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Old 03-13-2012, 04:35 AM   #1
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I CAN NOT stand up straight! Anyone else like this?

In 1998 I had a herniated disk at T11 and T12. Had surgery to fuse with instrumentation. After 13 years with minimal problems I started to have pain again. An xray showed that one of the rods had broken. In 2010 the instrumentation was removed. I now suffer from a bulging disc in lumbar and burning in my neck. I CAN NOT stand up straight. I am bending over right above the fusion which is causing stress on ALL the muscles in my back. I went to a Physical Med and Rehab Dr. and he told me he could offer me more drugs, therapy, etc. Not much help. My Neurosurgeon says if he does surgery to put the rods back in for support, it will be bigger than my first surgery which was 8 hrs. on the table. I am 58 years old and this is affecting my quality of life. I am afraid that ten years from now I will be totaly bent over if something isn't done now. For the lst year I workout 6 days a week, walking 3 miles and strenghth training on my bowflex and yet 2 years after removal the muscles in my back still can not hold me up straight. The Dr. at rehab told me that after 13 years those muscles have atrifeed and are no longer working. Has anyone else experienced anything like this? I am so discouraged and stressed about what to do to "fix" this. It affects everything I do everyday. All they say is they wouldn't have surgery to fix it, go to therapy, and your tests (CT,MRI) show some peoblems but in general look good...I say then why do I feel so bad?? I don't care what the tests say I am in pain and bending over more and more as time goes on. Anyone out there experience anything like this?

 
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Old 03-13-2012, 09:10 AM   #2
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Re: I CAN NOT stand up straight! Anyone else like this?

Welcome to the board. I am sorry that you are having trouble with your fusion, and its aftermath.

Do you know that you have fused and that there is not a "pseudoarthrosis?"
Sometimes this will appear normal on imaging and the person is told he has fused, when in reality he may be only partially fused, with the remainder unstable.

Another possibility is that the adjacent level (one up from the fusion) is now giving you problems. This is quite likely, and may be responsible for the pain.

Have you consulted with an ortho spine surgeon? It is often helpful to have a new set of eyes looking at your problems. Ortho spine surgeons have similar training in the spine to a neurosurgeon, but sometimes take a slightly different approach to a problem and how to go about resolving it. Also, I have found that the first surgeon can get "stuck" in his original diagnosis and sometimes isn't able to look beyond the original issues to see what other problems you may be having.

I would recommend you get at least one more consultation with a spine surgeon who is in a completely different office or practice than your surgeon. Sometimes it is even helpful to go to a nearby city as I've found there seem to be trends that are particular to one area that most of the doctors adapt.

Are you indicating that your one level fusion took 8 hours? Did you have complications? I can see why you wouldn't want to put yourself through that...but there is no reason to assume a second surgery with another surgeon would take that long. My recent 3 level surgery and partial reconstruction was done in just under 3 hours. I'm older than you....but this surgery was actually "easier" than my first, one level fusion.

I don't really know what to say about the feeling that you cannot hold yourself upright. If the muscles are truly atrophied, perhaps you could wear a soft brace for lumbar support. Also, if after going to at least one other surgeon, preferably an ortho spine surgeon, and you are still told nothing can be done other than pain management, I would suggest that you look for some alternative medicine treatments. You might want to look into a method of movement called Feldenkrais -- technically The Feldenkrais Method of Somatic Education. You can find information about the theory of it online.

I encourage you to keep hunting for answers. Sometimes it takes a long time to locate someone who can help you with your issues. Good luck.

 
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Old 03-13-2012, 06:19 PM   #3
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Re: I CAN NOT stand up straight! Anyone else like this?

Ditto to everything teri says.
I also wonder whether you are having some muscles spasms which are affecting the ability of your remaining stabilizing muscles to function. Some other disc level may be having problems, causing the muscles to "freak out" and spasm. Is the area tight feeling, or does it feel like a lack of strength?

