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Hi everyone...I'm new, and I wasn't quite sure where to post this one. I hope I'm in the right area. I'm not due for surgery, but I did have some questions I was hoping SOMEONE would finally be able to answer. For the background:
I was diagnosed with scoliosis when I was 8. Apparently at the time I didn't need a brace, but a year later I did, so I was fitted for a Milwaukee brace as well as a pad on my lower right side and a strap on my upper left side (to try to control the curves). Did the usual, wore it for 23 hours a day for a year. It didn't maintain the curves, so when I was 11 I was set up for surgery. They didn't want to do the surgery because I hadn't hit my first stage of growth yet, but he (the Dr.) said that if they waited a couple years, I would be in serious trouble based on the fast progression. So they did the surgery and used Cotrel-Dubousset instrumentation: 2 stainless steel rods on the top curve and one on the bottom. The bottom rod had a 3 inch tail on it that they didn't see as a problem considering I was quite chubby. For a few years after surgery, everything was fine until I was about 15-16 and I was losing feeling in my extremeties and anytime I did anything that would shock my ribs (such as coughing or sneezing) an incredible burning pain would completely engulf my back (seriously felt like I was on fire). I went back to Shriners where they had me point to where exactly the most pain was, and it was at the bottom. They taped a dime to my back (where I had pointed) and did a series of x-rays and discovered that between the tail of the rod and the dime there wasn't any space. The rod was literally coming through my skin. They also discovered that the bottom hook was pulling away from my spine and had bent. So I had a second surgery to remove that 3 inch piece of metal. After that, all was well. Except for the numbness (I was told that would eventually go away). Moving forward....
Now I'm 25 and for the past few years things have been getting progressively worse. Still have the numbness in extremeties, especially in select fingers and toes. The biggest issues now are that if I reach my arm behind my head and touch between my shoulder blades (where most of the pain is) and push a little bit, there is a lot of "crunching". This extends from between my shoulder blades up to the top of the scar (and is itself quite painful). The second problem (which, to me, is the biggest) is I feel like there are several very powerful hands squeezing my spine, running exactly through the same area where my rods are. If I move even a tiny bit I can "feel" my rods attached to my spine. I haven't felt anything remotely like this since I sat up for the first time after my first surgery. I've also started experiencing my "hot back syndrome" mentioned earlier (this is more recent...probably the past several months). Another thing is my sternum (which should be solid) has been...popping or cracking...I suppose those terms should define it. I've noticed that, instead of being relatively flat like it used to be, there is now a faint ridge or bump running vertically. It's very faint, but it's definitely there, and it wasn't before all of this spine squeezing, body twisting thing started.
Now that all of that has been said, I've been to the doctor (as well as the ER for severe pain extending from between my shoulder blades to the center of my chest...thought I was having a heart attack) on several occassions....only one time have x-rays been done, and that was because of severe chest pain. I've been told over and over again that my spine is fine (been told by the ER doctors, which I will admit, in this area, are lacking in intelligence...I have to wonder how they even made it through medical school sometimes)...or rather, it LOOKS fine. I've mentioned the "crunching" and the burning and they had no idea what it was and decided to give me some pain medication instead of investigating further. I've talked with my regular physician about it...she too offered pain medication, muscle relaxers, etc... and suggested that it's probably stress related. I'm at a complete loss. I honestly don't know what to do at this point. I can't go back to Shriners because I'm too old
and the orthopaedic surgeon here won't see me because I've already had a spinal fusion (very small town). I'm becoming incredibly worried...not only because of the effect the pain has on me emotionally, but it's also affecting my career. Lets face it, you can't paint if your hands are numb (okay, some people can...). But really...I don't know where else to turn. I have no idea what to do. I've researched the internet and the library and every other resource I have available for information relevant to problems with C-D instrumentation, and nothing has come up. Except for this website So....I apologize for the novel, but if anyone has ANY idea what's going on or if this is normal (I was told I'll have pain for the rest of my life, but I'm quite sure this is far exceeding my original doctor's definition) I would truly, truly appreciate some advice. I quit taking the pain medication because I'm not a fan of medication period...pain is supposed to let you know when something isn't right, not be covered up so things can worsen.
So, just for those who don't want to read a novel
here's the list:
*squeezing/pressure running length of instrumentation
*feeling like my spine is twisting/rotating
*changes in sternum
*numbness
*breathlessness
*back on fire (sounds like the name of a band, but it isn't...as far as I know...would still make a good name though )
*crunchiness/popping
*one I forgot to mention: severe joint pain...if there's a joint, there's some pain (I've been told I have arthritis, mainly in my left hip because of one leg being 2 inches longer than the other...fun party trick...I suppose arth. goes along with the territory)
*Oooo, another one I forgot to mention...ribs slipping out of place and pushed back in via the husband, both in my back and in my front..this one I haven't been able to figure out yet.
Okay, I'm done. I think. I'm also absentminded so I'm quite sure I forgot something...as the Arnolds so eloquently put it, "I'll be back."
Thanks in advance!!!
