How many people are "walking quads"?

[Wise Young]

Many people with "incomplete" spinal cord injuries recover substantial function, often to the point of walking. I wonder how many of our members are walking quads/paras? Can you describe your experience?

[gvinton]

C5/6 walking quad here, 19 months post. I started walking in rehab at about 4 weeks. I've been very fortunate and have had a very significant recovery.

Most recently I'm actually starting to run fairly well. I work out often and am still seeing improvements in my strength and agility. I've posted details of my recovery here many times but if anyone would like to talk feel free to email me.

Gvinton:

Your story is very inspirational. You are very blessed to have such a speedy recovery.

I do not have your e-mail address to send this to you privately so I will have to ask you here. Did the doctors tell you that you would never walk again? Was your injury complete or incomplete? I'm new to SCI so I have a lot of questions. If you wouldn't mind sending me an e-mail I would love a response. My address is kiwis7@aol.com.

Thank you and I look forward to hearing from you.

[gvinton]

Big Sister,

Upon arrival in the ER they initially thought I may be complete but changed this pretty quickly. Prior to my surgery on the second day they told my whole family that I would likely never walk again...

By the way, you can get my email address by clicking on the icon above my avatar (picture) and viewing my "public profile".

[brucealexander]

Before reading my post please note that I was injured in 1976 treatment has changed so much.

I was originally diagnosed complete. The doctors drilled holes in my scalp and placed me in a halo type of traction with weights till the fracture was stable. About 8 weeks.
It was during this time my new bride said sorry and good bye. I was depressed but gained new strength from some where.
Physiotherapists would streach my muscles daily. After a few weeks the big toe on my right foot regained feeling and gradually movement. In time that progressed to involve both legs.
My diagnoses changed to incomplete C5/6 brown sequard.
Slowly I regained sensation in my right arm then the left.
One day a cleaner banged the weights with her mop. That night the halo fell out and crashed to the floor. Lucky the injury was stable and I was placed in a full neck and chest collar.
Over the next 3 or 4 months I regained power to walk with a stick and ditch the chair. It was probably 6 months and I was walking unaided.
Since then I have completed a full circle.
Now I am only just able to walk aided. I recently progressed to an electric wheelchair.
A syrinx and pain has taken over. Three surgical procedures to help remove adhesions were usless.
After a recent MRI it was interesting to read that doctors are unable to understand how with my injuries I am able to move at all.
Because of our injuries we work harder with what function we regain if any. In doing so our bodies seem to wear out quicker then AB. One neuro told me the axons break down. I know a para from my era who cannot use his arms because he has worn out his shoulders.
In closing Doctor Young I asked your advice a short time ago regarding surgery. After receiving that advice I went ahead on 7/3/03. Adhesions were dethered from the front of the cord as was a piece of silicon put there in another procedure. The pain still persists so I guess I won't die wondering.
As a walking incomplete quad it is interesting to acknowledge the following similarities. Incontinence, lack of sensation, touch, dysfuctional erections etc. For some unexplained reason a few with spinal injury walk.

Pops

[bruce]

I'm C6 and also was initially diagnosed as complete. Fortunately they didn't tell me, they only tortured my wife with that information. I had shattered my C6 and had a C6/7 dislocation. The ER doc told her to expect that I wouldn't feel or move anything below my chest.

The day after my accident, a doctor did a complete neurological exam (I have a copy of the chart, she gave me an ASIA B score). Afterwards, she was talking to another Dr. with my wife present, and said: "I think he leaves here in 12 weeks a complete quad." The other Dr. said: "Well, I'm not so sure," and he was right.

At a month post I was "upgraded" to ASIA C, as I had recovered significant movement in my left leg. A two months post, I got a flicker of movement in my right leg. At four months post, during my first exam with my outpatient rehab doctor, he diagnosed me with Brown-Sequard syndrome and told me that I would most likely walk again, if I worked my ass off. So I did.

