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Hello, my name is Amy. I am 37 years old. When I was 14 I was disgnosed with scoliosis and had corrective surgery. I received the harrington rods and cotrel duboset hinges (sp?) I have 3 curves in my spine, which left my spine looking like a questionmark, the largest curve being between my shoulder blades at 56 degrees. When the doctors opened up my back he found that there were two vertebrate in my neck which were fused together at birth.
I am writing because I am experiencing alot of pain. I have had quite a bit of pain throughout the years, but this pain is scaring me because it is getting worse and I don't ever get a complete break from the pain. I am trying to determine what the problem could be so that I can find appropriate treatment. I do have a doctor that I see quite frequently; however, he is not a specialist and I think he has gotten used to hearing me complain over the years and lately he doesn't seem to be hearing me. I am not prescribed any prescription pain medication ( my doctor would give it to me, but I chose not to take it as I don't wish to be going through my life in a zombie like state regardless of the pain, although lately the pain is getting alot worse and I may restort to this if I can't find the answers I need). I guess the best thing I can do is to list the things I notice happening and see if any of it makes any sense to anyone reading this. Thank you in advance for any input, suggestions or help that anyone may have. It is a very scary feeling to know that something is wrong, but not know what it is.
First let me say that I experience pain all of the time; however, the pain changes. It is never the same day to day. I experience sharp, shooting pains, burning pains, needles and pins pains, stinging pains in my legs and torso, a total body aching pain. The pains which cause me the most concern are the stinging pains and the burning pains. I usually experience this on the front of my legs, but lately I have felt this in my arms and even in my face on my cheeks. When this happens it literally feel as though my skin is on fire. Somedays my skin hurts so badly that it is too uncomfortable to wear clothing, because feeling the clothing rubbing on my skin hurts too much. I am also experiencing sharp pains in my joints. I do experience alot of pain in my lower back, below the hardware; however since the beginning of winter (I live in Vermont) I have been experiencing an ache along the rods in my spine.
Normally I live a pretty active life. Up until recently I was an active swimmer and walker. I own two dogs and maintained a pretty active lifestyle. However, since the 'new pains' began about 9 months ago I am unable to do the activities that I enjoy. I wish to get back to my normal routine and would really appreciate any help. Again, thanks in advance. Many healthy blessings to you.
~Amy

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Try to go to see a doctor and have new xrays taken. It is extremely helpful to take your old xrays. I was charged 800 by a man in the ER that literally told me at the age of 21 (8yrs post-op) "that I had no idea what real pain was". Anyhow, I obviously do! I have 2 curves, upper was at 87 and lower was at 82 at time of surgery. I have 2 bars and screws in my hips that attach springs to the rods in my spine.

My upper rod is moving away from my spine causing a sharp ache. The screw is screwing its way out of my left hip, a burning sensation. I can't work, I can't ride my bikes, some days I can't even move.

Removal or a lifetime of morphine patches and/or oxycotin are my choices.

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WOW. Your symptoms sound like mine. I am 10 yrs post op. I was 12 when diagnosed and had surgery. I was fine for the first 5 or so years and was very active. Went hiking, ran track in high school, could out-run a lot of girls, swam, lifted weights, etc. The doctor told me all of this was fine to do. Now a little over 10 years post op I am in so much pain I can hardly make it through a day. My pain is every day, all day! I feel like no one understands how much pain I am in. I am not one to complain so I don't say much about my pain, but the pains I do have bring tears to my eyes. I have sharp shooting pains around my hardware, throbbing pains, shooting pains down my legs, arms, and up my neck, I also have lower back pain. I am also having serious headaches. (Not sure if the headaches are related but it’s the same sharp shooting pains that I have all over my body) I also have noticed the hump in my shoulder is getting extremely large and worse as the years go on which makes me think my curve is getting worse or something is moved. Some people have told me I don’t know what real back pain is and since I never have pain and was so active after surgery…people don't believe me that I'm in so much pain. By the time I get myself ready in the morning my pain is so bad I’m ready to lie down because my back and shoulders are so sore. Have you found any answers?!?!