-Etoile
I was diagnosed with scoliosis when I was 8. Apparently at the time I didn't need a brace, but a year later I did, so I was fitted for a Milwaukee brace as well as a pad on my lower right side and a strap on my upper left side (to try to control the curves). Did the usual, wore it for 23 hours a day for a year. It didn't maintain the curves, so when I was 11 I was set up for surgery. They didn't want to do the surgery because I hadn't hit my first stage of growth yet, but he (the Dr.) said that if they waited a couple years, I would be in serious trouble based on the fast progression. So they did the surgery and used Cotrel-Dubousset instrumentation: 2 stainless steel rods on the top curve and one on the bottom. The bottom rod had a 3 inch tail on it that they didn't see as a problem considering I was quite chubby. For a few years after surgery, everything was fine until I was about 15-16 and I was losing feeling in my extremeties and anytime I did anything that would shock my ribs (such as coughing or sneezing) an incredible burning pain would completely engulf my back (seriously felt like I was on fire). I went back to Shriners where they had me point to where exactly the most pain was, and it was at the bottom. They taped a dime to my back (where I had pointed) and did a series of x-rays and discovered that between the tail of the rod and the dime there wasn't any space. The rod was literally coming through my skin. They also discovered that the bottom hook was pulling away from my spine and had bent. So I had a second surgery to remove that 3 inch piece of metal. After that, all was well. Except for the numbness (I was told that would eventually go away). Moving forward....
Now I'm 25 and for the past few years things have been getting progressively worse. Still have the numbness in extremeties, especially in select fingers and toes. The biggest issues now are that if I reach my arm behind my head and touch between my shoulder blades (where most of the pain is) and push a little bit, there is a lot of "crunching". This extends from between my shoulder blades up to the top of the scar (and is itself quite painful). The second problem (which, to me, is the biggest) is I feel like there are several very powerful hands squeezing my spine, running exactly through the same area where my rods are. If I move even a tiny bit I can "feel" my rods attached to my spine. I haven't felt anything remotely like this since I sat up for the first time after my first surgery. I've also started experiencing my "hot back syndrome" mentioned earlier (this is more recent...probably the past several months). Another thing is my sternum (which should be solid) has been...popping or cracking...I suppose those terms should define it. I've noticed that, instead of being relatively flat like it used to be, there is now a faint ridge or bump running vertically. It's very faint, but it's definitely there, and it wasn't before all of this spine squeezing, body twisting thing started.
Now that all of that has been said, I've been to the doctor (as well as the ER for severe pain extending from between my shoulder blades to the center of my chest...thought I was having a heart attack) on several occassions....only one time have x-rays been done, and that was because of severe chest pain. I've been told over and over again that my spine is fine (been told by the ER doctors, which I will admit, in this area, are lacking in intelligence...I have to wonder how they even made it through medical school sometimes)...or rather, it LOOKS fine. I've mentioned the "crunching" and the burning and they had no idea what it was and decided to give me some pain medication instead of investigating further. I've talked with my regular physician about it...she too offered pain medication, muscle relaxers, etc... and suggested that it's probably stress related. I'm at a complete loss. I honestly don't know what to do at this point. I can't go back to Shriners because I'm too old
and the orthopaedic surgeon here won't see me because I've already had a spinal fusion (very small town). I'm becoming incredibly worried...not only because of the effect the pain has on me emotionally, but it's also affecting my career. Lets face it, you can't paint if your hands are numb (okay, some people can...). But really...I don't know where else to turn. I have no idea what to do. I've researched the internet and the library and every other resource I have available for information relevant to problems with C-D instrumentation, and nothing has come up. Except for this website So....I apologize for the novel, but if anyone has ANY idea what's going on or if this is normal (I was told I'll have pain for the rest of my life, but I'm quite sure this is far exceeding my original doctor's definition) I would truly, truly appreciate some advice. I quit taking the pain medication because I'm not a fan of medication period...pain is supposed to let you know when something isn't right, not be covered up so things can worsen.So, just for those who don't want to read a novel
here's the list:*squeezing/pressure running length of instrumentation
*feeling like my spine is twisting/rotating
*changes in sternum
*numbness
*breathlessness
*back on fire (sounds like the name of a band, but it isn't...as far as I know...would still make a good name though
)*crunchiness/popping
*one I forgot to mention: severe joint pain...if there's a joint, there's some pain (I've been told I have arthritis, mainly in my left hip because of one leg being 2 inches longer than the other...fun party trick...I suppose arth. goes along with the territory)
*Oooo, another one I forgot to mention...ribs slipping out of place and pushed back in via the husband, both in my back and in my front..this one I haven't been able to figure out yet.
Okay, I'm done. I think. I'm also absentminded so I'm quite sure I forgot something...as the Arnolds so eloquently put it, "I'll be back."
Thanks in advance!!!
-Etoile
My nerves are shot for the most part, trying to figure out what to do. I think, since I'm awake, I'll give Shriners a call and see what can be done as far as information being sent to me. I would really like to see what was never told to me. 
), and so it could be that you have some hardware that is loose or broken, and sometimes X rays don't see all that could be broken-only a good inspection while surgery could solve that problem. I had surgery to replace the rods and screws and add fusion this last December for that. I also had a bursitis type of pain years ago after I had my first surgery, it was located in my right/upper thoracic side(between shoulder blades), and again I had surgery to remove a hook b/c the pain was getting too much, and that surgery was pretty "easy", compared to the other ones.
Hey, you do what you gotta do when you have pain...
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