At nine months, I could walk in parallel bars with a KAFO, and shortly thereafter short distances with a walker. I couldn't, however, stand by myself .. I had to have someone hoist me to my feet.

At about a year I moved to an ASIA D score. At a year-and-a-half, I could stand from a normal-height chair with a walker and walk without any bracing. This was the beginning of functional walking for me.

Today at a bit over two-years post, I can walk reasonably well with a walker or crutches. I can go up and down stairs, and spend most of the time out of the chair. For example, today I parked the chair at 7:30 am when I left the house and haven't used it since. If I have to go somewhere far or fast, then I use it.

While I haven't used a brace for quite a while, I am getting an AFO made because as I walk faster and farther, my weaker right leg has some problems with toe drag and knee hyperextension especially as it gets tired.

I have walked with a cane in controlled conditions. My PT thinks that in another year I should be using the cane out there in the world as I continue to work out and get stronger. Actually my biggest challenge is strengthening my trunk muscles, particularly my hip extensors.

Pops, your story is a cautionary one. I have wondered how we will hold up as we age. I'm 47 now and want to keep everything I've got for as long as I can, as we all do, huh?

[Wise Young]

Bump. With only 33 people responding, over 50% of people who were "incomplete" initially after spinal cord injury are now walking. Come, all people who were "incomplete", i.e. ASIA B, C, or D should vote. People who had "complete" but are walking should also be voting. I know that there are some of you out there. Wise.

[SCI-Nurse]

I don't think a lot of the regular forum users come to this forum. I will post a link here from the Life forum and see if we can't get more responses.

(KLD)

[Wise Young]

KLD, thanks. Based on these results, it looks as if about half the people with "incomplete" injuries recovered walking, most more than a year after injury. None of people with so-called "complete" spinal cord injuries recovered walking. You know, it is really interesting that you cannot find this information published anywhere in the medical literature. I think that if I had been asked before this how many people walked after incomplete spinal cord injury, I would not have guessed so many. Wise.

[dogger]

i'm a ''walker'' , never owned a wheelchair , but occasionally use crutches . C5/6 incomplete , 12 years post .

thank you
dogger

every day i wake up is a good one .

[beelady]

I have seen the results of the poll and have given my answer. I am wondering what my sons chances of walking are though, even with those percents. I have been afraid to get the answer from his Dr. at TIRR so pray everyday for him to move something. He broke C7 but has very good if not perfect arm movement but alot of weakness in his right hand. He has always had feeling in his entire body since the day of the accident but it isnt normal but still seems to improve, very slowly. He knows when he needs to cath and has pressure before he does his bowel program, His legs sweat (but at that time he was wearing tedhose) He has been injured 5 1/2 months. Do those signs point to a good chance of recovery or is this more typical and we still have to wait and see? Thanks I forgot to mention that he has abs and back muscles, at least according to the biofeedback he was hooked up to yet he is very weak. He can do "girl" pushups very well, practically to where he is sitting back on his legs....but not quite.

[This message was edited by beelady on 05-27-03 at 05:38 PM.]

[dogger]

Beelady , i am not going to try to answer your question about your son walking . what i will say , is that he is gaining recovery well beyond his injury level and can possibly expect this to continue , most likely in ''fits and starts ''. i still see small returns at 12 years post . i would suggest you try the chat room , there are a number of incomplete quads who lurk around there at times , and may be able to answer some of your questions .

thank you
dogger

every day i wake up is a good one .

[beelady]

Originally posted by dogger:

Beelady , i am not going to try to answer your question about your son walking . what i will say , is that he is gaining recovery well beyond his injury level and can possibly expect this to continue , most likely in ''fits and starts ''. i still see small returns at 12 years post . i would suggest you try the chat room , there are a number of incomplete quads who lurk around there at times , and may be able to answer some of your questions .

thank you
dogger

every day i wake up is a good one .What is fits and starts? That is one I have never heard of.

