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Thread: Cauda Equina, w/c, help

  1. #1

    Cauda Equina, w/c, help

    Time flies, or actually not. Going on 6 years now. I've become more and more of a recluse as I cannot walk much. It is really more pain than anything but it has reached a point where if there is no close space I won't leave the car, don't go anywhere that requires more than 100 feet of walking. Also can't stand for more than a bit.

    Tremendous internal conflict as I am physically ambulatory, and still a warrior at heart. No right foot sensation and foot drop (mild). Fall down a couple times a week now.

    Started something on this a couple weeks ago, then dad went into hospital and died, service last night.

    I had lost motor control prior to my surgery and when I gained it back I thought I was home free and got a free pass. Instead the pain remains 9-10 and i get spasm and spastic episodes daily round the clock, not continuous. Got B&B but Mr happy is essentially non functional no "wood" with the constant pain.

    I want / need to get out. Past 2-3 years surgeries and complications kept me down and I can't take it.

    I'd feel foolish though, wheeling along with my camera and getting out of the chair for a minute or 2 to take a photo. But now I don't even go.

    I feel foolish knowing how desperately so many here would give for a few steps.

    How many Cauda Equina use wheels?

    If you were walking (HC I'm thinking of you) how do you mentally adjust?

    Why do I feel like I'm giving up?

    How do you get wheels? My pain doc is the only one I see regularly, ortho and neuro while friends, have said I'm deteriorating salvage with no options. My pain doc is a physiatrist can he get me wheels?

    Life is a gift that is passing me by.

    Very sad today, a bit depressed but not terribly, more sad. I'd like a rest from this. Even just an hour.
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  2. #2
    btw 6'1" 249lbs nakey. How accurate are the load ratings? would like a lightweight but they seem to be 250lb max other folders at 40lbs get heavy for my current health
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  3. #3
    Senior Member medic1's Avatar
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    Your physiatrist can and should get you a chair.

    I struggled a long time with walking, 3 years, before I got my chair. I looked at it like giving up, not trying hard enough. But I tell u its not either of those.

    One, the amount of pain that I was dealing with left me in the same situation as you. Not wanting to get out or go anywhere, staying in the car because it is too much walking or standing.

    Two, it isnt giving up. It is actually going to make u happier and healthier. You wont be overstressing your hips, legs, feet, and back from overcompensating for the other muscles and such that are constantly making up for others that have lost function. You will be able to go more places for longer periods of time because you wont be in pain from being on your feet. I too feel odd about being out in my chair and then standing up if I need to.

    It is something that you will have to deal with but it is worth it to start living your life and going out.

    I also make a conscious effort to always try and walk and do what I can before I use my chair. This way it keeps my legs as strong as possible without over doing it. The chair is one more tool that will allow us to stay as strong and healthy as possible without the constant stress and pain.
    Hope this helps.

  4. #4
    Bollefen - I am a cauda equina injury and use a wheelchair at home. If I didn't, I would be too tired to crutch walk elsewhere. My wheelchair at this point doesn't leave the house. There was a time that I was in so much pain with walking that I did put the chair in the car to go places. People don't understand when they see you stand up to take a photograph and then sit back in your w/c. You won't get them to understand. They figure, if you can walk with a cane, why would you need a w/c? So I agree with above medic1 - go get a chair and join the big party ! ! Don't look at it as symbolic of anything. It isn't a symbol of failure, it is a way to get through the day.
    Last edited by arndog; 03-05-2010 at 06:06 PM.

  5. #5
    I agree with Medic1 and Arndog!

    As far as 250lbs max weight capacity also consider if you will be hanging a backpack off the backrest/wheelchair frame loaded with camera equipment and stuff that will add additional weight. They offer heavy duty frame packages that bring the max weight up to 350 lbs. The Tilite TX and 2GX Folders start at ~12-13 lbs with fixed front legs and quick release rear wheels that make them much easier to manage for you and/or your wife.
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

  6. #6
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    C/A part time wheeler here. Bodybuilding still, come warm weather , like this weekend I'll have my racing chair out.