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I have been on this website reading all these responses to people having chronic pain YEARS after scoliosis surgery...and all I can say is that it's a little scary how similar the stories are. I had a 48 degree curve in the middle of my back (looked like a C ) and went and had the surgery a few months after finding out. I did the surgery because a friend of mine wore the brace and said it was horrible and you had to wear it 20 hours a day with little to no results...and there was a huge chance of the scoliosis progressing. So I figured my only shot was to do it and get it over with. I had 2 harrington rods placed in along with a few bolts and hooks to hold it into place. I had pain obviously after the surgery and I knew that would happen. It seemed like only from the time I was 12 to maybe 14 the pain was manageable. I'm now 23 and a mom of 2 1/2 year old twins. The pain is pretty much getting insane at this point. I've had x-rays and everything is in place except for a fractured vertabrae which I did when i slipped on a floor 4 years ago that adds to the already annoying pain. I wake up in the morning stiff as a board and almost have to roll out of the bed or couch so I don't bend my back immediately or i'll almost hit the floor from the pain. It's my whole back that feels like this. the pain even after waking up stretching it out a little before I get my kids up is not manageable or even close to it. I feel like as time has gone on the pain has gotten way past the point it should has. They did not tell me I would feel like this..they said it would be uncomfortable. I now am on vicodin or I am not able to do what I have to do with them and for myself. My original surgeon will no longer see me because he doesn't take my insurance and no other doctor will touch me. I am just being told to go to the next one..So now I see my primary who isn;t a spine specialist but he doesn't know how else to treat me besides giving me pain medicine. I'm constantly complaining to my fiance but I feel like my complaining doesnt even make people realize what I feel like everyday..thats why im on here ..it makes me feel like theres others out there who are going through what I am. There are days where i think how can it get any worse i can't believe what I feel like but I push through for my kids. If anyone who has had this done and has any solutions even simple exercises please comment. any help at this point would be greatly appreciated. Thanks.
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I read somewhere that the rods can actually "rust" inside of your body even though they are titanium. I had my surgery preformed at Duke Children's Hospital when I was 13. My doctor was one of the top rated pediatric sugeons in the southeast. So, he told me that your body after a while (10+ years) will try to "remove" the hardware itself. My top rod is dislocated from my spine and the left hip screw for the bottom is "unscrewing" and causing scartissue to lay heavy on a nerve. In many cases, this is what causes pain. So, your only choices are to either remove or go on pain meds for the rest of your life. Removal isn't as bad as placement, unless you have the surgery "redone". During plain removal, they make small incisions at the problem spots and remove hardware that is easily accessible. The recovery time is about a third of placement, about 4 weeks total, with maybe 4-5 days bedridden. After removal, it is possible to regain curves, therefore, it is best to wear a brace. The brace can usually just be worn at night to keep the back from recurving.

The worst part, scoliosis surgery patients usually lose about 15 years of life :( didn't find that out till about 2 years ago.

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wow i didn't know after 10 years that could happen. that is pretty horrifying. it makes sense though...seems like now (10 years +) im having more pain than ever. ive considered taking them out but have heard stories of people taking out the rods and then like you said the curve starts again and they ended up having it re-done. makes me sick that my doctor at the time said if i ever needed anything regardless of whatever he'd let me come back and see him...i mean he made about 50 grand on me..and now he won't even get on the phone because he no longer takes my insurance. selfish and cruel how doctors are...could care less about their patients being in pain ( at least my doctor) once they get paid. thanks for the input!
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Hi Amy,

So sorry to hear you are in so much pain.  I can certainly relate - I am now 34 and had spinal fusion T3 to L4 for scoliosis about 12 years ago.  My pain is constant, deep, exhausting, and affects how I live every day.  Although I still manage to hold down a full time job, some days I feel I am wearing a "happy-mask", pretending everything is hunky-dory while I feel like I am crumbling away.  I have trouble walking some days, other days I have trouble standing still.  Many days I can hardly concentrate to sit and watch a movie, let alone do a report etc for work.  On the worst days I lie in bed and cry and wonder if I should have ever had the surgery after all, it's almost a sense of guilt and it's overwhelming.  Over the years I have tried just about everything, from meds, acupuncture, physio, chiro, even had a woman chant over me once calling on spirit guides to help (seriously!). I know what its like when no-one seems to understand, but I do, so I offer you a few ideas below that have worked for me.

Firstly, ask your GP to refer you to the best spinal surgeon you can find in your city.  You need someone who is specialised to run x-rays and scans to make sure there is nothing actually wrong with your hardwear.  If at the end of it all, they say nothing is 'mechanically' wrong, don't think that is the end of it!  Your pain is REAL, and you need to delve further.  Next, you will need to find a good pain specialist.  I have seen both specialists who deal with the psychology of pain, as well as those who can offer long term relief with rhyzotomies (facet injections) etc.  A specialist psych may help teach you relaxation exercises to help you work through your pain.  Mine taught me a great technique that helped me pace myself so I didnt push myself to the point of agony (the idea is to stop well before you get that far).   A (non-psych) Pain Specialist may suggest a rhyzotomy to give you long term relief (mine normally lasts 4 or 5 months) without having to chew pain killers all day.  Finally, try to find a specialist physio.  Research on the net, checking the relevant professional body for your country.  Do'nt just go to your closest clinic, they may just give you exercises and techniques that work for 'normal' backs, and will most likely cause you additional pain.  Find someone who has dealt with spinal fusions and chronic pain. 