[SCI-Nurse]

There is some data on this from the Model Systems Centers. According to their most recently published book (that is now nearly 10 years old), from 1972-1992, with over 5,000 cases included:

For those admitted ASIA A, 88.8% remained ASIA A at discharge from rehab, 5.0% were ASIA B, 2.9% were ASIA C, 2.8% ASIA D, and 0% ASIA D.

Fot those admitted ASIA B, 4.9% were ASIA A at discharge (worse), 48.9% remained ASIA B, 15.6% were ASIA C, 27.6% were ASIA D, and 0.7% were ASIA E.

For those admitted ASIA C, 1.9% were ASIA A (worse), 0.8% were ASIA B (worse), 41.4% ASIA C, 53.3% ASIA C, and 1.3% ASIA E.

For those admitted ASIA D, 0.5% were ASIA A at discharge (worse), 0.5% were ASIA B (worse), 0.8% were ASIA C (worse), 90.3% were ASIA D, and 6.5% were ASIA E.

This does not specifically address ambulation, but most people who are ASIA Ds ambulate at least part time, although sometimes requiring assistance. We also know that that now days MOST people with SCI are incomplete at the time of admission to rehab (ASIA B-D).

(KLD)

[dogger]

Beelady , ''fits and starts '' = at intermittent times into the future , is probably the best i can think of offhand .i hope this expains , it must be an Aussie expression .

thank you
dogger

every day i wake up is a good one .

[november]

Beelady
Hi...I'm 20/f. December 25, 2002 I was in a roll-over which resulted in a c6/c7 incomplete sci. I saw your post, it was eerie, felt like I was reading about myself almost. I have almost normal arm movement. My main prob is I don't have full finger extension in my right fingers. I also have sensation since the beginning and motor return to t-12 maybe L-1. No leg movement yet http://sci.rutgers.edu/forum/images/smilies/frown.gif...but I will!!! Anyways if you wanna talk let me know. Like I said, me and your son sound verrry similar....
Thanx
november

[SarahRN]

Wise (and all),

I surf this site alot but J, my paraplegic T5 complete ASIA - A buddy is too busy to come very often. If I could vote for him -- he is walking with RGO braces and walker - and he is now 4 years post injury.. learned to walk 3 months ago so it IS possible..

Presbynurse

[Wise Young]

Thanks, PresbyNurse.

There is also the question of what methylprednisolone does for people who are incomplete. According to the clinical trials, people who were incomplete at the time of admission and receive methylprednisolone within 8 hours recover approximately 75% of the motor function that they had lost. Most of the Model System Data were collected before the methylprednisolone was being routinely given to people with spinal cord injury. Wise.

[Kittyshrine]

I have an incomplete C5-C6 with central cord syndrome and Brown-Sequard syndromes. I also have a small cyst in my cord at approximately C-6 which was originally a hematoma. I was told I would walk but that it would take months. I walked in a month-and-a-half. In the past two years I did three short triathlons. Last year was a struggle and I eventually had to stop training. I developed feelings in my arms like I was being bitten by fire ants whenever I was in the sun on a hot day. I started having issues with overheating. In the end, whenever I would work out in heat I would end up very sick and in extreme pain from my face down. It is winter now and is a blessing. My neurologist has told me that everything I described was due to aging with my SCI. He let me know that my mobility would decrease over time. I don't know if he is right. No one in Austin seems to know what to do with me. It would be ironic if I ended up in a chair after walking for so long.

[Broknwing]

Kitty-
you need to see a new neurosurgeon ASAP! anytime you've got a
decrease in function that is NOT normal & is typically a sign of a syrinx. It sounds as if you've already been diagnosed with a syrinx but your dr is not treating it. I know there are others here more familiar w/TX and where you might want to go, but my firs guess would be to contact TIRR and see if they can recommend someone.

[darrel]

had a silent heart attack and fell off of a ladder and tried to see if I could touch my head to my butt. nope I can't.. I did learn that nose dives hurt less in water than on cement..
I had a lamenectomy of C3-C6 and ended up being C5/C6 incomplete and functioning at a C6 level. I walk about 200ft with the use of a quad cane. I have 70% return of left side and 30% return on right side I have drop foot and have use of thumbs, index fingers and middle fingers. 30lbs of grip with left hand and 10lbs grip in right hand. I started walking three weeks after my fall. I have other issues but that is for later.