    Mr Happy is dead and buried, just something to prove i'm male in competitions. Folks get all wierd cuz I hobble about the gym, lift heavy ass weight, but need a chair at museums and malls. Scr*w em.

    At 55 and 22 years clean and sober, it's just part of life. I don't get angry, i get big (and sometimes a tattoo)

    I had to self pay because my carrier requires a disabled diagnosis to approve a chair. Which was cool cuz then i could get what i wanted using deferred spending card.

    Spinners rock.

    Arn and others can attest to how much benefit strenuous exercise can help over time. Hurts like hell at first, but u get hooked on the endorphins and the pain goes away.

    be strong, bro.

    Brock

  7. #7
    There is no reason to struggle with your mobility. You absolutely can and if you want to, should use a chair. You can still use those legs and feet to get around a step or two or three.... You should not feel bad or guilty about this. You need to do what is right for you and get back out there.

    Yes, your pain doc can refer you to a seating clinic or PT that has seating experience. There are many options out there and there is no way that they can be detailed on this site. There are also many different cushions and seating systems that may make your pain more tolerable.

    Hope that this helps.

    CKF

  8. #8
    Moderator jody's Avatar
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    so sorry about your pop bollefen. my deep condolences. I am cauda equina, and use a chair sometimes. I have a crutch cain holder on the back, so it is obvious I can and do walk some. probably better than you do. you should use what ever means you can to have a full mobile life. you need also to apply for a parking placard. I use mine very rarely but sometimes it is just nessasary. you can get the ap at social security office or the department of moter vehicles. your doctor must fill it out, and you mail it in. I am able to get through the day when using wheels. I tire easily when walking or standing. pain is very tiring both to body and mind. see a physiatrist (sp?)about getting you a chair prescription. often times pain doctors are physiatrists too. at least two that I have seen are both. I use my trike which I can pedal by strapping one foot on pedal, and pedaling with the good leg, like I would a wheelchair to get around town, also with my crutches or canes on the back. that way I have gained some good streinth and tone, and it is less painfull than walking.

  9. #9
    Ket Kit, if your physiatrist doesn't do wheelchair fittings in his/her office, s/he can write you scripts for an evaluation and refer you to someone who does.

    As far as how I made the mental adjustment, it wasn't as much a matter of finding life using a chair acceptable as it was reaching a point that my life as a walkie became unacceptable. I was at a point with my legs similar to where you seem to be now, which wasn't made any easier because it happened at the same time my as yet undiagnosed lung disease was at its worst. I could barely breathe through the constant, dry hacking cough when I wasn't exerting myself, so trying to walk more than a short distance on my weak legs was impossible.

    It was the isolation that forced me to admit it was time for a chair. On top of no longer being able to do anything that required waking more than a short distance in my personal life, I was still employed more than FT and had been forced to start working from home because my office was located up four narrow flights of stairs on the top floor of an historic home on Capitol Hill (ironically, I was working for the national ACLU at the time, right across the street from the US Supreme Court -- in the very building where much of the language of the ADA was written).

    As I wrote in the Pain Forum thread, the real leap toward acceptance came when I sat down in a lightweight, rigid frame chair fitted to me and gave my first push. After the crappy rental Quickie I'd been using, the power of a push needed to move the rental a few feet forward almost caused me to pop a wheelie before it sent me sailing 15 feet or so across the tile floor. The second I realized I could go ten times as far in the chair using one-tenth of the exertion, and with NO PAIN, I started to accept that being a chair user might not be as bad as I made it out to be. Right after leaving the DME, I went to the mall with the HipHubby and for the first time in decades, I was able to get everywhere in the mall I wanted to go under my own power. The exhilaration of the freedom and independence I felt did wonders to quiet the self-image issues I had with being a wheelie.

    I think the fact that I was a part time wheeler helped. I was the opposite of Arndog in that I used the chair to go out and walked when I was at home.

