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Thread: frustrated and feeling hopeless about seating

  1. #1
    Senior Member TerokNor's Avatar
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    Unhappy frustrated and feeling hopeless about seating

    I'm a C7 incomplete quad sitting in a Tilite Aero Z with power-assist wheels and a Roho Quadtro cushion.

    I've always had issues with my current seating arrangement, and no one seems to know how to fix my issues. I have pretty significant lordosis and as a result arch over backrests that are too low. Also, I sit with the backrest clam-shelled towards my body because otherwise I feel like I'm "lounging" in my chair. For a while the only way for me to sit comfortably was to sit with an anterior pelvic tilt with my back incredibly arched. This was putting a lot of pressure on my lower back though, so therapists at Kennedy Krieger adjusted it so I was sitting more posteriorly, which was more comfortable. Then I started noticing red circles on my ITs that went away after several hours, but appeared after very short periods of sitting.

    Today I went for a pretty awful seating eval. They tried every cushion ever, although none were my size. Each time my ITs lit up bright red. Then, somehow we realized that when I sat with the anterior tilt, the redness went away. This was after hours of cushion trying, adjusting dump, etc, so they rushed me out and sent me home. I now realize that my butt is sliding off the back of seat, between the cushion and backrest, with my ITs chillin very close to the edge of the back of the cushion.

    Is this okay? Does anyone have any insights about why this might be happening? This was at a prestigious NYC hospital seating clinic, yet they sent me home like this. They didn't even know how to inflate my Quadtro properly with the valve "unlocked" versus "locked."

    Any suggestions would be GREATLY appreciated. I will try to take a picture sometime. This isn't the first time I've been disappointed with a seating clinic. Have others had good luck clinics?

    THANKS
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

  2. #2
    Senior Member lynnifer's Avatar
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    Sorry about the TM diagnosis - me too back in 1985.

    What about a strap across the knees (be careful with redness and tautness of the strap though). Are your legs sliding you down? A strap might help?

    Otherwise I leave this to the professionals on this site (nurses, SCI-OT, etc)
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    Senior Member TerokNor's Avatar
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    Lynnifer: Transverse stupiditis sucks! But what are we going to do? In terms of the strap...I'm not sliding downwards off the seat. My butt is shoved all way back and my butt is slipping between the back rest and seat cushion off the back, so I'm super anteriorly tilted and my back is arched.

    Smash: I'm starting to lose trust in any seating expert. I've tried to become as educated as possible about chairs, but since I can't adjust my own chair, there's only so much I can do myself. I just wish I could be confident about the seating knowledge/experience of the person I'm dealing with.

    Anyone in NYC have a seating clinic they have had good experiences with?
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

  4. #4
    Where did you go for this eval? Was it Mt. Sinai?

    Have you explored a custom made seating system such as the Ride or Aspen?

    http://www.ridedesigns.com

    (KLD)

  5. #5
    What is the cause of your lordosis? If it's tight hip flexors can you work on stretching them out over time? I don't think sitting in that extreme lordosis is good on your spinal alignment/ribcage over the long haul. I sat like that for years. You need to scoot your butt out just a bit and perhaps add extra inserts for support in not only your lower back, but above too. If you just add inserts at the bottom of the back you will be exaggerating the lordosis even more. Oh, raise your backrest too if you're arching over it.

    Roho is suppose to be one of the best, but I had better mapping on the Jay2 deep which is gel. Does your therapist know you can order different well sizes for that cushion not just the typical width and depth measurements? You may need a smaller well size so that you aren't just sinking entirely into the gel. Your hips and area around the ITs should be sitting a little higher on the perimeter of the well and your ITs will then sit in the gel better not bottoming out...it makes almost a bowl type shape but very subtle. They could even rig up a cushion to try pressure mapping. Just take the gel top off the Jay so you're working w/ the foam base... and add foam around the inside perimeter of the well. Then put the gel back on top and cushion cover.

    I'm sorry if this makes no sense. I could take a picture if it would help.
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

  6. #6
    Senior Member TerokNor's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Where did you go for this eval? Was it Mt. Sinai?

    Have you explored a custom made seating system such as the Ride or Aspen?

    http://www.ridedesigns.com

    (KLD)

    I went to Columbia. They talked about the ride briefly. I'm not sure I need to go that route yet. It seems as though my issues are still position related, not cushion related. The PT also scared me in saying that it could take months to get. With the ride, does the cushion change when you get new chairs, or can it be transferred from one to another?
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

  7. #7
    Senior Member TerokNor's Avatar
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    Quote Originally Posted by november View Post
    What is the cause of your lordosis? If it's tight hip flexors can you work on stretching them out over time? I don't think sitting in that extreme lordosis is good on your spinal alignment/ribcage over the long haul. I sat like that for years. You need to scoot your butt out just a bit and perhaps add extra inserts for support in not only your lower back, but above too. If you just add inserts at the bottom of the back you will be exaggerating the lordosis even more. Oh, raise your backrest too if you're arching over it.

    Roho is suppose to be one of the best, but I had better mapping on the Jay2 deep which is gel. Does your therapist know you can order different well sizes for that cushion not just the typical width and depth measurements? You may need a smaller well size so that you aren't just sinking entirely into the gel. Your hips and area around the ITs should be sitting a little higher on the perimeter of the well and your ITs will then sit in the gel better not bottoming out...it makes almost a bowl type shape but very subtle. They could even rig up a cushion to try pressure mapping. Just take the gel top off the Jay so you're working w/ the foam base... and add foam around the inside perimeter of the well. Then put the gel back on top and cushion cover.

    I'm sorry if this makes no sense. I could take a picture if it would help.

    My lordosis is because my back is hyper-flexible. I was a gymnast for years and have an extremely flexible body as a result. I've always had lordosis, it's just worse now because of my trunk control issues. I have an abdominal binder that helps, but I can't take it off/on myself.

    I'm having a hard time following you, but I'm very interested. Would you mind taking a picture please?
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

  8. #8
    The Aspen (Ride) system is custom made, and includes both the wheelchair seat and back. If their therapists are not trained in doing the work themselves, then they have to have the company (in Colorado) do the fitting and build the system. Our therapists were trained by the company so we make our own. I would lean toward a seating program that has a similar level of expertise. Check with Mt. Sinai.

    The system can be moved to a different chair as long as the width and seat depth is the same as the previous chair.

    (KLD)

  9. #9
    Senior Member TerokNor's Avatar
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    The more I read about the ride, the better it seems. I've had constant issues with my backrest as well. Have you generally had good experience with them?
    Last edited by GGabrielle; 08-08-2012 at 11:52 AM.
    C7 ASIA C from Transverse Myelitis. Diagnosed on 12/19/09.

  10. #10
    I can get a pic. Give me a few days.
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

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