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Thread: Deformed Lumbar Spine

  1. #1
    Member derek's Avatar
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    Post Deformed Lumbar Spine

    I have been wheelchair bound for 7 years after getting an SCI T6. Over the years my lower (lumbar) spine has become deformed. It is bent like I am in the sitting position even if I try to lie flat on the bed face up or face down. My spine just will no longer flatten out so I can lie down comfortably unless I am on my side. If I try to lie on my stomach, my tailbone bends upward drastically. Does anyone have this situation? A scan a year ago shows no vertebra fusion but I seriously doubt any type of exercise will correct it. One thing that might be a factor is that I have a connective tissue disorder similar to Marfan. I do have scoliosis in other areas of my spine.

  2. #2
    Are your doctors sure it's not due to hip flexion contractures ? One of the joint problems associated with Marfan's syndrome is Protrusio acetabuli. The hip socket is too deep and the head of the hip doesn't fit in the socket properly. This could lead to joint contractures limiting your ability to lie flat or prone. Diagnosis is usually made by hip/pelvis X-ray.

  3. #3
    Senior Member ~Lin's Avatar
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    If you'd like to discuss connective tissue disorders I'm available. I have one similar to marfans called ehlers danlos. I also run a ctd support group.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  4. #4
    Member derek's Avatar
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    Hi. I am not 100% sure what is causing my spine to be so bent. It is like it is in a permanent sitting position. With it like that, lying face down on my bed is very uncomfortable and standing in a standing machine is near impossible. I have had CT Scans made of my entire spine (no MRI since my aorta is fully lined with stents from dissections). The only thing they mentioned is that the bones are not fused together. I think at one time, my rehab doctor said it could be the muscles on the front sides of my pelvis are very tight and shortened. I wish somebody would give me a definite reason. I go see a new, and highly regarded, rehab doctor on Feb. 5. Hopefully she will help diagnose me.

    I can try and take some pictures of what I have and see what you all think. Let me know.

    I would really like to talk with others about this connective tissue disorder stuff. I was told I do not have Marfan but something similar. I have had dissections on my ascending and desceding aorta and also a mechanical aortic valve. Had my first dissection at 34 years old.

    Thank you for your responses!!

  5. #5
    You could have kyphosis (spine curvature) or pelvic tilt. Its important for someone to look at your whole picture. It is true that someone may not be able to correct it but Seating in your wheelchair is important and can help it over time.An Aspen seating system could help adjust at but if your seating helps fix it, it will cause pain in shifting your pelvis to straighten you out. Things to think about.

    pbr

  6. #6
    Senior Member ~Lin's Avatar
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    You should be tested for the vascular type of ehlers danlos syndrome in my opinion. Vascular type can be diagnosed by a genetic blood test. Do you have any skin symptoms? Such as issues with scars, easy tearing, bruising, history of stitches tearing through, etc? With the dissections if they don't believe it's marfans then testing for VEDS should be done. Really it should be done as part of the differential from what you've said. I think we may have spoken shortly on this forum about ctds before? Feel free to pm me. And I know some Facebook groups you may be interested in joining to talk with others who have diagnosed or suspected connective tissue disorders.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  7. #7
    Member derek's Avatar
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    @~Lin, where can i find this CTD support group? yes, i would like to know any support forums too. thanks!
    @SCI-Nurse, pelvic tilt sounds like a possibility. i wish my feb. 5 appointment with my new rehab sci doctor was sooner. i use roho quad seats. i also have a ride designs seat that was molded for me but it is difficult to transfer in and out of so i do not use it.

    regarding skin problems. no. only eczema and dry skin. i had been seen by a genetics doctor maybe 6 years ago. just know that i had some characteristics of marfan but not others. no blood tests were done.

  8. #8
    the ride designs seat is molded to your pelvis/seating and may straighten you out better. it would be good if you could problem solve with your caregivers and PT and how to best transfer in and out of the wheelchair.

    pbr

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