    Never had a problem with feeling as though the chair was a cop-out -- after years of having to ration my energy, I appreciated anything that left me with more energy to do the things I wanted to do (go out with friends, get out of bed on the weekends) instead of being limited to the things I had to do (go to work, grocery shop, etc.) Felt a little odd getting up out of the chair to walk short distances -- like getting on to an airplane -- until I realized that the only one who really took note of the fact that I was doing this was me.


    The hardest part of coming to grips with being in a chair was catching sight of myself reflected in the glass of a storefront or a mirror. It still catches me off guard to this day. It's also tough at times when I encounter the idiots in the world who think that using wheels to get around means you're either deaf or brain dead, who pat you on the head (yes, it happens, and by people who should know better), and it does get old to always be eye level with crotches and butts.

    I guess this is all a long winded way of saying that the reality of making the transition to wheelchair use was a whole lot less traumatic than the *thoughts* of becoming a chair user. Before you actually experience the benefits, all you have to go on are the stigmas that ABs have.

    Give it a try with a quality, lightweight chair and see if it works for you. Once you get a renewed taste of the freedom of mobility you once had, I think your fears and negativity about it will rapidly started to fade away.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  10. #10
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    Thumbs up

    Quote Originally Posted by bollefen View Post
    Time flies, or actually not. Going on 6 years now. I've become more and more of a recluse as I cannot walk much. It is really more pain than anything but it has reached a point where if there is no close space I won't leave the car, don't go anywhere that requires more than 100 feet of walking. Also can't stand for more than a bit.

    Tremendous internal conflict as I am physically ambulatory, and still a warrior at heart. No right foot sensation and foot drop (mild). Fall down a couple times a week now.

    Started something on this a couple weeks ago, then dad went into hospital and died, service last night.

    I had lost motor control prior to my surgery and when I gained it back I thought I was home free and got a free pass. Instead the pain remains 9-10 and i get spasm and spastic episodes daily round the clock, not continuous. Got B&B but Mr happy is essentially non functional no "wood" with the constant pain.

    I want / need to get out. Past 2-3 years surgeries and complications kept me down and I can't take it.

    I'd feel foolish though, wheeling along with my camera and getting out of the chair for a minute or 2 to take a photo. But now I don't even go.

    I feel foolish knowing how desperately so many here would give for a few steps.

    How many Cauda Equina use wheels?

    If you were walking (HC I'm thinking of you) how do you mentally adjust?

    Why do I feel like I'm giving up?

    How do you get wheels? My pain doc is the only one I see regularly, ortho and neuro while friends, have said I'm deteriorating salvage with no options. My pain doc is a physiatrist can he get me wheels?

    Life is a gift that is passing me by.

    Very sad today, a bit depressed but not terribly, more sad. I'd like a rest from this. Even just an hour.
    Hi Bill,
    So sorry buddy to hear that your having so much pain. Like the others before me have said you should be using a chair. I think it will help you in due time to feel so much happier & get to enjoy things more. I to can do some walking but not long distances. I use my power chair to help with my pain control. I can't stand for long periods of time or walk long distances. I If I didn't have my power or manual chair I wouldn't be able to go grocery shopping or to places like Busch Gardens etc. This July I'm flying for the first time with my power chair to attend the National Veterans Wheelchair Games. If I didn't have the chair I wouldn't be able to go.

    Don't go to a Durable Medical Equipment dealer after you get the RX from your doctor go to a Seating Clinic for the proper choice of chair & for the proper fitting. They know best when it comes to what chair will be the best one for you. Also reach out to SCI_OTR here on Care Cure. He is a wheelchair user himself & also an occupational therapist I believe at the VA Hospital SCI Center in Cleveland Ohio. He has helped others here on Care Cure a lot with their chairs & answered their questions.

    Hope you get your chair soon. So your no longer a recluse so you can get out & enjoy life the best that you can & as often as you can. Look at your chair as tool that you use to get around so your not putting a lot of stress & strain on your body & causing your pain level to flare up.

    I wish you the best.

    Bob S.

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