I hope this helps, best of luck to you.

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Hi Amy, Sorry I just posted a reply below but i think I linked to the wrong user... so just letting you know incase you didn't get a notification. x Helen
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You're definitely not alone. I've had pain since my surgery 15 years ago. In 1997 I had rods, hooks and pins implanted to correct a 65 degree S curve. I was 15 and am now 30. I was told by my awesome ortho doc that after 10-15, perhaps 20 years that my rods would have to be replaced with new ones because they're like a huge paper clip, they can only be bent so many times before they break. My curve was corrected to 3-5degrees, but the fusion from L3-L4 and L4-L5 have an 85% failure rate and mine failed completely from day 1. I "grew" 2.5 inches in height post surgery and had to learn to walk again. To this day I still cannot stand up "straight" and have been on pain meds for most of my life. 2 years post surgery I was involved in a bus accident and thrown across a public bus. I was given a new prescription for Ultram (I got to find out the hard way in the hospital that I am allergic to Vicodin and Darvocet) and took pills as needed, but have always pretty much had the pills available to me since then. About 5 years post surgery, the discs in my failed fusion started rubbing against each other too much and began to slip out of place causing my back to go out. Once it went out, which is random and unpredictible, I would have to take pills to loosen it up and work it back into place myself. About 4 years ago I was involved in yet another bus accident and have been dependent on my pain meds and muscle relaxers everyday to function. At this point they mostly only take the edge off and I am taking 3 50mg Ultram and 2 10mg Flexeril everyday. I used to take 3 500mg robaxin a day, but a doctor told me that it destroys muscles and switched me over. As a result of my back pulling itself out either to the right or left for so many years, it now also pulls my hips out. It sometimes can take days for me to be able to put my hip and back, back into place. Your situation (the original poster) sounds to me like your hardware has shifted either permanently or does it intermittently and is pushing/putting pressure on your sciatic nerve which would cause the numbness, tingly, stabbing, etc. Don't worry you're not alone my cyborg sister. *HUGZ*
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Hello


My name is Annette I am 44 years old, I was diagnosis with scoliosis when i was 11 years old I am also suffering with pain in my back all the time and i am also seeking for some help.
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hello annette did you have the scoliosis surgery or do you have scoliosis?
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pitty2bulls wrote:

omg i thought i was the only one..im 34 and had my surgery at 15 i also have the rods and im always in extreme pain and im sorry i dont have any answers for you... i cant get help my self just wanted you to know someone else feels ur pain...i recently got referred to a dr shaine hes supposed to be good wish me luck! if so i wish i could pass on the info  ***this post is edited by moderator *** ***
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hello amy,
if you still need help with regards to this then i may be able to offer some advice. I have scoliosis too but i haven't been fused. I have also had burning pain and pins and needles. Osteopathy helped me by stretching my muscles. I understand what its like to be in pain all of the time and i am sorry about that but you play the cards you have in life. Try to wear clothing that isnt tight and is loose on you. I don't know what its like to be fused but i can imagine. I am very sorry about your pain. I dont exercise and take it easy. I would advise you to do the same. Dont do things that will hurt you. Take care
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Hello everyone my names Kristina Heubrock. Alot of your stories sound like mine. I was 11 when I was diagnosted with scoliosis. I tried the brace first and didn't last long it caused me horrible pain and sores. I knew my next option was surgery cause my scoliosis was so bad I had to have something done. I had rods and screws put in my lower back. I don't know all the techinical terms lol. But it's my lower spine. I was fine at first but pretty fast about 2 years later I noticed my shoulder blades starting to change. I didn't have any pain. Now it's been 12 years and I have lots and lots of pain. My shoulder blades and my back are completly messed up. I can definatly tell that my back is curving again. I have three kids and I think it started after I had my first. I have had xrays done a few times and it shows nothing from what they can tell. But I get worried that something is really wrong and I don't want to go through all the pain of surgery again. I had my surgery done at shriners in Minnesota. Of course I called them just to ask a few questions and since I was over 18 they won't do anything about it. I have recently started exercising cause I was told along time ago that you need to have muscles in your back to support it and keep the pain away. Whether that's true or not I don't know but i'm trying it.%-)
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Hi my names kim. I'm 23 i had corrective spinal surgery when i was 17. I have 2 rods from the top to the bottom of my spine with 22 screws attached when i was 18 i had to have part of the metal work removed as it was protruding out of my skin. Its difficult people saying go to the doctors because they don't understand just how painful it is. I experience the pain just across my shoulder blades it feels as though something is tearing through my skin, when it happens it makes me gasp i literally feel like i'm going to throw up its agonising. I am gettin extremely frustrated with the pain and just wondered if anyone had any tips on quick pain relief until i can get to the doctors?
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