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Thread: Help for Knee Hyperextension

  1. #1

    Help for Knee Hyperextension

    Hello to all. I live in a part of Colorado where there is virtually no help for people with neurological and spinal cord issues. We have no neurologist and only one orthotist, who mostly builds orthoses for people with sports injuries. I have severe footdrop and spasticity on the left side and have been able to ambulate for a couple of years with the AFO the orthotist built, but my knee is now so hyperextended that I can't walk without pain and the orthotist basically told me there's nothing more he can offer me.

    Searching this site, I have found several threads about knee hyperextension and KAFOs versus AFOs, and I see clearly that something needs to be done to slow further atrophy and loss of function of my left lower extremity - but I have no idea how to go about finding competent medical and technical help.

    I will need to travel for this and am willing to do so, but finances are tight (as they are for everyone) and I can't afford to pay for any more bad medical advice. If I have to have a KAFO or some other type of device, I won't be able to make many back-and-forth visits out of town; but clearly nothing can be done where I live.

    Options closest to home would be Denver or Grand Junction in Colorado, Albuquerque in New Mexico, or Scottsdale/Phoenix in Arizona. Does anyone know of a rehabilitation center in any of those places that is up-to-date on orthotic help for people with nerve injuries? I was thinking of contacting Mayo in Scottsdale or the Craig Rehabilitation Center in Denver, but I don't know anyone who's been to either of them and my primary care doctor has no clue.

    Thank you in advance for suggestions, and please forgive my frustrated tone - I'm trying to keep this brief and not whine too much about the medical wilderness!

  2. #2
    Moderators, I am sorry, maybe I should have posted this in the Exercise and Recovery subforum - please feel free to move it if you think that would be preferable. I posted my question here because it is MS-related, but it also has to do with rehabilitation - wasn't exactly sure where it should go. Thank you.

  3. #3
    Quote Originally Posted by Bonnette View Post
    Hello to all. I live in a part of Colorado where there is virtually no help for people with neurological and spinal cord issues. We have no neurologist and only one orthotist, who mostly builds orthoses for people with sports injuries. I have severe footdrop and spasticity on the left side and have been able to ambulate for a couple of years with the AFO the orthotist built, but my knee is now so hyperextended that I can't walk without pain and the orthotist basically told me there's nothing more he can offer me.

    Searching this site, I have found several threads about knee hyper extension and KAFOs versus AFOs, and I see clearly that something needs to be done to slow further atrophy and loss of function of my left lower extremity - but I have no idea how to go about finding competent medical and technical help.


    I will need to travel for this and am willing to do so, but finances are tight (as they are for everyone) and I can't afford to pay for any more bad medical advice. If I have to have a KAFO or some other type of device, I won't be able to make many back-and-forth visits out of town; but clearly nothing can be done where I live.

    Options closest to home would be Denver or Grand Junction in Colorado, Albuquerque in New Mexico, or Scottsdale/Phoenix in Arizona. Does anyone know of a rehabilitation center in any of those places that is up-to-date on orthotic help for people with nerve injuries? I was thinking of contacting Mayo in Scottsdale or the Craig Rehabilitation Center in Denver, but I don't know anyone who's been to either of them and my primary care doctor has no clue.

    Thank you in advance for suggestions, and please forgive my frustrated tone - I'm trying to keep this brief and not whine too much about the medical wilderness!
    I also suffer from severe foot drop. My injury level is T-7-8 incomplete.

    I, like you, used a AFO to swing my foot through for clearance until I was introduced to the Bioness L-300. It is a electronic orthosis that is placed below your knee; equipped with a electronic heel switch (lifts your foot for clearance and lowers it for placement. It serves the same purpose as an AFO; but is 100% better.

    My device was programed to reduce the amount to hyper extension I was experiencing

    Please visit the Bioness web site. Warning: The device cost approximately $6,000.00 and is not covered by most insurances; but until recently is a cost recoverable by Medicaid or Medicare. www.bioness.com

    Customer service can direct you to a rehabilitation center in your area that will assit you hands on.

