prior to hurting myself I had not had a decent massage in 2 years and I mostly do physical work - I had been neglecting my body. When I go back next they are going to try "cupping" on the muscles around my shoulder blades and shoulders. Since the operation this area of my back has had large knot like masses in them which crunch when they are massaged and cause me ongoing pain that I have learnt to live with. I will let you know how this goes next post.
Hope this helps.
Having said all this I know things like massage are only temporary fix - the pressure that is on my hips and lower tail bone area is not natural. The full length of my spine is fused and unable to bend or support the weight associated with bending. Only time will tell.
One of the problems I find is that when you look okay on the outside people assume you are fine - you don't have an arm or leg missing - it is hard to explain to them until you show them the x-rays what exactly is wrong with your spine - I am slowly learning as the years go by that it is up to me to say "no I can't do that". It has taken a long time for me to learn what I can and cannot do and as I get older I am experiencing more and more limitations.
I've been laid up since I first hurt myself 6 weeks ago with serious crunching on my left side - I could hardly walk. There was an excruciating throbbing in my spine all the time - around the tailbone area, when I sat, or slept I could not relieve the pain. It was horrific - I thought it would never stop.
But what I wanted to tell you all is that MASSAGE HAS REALLY HELPED! Not a physio - but chinese massage. They gently got stuck into the area that kept crunching when I walked (down my lower lumbar left right along the side of my spine). After 5 x full body massages (1 hour each) over 5 weeks I can walk again and I am not in any pain.
Also I Kept a hot water bottle up to the area that hurts around 3 times a day - heat helps get the blood to the area and heal it. What I have learnt is that the condition your muscles are in has a lot to do with it. Prior to hurting myself I had not had a decent massage in 2 years and I mostly do physical work - I had been neglecting my body. When I go back next they are going to try "cupping" on the muscles around my shoulder blades and shoulders. Since the operation this area of my back has had large knot like masses in them which crunch when they are massaged and cause me ongoing pain that I have learnt to live with. I will let you know how this goes next post.
Hope this helps.
Having said all this I know things like massage are only temporary fix - the pressure that is on my hips and lower tail bone area is not natural. The full length of my spine is fused and unable to bend or support the weight associated with bending. Only time will tell.
Well finally I don't feel alone
I am a 36 year old mother of two daughters aged 13 and 11. I had the Harrington Rods put in at 16, they half taken out at 17, then the rest at 18. My spine is also fused.
I am active and healthy although was recently involved in a minor MVA. Although my spine seems to have taken a beating. I can't stand this pain anymore and am so sick of getting fobbed off by the doctor. If I would have know the long term effects of this horrendous operation maybe mum and dad would have thought harder. But who was to know. Joanne x
I am a 36 year old mother of two daughters aged 13 and 11. I had the Harrington Rods put in at 16, they half taken out at 17, then the rest at 18. My spine is also fused.
I am active and healthy although was recently involved in a minor MVA. Although my spine seems to have taken a beating. I can't stand this pain anymore and am so sick of getting fobbed off by the doctor. If I would have know the long term effects of this horrendous operation maybe mum and dad would have thought harder. But who was to know. Joanne x
Sorry about your pains, it sounds to me like both your curves as gotten worse, was it checked, since the pains have intensified? I'm praying for both of you.
I guess being a man 64 years old and don't have to carry children has help me, I've had surgery for my scoliosis about 25 years ago and haven't had any problems, my curvature was very severe too, 120 degrees, now maybe 70 degrees, even with the 120 degree curve I never had any pain, my surgery was to prevent a possible paralysis at an older age, now I guess, lol. I have never had any revision surgery. I have the usual looks, because with such a severe curve as mine was, rotation of the spine happened, my curvature was thoracic, I have the bulging on the right side (from shoulder to bottom of rib cage) and crunching on the left, my rib cage on the crunching side is almost touching my pelvis too, it does touch if I lay a certain way on my left side and bend my knees in a fetal position. When I'm tired I get pain in my shoulders, I guess that is from my posture of sometimes trying to lessen the appearance of my abnormal back in public, try as I may to relax my posture, it happens involuntary, especially when somebody is behind me, who I sense is gazing at my back, the pain is very tolerable.
I'm trying to tell you both that there is hope of having scoliosis surgery and not having pain. My harrington rods, two of them is still in place, never been touched, one rod bulges a little at the top and if it touches anything the pain from that is intolerable. I've always been very active without any limitations. My two children, a daughter and a son both adults in their 30's has scolosis, my daughter had surgery about 15 years ago, she has one child and is expected to deliver on the 7 of this month (Oct), she had no pain carrying both, maybe it's because we all have thoracic curves, I don't know. My daughter still has her rods (3 or 4, can't remember) in place and no revision surgery. I don't know if your pains could be from a not so talented surgery or it is common with lumbar curvatures, that could be something to look into, not just to be inquisitive, but if it was, maybe there is somthing positive that can be done about the pains. I hope I've reasured you both that there is hope to relieve your pains and to live with scoliosis even to my age and not be limited. It helps me when I have pains, (normal pains, even people without scolosis get) maybe from tiredness or twisting a certain way suddenly, the following exercises helps to keep me nimble, and relieve soreness or small pains, it also relaxes
my tense posture.