 
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Old 03-16-2012, 02:54 AM   #4
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Re: I CAN NOT stand up straight! Anyone else like this?

I have since gotten the report from my latest CT scans of thorasic and lumbar spine. It shows a bulging disc (to the left) at L3 and L4..and that T11 is shifted to the left and is pressing in to the spinal cord and the fusion at T11 and T12 is narrowed and shrinking, maybe even failed. Also arthritis at T8 and some other spots. The nerve in my left leg is aching all the time..can't even sleep on my left side for over 2 years now. At least now I don't feel like people (Dr.s too) think I'm crazy! All I ever hear is that the test "don't look that bad". That's what they said before my last major surgery too. The muscles that are working in my back are so overworked and stressed from trying to do all the work to hold me up, the pain from that is as intense as any other I've experienced. Muscle relaxers and some of the other drugs do not help..my pain also comes from what the scans showed, so now we go from here, again. I am being treated at a major university so we will see....one of the hardest things through all of this all the way back to 1996 is finding the Dr. that can help you. Thanks to you all!

 
Old 03-16-2012, 05:37 AM   #5
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Re: I CAN NOT stand up straight! Anyone else like this?

I'm sorry you have some new things wrong with your spine, but at least you now have some "proof" of why you are in pain. Despite what I always say about MRI being just one piece of the puzzle, doctors do seem to give a lot of weight to it. If "the problem" isn't evident on MRI or CT scan, a person will have a hard time convincing the doctor that he/she has a mechanical problem.

I went through that, except mine wasn't visible on MRI and it took me almost two years to put together enough information to convince my surgeon that there was an issue he could address!

Does the pain in your leg run down the front of the thigh or down the back, or does it just hurt all over? Do you have numbness?

When are you having a CT scan of the thoracic spine?

 
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Old 03-16-2012, 06:11 AM   #6
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Re: I CAN NOT stand up straight! Anyone else like this?

Yes it goes all the way to my toes and they go numb from time to time. My left foot is always cold when the right one is warm. The pain starsts in my back and goes through buttocks, left side, and down my leg on the outside of my leg, to my toes. Whole leg hurts, aches, like a tooth ache, dull pain all the time...gets worse at times. I just had a CT of both lumbar and thorasic the same day last month. These are all the same symtoms I had way back in the beginning of my 14 year journey on this road...when I had a herniated disk at T11-T12. Even then it took me almost 2 years in 1996 to find someone that could help me, with my first surgery in 1998. It will be 2 years in a couple days since my surgery in 2010 that removed the instrumentation and all my problems and more started again. It is very hard to be optimistic about resolution to my problems after all of this. Thank you!

 
Old 03-16-2012, 07:02 AM   #7
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Re: I CAN NOT stand up straight! Anyone else like this?

Unless you are convinced that there is no surgery that might help, I would suggest finding an orthopedic spine surgeon who lists spinal reconstruction as an area of interest, make an appointment, take all your imaging studies with you, and go in for a consultation. If your spine had not fused at that segment when hardware was removed, or if there was pseudoarthrosis, it may be that you have some instability that may not show on MRI that is causing nerve irritation or compression.

You may have to hunt around to find someone who can help you. Many spine surgeons (both neuros and orthos) will not take this on, so don't be discouraged when someone says "nothing can be done." That may turn out to be the case, but until you have made the rounds, you won't really know that.

 
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Old 03-16-2012, 07:38 PM   #8
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Re: I CAN NOT stand up straight! Anyone else like this?

An acquaintance who had everything from shoulder blades to S1 fused (major scoliosis fusion in high school, lumbar fused due to failing discs from increased pressure) was told that if she had any further problems, to go directly to Stanford. This might not be a first option for you, but if you are unable to find anyone in your area to help, the docs at Stanford have been known to revise failed surgeries with much success.

I'm sorry you are having problems, but I concur that having the empirical evidence of a problem can provide a sense of vindication.

 
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