  4. #4
    Hi Kelrod, and thank you for your reply. It is wonderful that your Bioness L-300 works so well for you! I was evaluated for both the Bioness and the WalkAid a couple of years ago, and was found not to be among the population helped by those devices - the lowest level signal caused continuing stinging pain, without improving my gait.

    So...I'm pretty worried right now, because my left knee is in almost 30 degrees of hyperextension and every step hurts. I know that continuing to walk on a hyperextended knee risks permanent damage, and until I figure out where to go for specialized help, I'm wearing my AFO and using forearm crutches. I need to be assessed by a really experienced orthotist or physiatrist with neurological training, but am not sure where to find that help and can't afford to do much in the way of trial and error.

    Again, thank you for replying and I wish you continuing good results with the Bioness!

  5. #5
    Quote Originally Posted by Bonnette View Post
    Hi Kelrod, and thank you for your reply. It is wonderful that your Bioness L-300 works so well for you! I was evaluated for both the Bioness and the WalkAid a couple of years ago, and was found not to be among the population helped by those devices - the lowest level signal caused continuing stinging pain, without improving my gait.

    So...I'm pretty worried right now, because my left knee is in almost 30 degrees of hyperextension and every step hurts. I know that continuing to walk on a hyperextended knee risks permanent damage, and until I figure out where to go for specialized help, I'm wearing my AFO and using forearm crutches. I need to be assessed by a really experienced orthotist or physiatrist with neurological training, but am not sure where to find that help and can't afford to do much in the way of trial and error.


    Again, thank you for replying and I wish you continuing good results with the Bioness!
    Bonnette, I have attached a link to a company (Eureka) that is developing injectable chips/implants that will assist with foot drop. I don't think it is available in the U.S, but you may want to research it.

    It is my understanding the military is experimenting with this process; which is usually an indication that it's just a matter of time that it will be available here.

    This process is supposed to greatly reduce/eliminate pain associated with skin surface ESTIM. i.e. bioness-walk aide

    http://www.eurekanetwork.org/project/-/id/2526

  6. #6
    Thank you, Kelrod! I appreciate that link and will definitely do some research along those lines. And I agree with you - if the military is looking into implantable chips, they will eventually be available to a wide range of people.

  7. #7
    Bonnette- I think you will need a knee brace that will prevent you from hyperextending your knee but still allow you to wear your afo. I would contact Craig Hospital through Chris Chappell, a CC member, and find out the best orthotist in the Denver area that works with SCI patients. You need something mechanical to prevent your knee hyperextending- whether that is a knee brace along with your afo ( cheaper) or a KAFO ( more expensive).

  8. #8
    Thank you so much, Arndog! I saw my orthotist today and he said that the reason he'd told me he couldn't do anything more for me was not that he didn't know how to, but that he needs better information about my functional status than the local docs and PTs have been able to give him. I asked him about Craig and he encouraged me to contact them because I need input from orthotists and PTs who actually work with neurological issues day in and day out. Your post confirms this, and thank you again! I will contact Chris Chappell.

  9. #9
    Quote Originally Posted by arndog View Post
    Bonnette- I think you will need a knee brace that will prevent you from hyperextending your knee but still allow you to wear your afo. I would contact Craig Hospital through Chris Chappell, a CC member, and find out the best orthotist in the Denver area that works with SCI patients. You need something mechanical to prevent your knee hyperextending- whether that is a knee brace along with your afo ( cheaper) or a KAFO ( more expensive).
    I should kick my self in the butt for not mentioning Arndogs comments in my previous post. He is absoulty correct.

    When I wore a AFO it was modified to reduce/eliminate hyper-extension and was very effective.

  10. #10
    No self-kicking allowed! It's impossible to remember everything about one's own history - as stage follows stage, the sequence of events becomes too layered to call up all at once. I am very encouraged to learn that prior to getting the Bioness, your modified AFO situation worked well for you. I feel very hopeful about getting help in Denver, and then being able to follow through with the local orthotist. And I'm so grateful for all the good tips and good will on this forum!

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