[PeanutsLucy]

Call me stupid, but what is "gt" and "lt" ?

[In the wind]

C5-7 Incomplete but I don't walk. I think that if I could get qualified therapy, I would be a hellva lot closer to it

[Broknwing]

Call me stupid, but what is "gt" and "lt" ?

I believe there used to be symbols there...

gt= greater than
lt= less than

[PeanutsLucy]

Got it. Thanks.

In that case, my son is a walking para (L1 incomplete) but told his chances for recovery were not good. In fact, we were told he would face "severe mobility issues" for his entire life.

He started walking with KAFOs in the parallel bars about 6 weeks out. At 11 months, he's using forearm crutches and AFOs and can steadily walk about a half mile (he did a mile two weeks ago -- yippie!).

Though, he doesn't have much use of the muscles that control balance. Therefore, his abilities don't transfer well to places like to mall or mega-stores because most shoppers are too self-absorbed to even think there might be a disabled person in their path and I worry about him getting bumped and falling.

[vickylynn]

C6C7 WAS asia a now c but no leg movement just muscles firing . they told me at shephards they thought i would get a lot back wrong and i have tryed
but..... i am just sick and tired of feeling bad all the time. i usedto be so damn strong never sick but i am a wuss now

[AlexAgain]

Depends what is meant by "walking"
Walking in the physio gym but not functionally walking away from it.
I answered not walking.
I look forward to coming back in a few months to change my answer though.

[Wise Young]

I edited the poll.. It was a very old poll from 2003 and it was mistranslated. I edited it to place the correct ≤ and > symbols, as well as the question of the poll.

Alex, at the time of the poll, I left the definition of walking and "incomplete" to the person answering the poll. In retrospect, I probably should have emphasized the ASIA (American Spinal Injury Association) definition of "incomplete", i.e. presence of anal sensation and voluntary anal sphincter contraction. I probably should have emphasized walking by oneself without another person's assistance but using muscles of the legs with the use of canes, crutches, walkers, and braces.

Wise.

[soimumireland]

Son - Sean Age 6 2 years post on the 7th Feb. Not walking but working hard on standing without braces. Just finished 4 month programme Gait Training with the Kids Step Research project in the University of Florida.

[Buffie]

I am 11 mths post but not walking yet. I am c4/5 asia c, incomplete. I have a good amount of movement in my left leg and foot. Can only move little toe on right side, however I have a pt evaluation Feb 12 to determine if I am a good candidate for the neurorecovery network program at Shepherds to help me walk again.

[rhyang]

5.5 months post, asia D, injury below C4 (I believe that's how my rehab Dr. explained it). Walking unassisted (no gear). I was able to ditch my AFO, forearm crutches, and cane.

Well, I still keep the cane in the back seat of the car just in case ... left leg still fatigues easier.

[porchdog]

I went from total parlaysis to walking with a cane in approximately 9 months.
It was not easy and 5 1/2 years post it still isnt easy. I say total paralysis, I could move my arms but had to learn to use them. Could not push button to call for a nurse etc. All strength was gone. Makes me have more respect for a baby learning to walk. Definately hard work.

[Imight]

5.5 months post, asia D, injury below C4 (I believe that's how my rehab Dr. explained it). Walking unassisted (no gear). I was able to ditch my AFO, forearm crutches, and cane.

Well, I still keep the cane in the back seat of the car just in case ... left leg still fatigues easier.
you finally ditched the cane? congrats!!! :applaud:

you've recovered at the same pace as kevin everett, without NFL dollars, and facilities. jeez man, thats impressive!

[rhyang]

you finally ditched the cane? congrats!!! :applaud:

you've recovered at the same pace as kevin everett, without NFL dollars, and facilities. jeez man, thats impressive!

