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Thread: Hello , looking for some advice

  1. #1
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    Hello , looking for some advice

    Hi Everyone ! I am a T5 complete (2011) My question is should I have a Dr. who specializes in SCI ? I only deal with my GP and feel like I have missed out on a lot... It's been 5 years and I just realized I should have been doing standing therapy , I have not been upright since leaving Rehab. I guess I am most at fault for not doing more research but i'm doing it now !
    Should I try to get a stander for my home ? and will insurance cover it ? Should I have a specialty Dr. for my SCI ?

    Thanks for any replies !

    Jimmy

  2. #2
    It is recommended that you have an annual check-up, if possible, with a physiatrist or other physician who also have a board certification in Spinal Cord Medicine.

    After 5 years of not standing, you need to have a DEXA scan done of your proximal tibia and distal femur, as you as your hip, to be sure you have the bone density to start standing, before you stand.

    (KLD)

  3. #3
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    OK thanks for the response. My hips seem to be locked in the seated position?? When I lay on my stomach my butt stuck raised up

  4. #4
    So you have developed hip flexion contractures? Have you had Xrays to confirm you don't also have something like HO.

    Not doing daily ROM? You would need to correct this before attempting to stand. You need to see a good PT to show you some exercises and stretching, and plan on proning at least an hour daily to get in some additional stretch.So you have developed hip flexion contractures? Not doing daily ROM? You would need to correct this before attempting to stand. You need to see a good PT to show you some exercises and stretching, and plan on proning (Laying on your stomach) at least an hour daily to get in some additional stretch.

    (KLD)

  5. #5
    "jimmyg" is only 5 years into his spinal cord injury and is just beginning to research a care regimen. He probably has little idea what "HO" is and may not know the acronyms "ROM" or "DEXA," but it might be assumed he knows what "PT" means.

    HO (or sometimes NHO)=Neurogenic Heterotopic Ossification
    Neurogenic heterotopic ossification (NHO) is a frequent complication in spinal cord injury (SCI). It is characterized by the formation of new extra osseous (ectopic) bone in soft tissue surrounding peripheral joints in patients with neurologic disorders. In SCI patients, the incidence ranges from 10-53%.
    See: http://www.nature.com/sc/journal/v40.../3101309a.html

    ROM=Range of Motion

    DEXA Scan= Bone density scanning, also called dual-energy x-ray absorptiometry (DXA) or bone densitometry, is an enhanced form of x-ray technology that is used to measure bone loss. DXA is today's established standard for measuring bone mineral density (BMD).
    See: http://www.webmd.com/osteoporosis/guide/dexa-scan

    Just in case...PT=Physical Therapist

    Acronyms just don't have a place on a site whose purpose is to share information. Personally, I don't think acronyms have a place anywhere, but especially here.

    All the best,
    GJ

  6. #6
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    Where are you located? Finding board certified spinal cord medicine docs can border on impossible. Cincinnati only has one and he only takes new patients through the VA. Fortunately he had several understudies who aren't board certified but they're well-trained and have access to him from time to time.

  7. #7
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    Thanks GJNL ! I didn't know the acronyms but started to google them and write down all info... And yes I have " HO" in my hip but the Ortho said it was not a big deal, the only problem with that is he didn't ask me anything thing about "ROM' or "DEXA" or any questions... I think I really need to get in contact with a Physiatrist and start working on my lower body ASAP. I thought I could just handle everything on my own , I have had a lot more issues with pain the last year . Thank you very much for the responses! I will be here a lot more , I realize now I can't do it all on my own !

  8. #8
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    Quote Originally Posted by Mize View Post
    Where are you located? Finding board certified spinal cord medicine docs can border on impossible. Cincinnati only has one and he only takes new patients through the VA. Fortunately he had several understudies who aren't board certified but they're well-trained and have access to him from time to time.
    I'm in Central MA

  9. #9
    Quote Originally Posted by gjnl View Post
    Acronyms just don't have a place on a site whose purpose is to share information. Personally, I don't think acronyms have a place anywhere, but especially here.
    I assumed that he had been through rehabilitation when first injured 5 years ago, and would have learned much of that there. We certainly teach all of our patients these acronyms and concepts and information.

    (KLD)

  10. #10
    Quote Originally Posted by SCI-Nurse View Post
    I assumed that he had been through rehabilitation when first injured 5 years ago, and would have learned much of that there. We certainly teach all of our patients these acronyms and concepts and information.

    (KLD)
    Clearly not everyone who sustains a spinal cord injury is fortunate enough to get rehabilitation at the Veterans Hospitals with strong spinal cord injury services or at one of the several spinal cord injury accredited centers in the the US. For years, insurance companies have cut reimbursement for inpatient spinal cord injury rehabilitation. I know people who could only get 4-6 weeks from date of injury to release from rehabilitation. Thirty five years ago, my private insurance paid for five months of rehabilitation for a C 6/7 complete injury. I am certain that would not be the case today.

    Some people just aren't ready to take in all the information pushed at them in rehabilitation. They need time to process the injury and the changes taking place in their lives. It takes some people longer to become proactive about their care. And then, there are members of the Cure Care Community who reside in countries outside of the the United States whose second or third language is English and who may have not had the benefit of any kind of rehabilitation that we recognize here in the United States.

    It really doesn't take all that much time to type out the meaning of an acronym to help many who have not had the benefit of exposure that you expect.

    "jimmyg," I commend you for working toward getting more knowledgeable about your injury and care. Good luck! Hope you come here often and we can offer help.

    All the best,
    GJ
    Last edited by gjnl; 07-05-2016 at 11:50 PM.

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