Keep your feet together, slightly apart and swing your arms and torso as far around as you can to the left and right (may not be posible if your rib is touching your pelvis bone). Standing... put your hands behind your thighs, and bend as far backward as you can from the waist, hold it for a while. Stand with your right hand outstreched in the air over your right shoulder, left hand at your side, bend as far to the left as you can and hold it for a while, do the opposite and bend to the right side. Hang in there! I'll follow your postings because I'm here to find out if the crunching on my left side is affecting one of my lung and causing me to have shortness of breath ocassionally.
I guess being a man 64 years old and don't have to carry children has help me, I've had surgery for my scoliosis about 25 years ago and haven't had any problems, my curvature was very severe too, 120 degrees, now maybe 70 degrees, even with the 120 degree curve I never had any pain, my surgery was to prevent a possible paralysis at an older age, now I guess, lol. I have never had any revision surgery. I have the usual looks, because with such a severe curve as mine was, rotation of the spine happened, my curvature was thoracic, I have the bulging on the right side (from shoulder to bottom of rib cage) and crunching on the left, my rib cage on the crunching side is almost touching my pelvis too, it does touch if I lay a certain way on my left side and bend my knees in a fetal position. When I'm tired I get pain in my shoulders, I guess that is from my posture of sometimes trying to lessen the appearance of my abnormal back in public, try as I may to relax my posture, it happens involuntary, especially when somebody is behind me, who I sense is gazing at my back, the pain is very tolerable.
I'm trying to tell you both that there is hope of having scoliosis surgery and not having pain. My harrington rods, two of them is still in place, never been touched, one rod bulges a little at the top and if it touches anything the pain from that is intolerable. I've always been very active without any limitations. My two children, a daughter and a son both adults in their 30's has scolosis, my daughter had surgery about 15 years ago, she has one child and is expected to deliver on the 7 of this month (Oct), she had no pain carrying both, maybe it's because we all have thoracic curves, I don't know. My daughter still has her rods (3 or 4, can't remember) in place and no revision surgery. I don't know if your pains could be from a not so talented surgery or it is common with lumbar curvatures, that could be something to look into, not just to be inquisitive, but if it was, maybe there is somthing positive that can be done about the pains. I hope I've reasured you both that there is hope to relieve your pains and to live with scoliosis even to my age and not be limited. It helps me when I have pains, (normal pains, even people without scolosis get) maybe from tiredness or twisting a certain way suddenly, the following exercises helps to keep me nimble, and relieve soreness or small pains, it also relaxes
my tense posture.
Keep your feet together, slightly apart and swing your arms and torso as far around as you can to the left and right (may not be posible if your rib is touching your pelvis bone). Standing... put your hands behind your thighs, and bend as far backward as you can from the waist, hold it for a while. Stand with your right hand outstreched in the air over your right shoulder, left hand at your side, bend as far to the left as you can and hold it for a while, do the opposite and bend to the right side. Hang in there! I'll follow your postings because I'm here to find out if the crunching on my left side is affecting one of my lung and causing me to have shortness of breath ocassionally.
Hi ilazria!
I feel your pain. I too have had back surgery anterior/posterior spinal fusion with harrington rods put in in 95. My back seem to be ok, not great for a while until about 2000 when I got pregnant with my son, it hurt so bad the entire time and only got worse after my son was born. When he was two they decided the only thing that might help was to take out my harrington rods(I thought they could stay in for life) They explained that it might help and was kinda my only option at that point. So right before christmas of 2002 I had my rods removed in a painful surgery and long recovery. It felt a bit better for about the first year, and then it slowly got worse again.I had my daughter 3 years ago and the back pain has taken rapid decline in those short years. Now at almost 29 and just about 14 years after my first surgery, I am at a loss for what to do. It is at the point where my daily life is effected. Just trying to put dishes away or take laundry out of the washer could lay me up for days. I wonder if there are many other people who have had the same opperation, and is going threw similar complications. I wish you much luck on everything, and do understand how it feels on a daily basis to have back pain. Please let me know how everything turns out for you. You are in my prayers for some releif!
I feel your pain. I too have had back surgery anterior/posterior spinal fusion with harrington rods put in in 95. My back seem to be ok, not great for a while until about 2000 when I got pregnant with my son, it hurt so bad the entire time and only got worse after my son was born. When he was two they decided the only thing that might help was to take out my harrington rods(I thought they could stay in for life) They explained that it might help and was kinda my only option at that point. So right before christmas of 2002 I had my rods removed in a painful surgery and long recovery. It felt a bit better for about the first year, and then it slowly got worse again.I had my daughter 3 years ago and the back pain has taken rapid decline in those short years. Now at almost 29 and just about 14 years after my first surgery, I am at a loss for what to do. It is at the point where my daily life is effected. Just trying to put dishes away or take laundry out of the washer could lay me up for days. I wonder if there are many other people who have had the same opperation, and is going threw similar complications. I wish you much luck on everything, and do understand how it feels on a daily basis to have back pain. Please let me know how everything turns out for you. You are in my prayers for some releif!
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