Thanks !! I actually haven't used the cane for about 6 weeks or so .. I did carry it around a lot though (as opposed to actually using it for walking). And anyway I've just had good luck ...

Keep up the good fight my friend - imo you should change your username to IWILL ;)

[smokymtn memories]

Cervical stenosis with myelopathy, C 4-5-6 and a blown disc at L 4 DDD, I'm eighteen months post surgery for my neck, posterier bone fusion.

I was unaware of any neck injury and it took almost two and a half years to get a diagnosis (no health insurance). I had lost quite a bit of function and was about ready for a full time wheel chair. I had been using a cane and still do. I was walking "better" probably a month after surgery.

I was'nt able to do PT or get any other kind of help because of the lack of insurance. I try to do what I can at home and know it's not enough. I still have issues with balance, my right side is worse than the left, B&B, and nasty burning and pain 24/7. I have had more of the burning and pain post surgery.

[Tiger Racing]

at the time of the poll, I left the definition of walking and "incomplete" to the person answering the poll. In retrospect, I probably should have emphasized the ASIA (American Spinal Injury Association) definition of "incomplete", i.e. presence of anal sensation and voluntary anal sphincter contraction.
I don't get those definitions. I never had a voluntary anal sphincter contraction, but I was able to stand and ambulate with a walker within months of my initial injury. I could even drive without hand controls and had quite a bit of sensation. Clearly I was "incomplete" so that ASIA scale just doesn't make sense to me.

C.

[SCI-Nurse]

Don't worry about the ASIA thing but it is helpfu for certain things and meant t be a quick way of describing someones functioning but since everyone is different it is what it is. Also used in research studies and to report advances etc..
Also you have to realize the ASIA can change.And should be done by someone who has been trained and is going to take the time to do it correctly.

You might have started out as an ASIA A r B but certainly aren't any more.

Also I have noticed I get pts that are ASIA C- I expect certain things from them and then I note in my eval they have very very weak movement and when I ask, they tell me they don't exercise the muscle(s) or use them any more -and they have weakened and just plain don't use them like they did in rehab and right after discharge (and these same people are not quite as independent in ADLs as they could be or once were and they admit just stopped doing this or that) .
So... the ASIA is a nice tool, can be hepful, but does not specifically describe everyone and it can change.

There is a term used in the ASIA- caled '"PP"- zone of partial preservation- those are the little areas where you can feel or maybe move a muscle move but it doesn't meet the criteria to change the ASIA score.

The scoring can be a litte complicated.

CWO

[mike]

I am a C5 incomplete and started walking about three weeks after my injury. My condition continued to improve for about two years and then stabilized at that level. About the time I stabilized re: muscle function I developed severe neuropathic pain which has continued to worsen up to now, eight years later. I exercise regularly, three to four times weekly using an eliptical workout machine, bicycle, and weight machines. I also do stretching exercises daily. I believe that my exercise regimen has helped maintain my condition.

[ima2003]

C5/6 incomplete walking with afo on left using a walker/crutches. i try to park my w/c and mostly walk throughout the day. still working on strengthening core muscles to maintain trunk control and balance. i'm 4 yrs post injury and a 55y/o fe. hopefully i can continue to make gains in spite of my age.:) i too have severe neuropathic pain....but like you mike i exercise and walk every day. it doesn't make the pain go away, but i figure i will have the pain with or without the exercise so why not move around as much as i can.

[SCI-Nurse]

I don't get those definitions. I never had a voluntary anal sphincter contraction, but I was able to stand and ambulate with a walker within months of my initial injury. I could even drive without hand controls and had quite a bit of sensation. Clearly I was "incomplete" so that ASIA scale just doesn't make sense to me.

You don't have to have voluntary anal sphincter contraction to be considered incomplete, but you do have to have anal sphincter SENSATION to be considered an ASIA B. I know a lot of people with ASIA B, C and D injuries (all incomplete) who don't have anal sphincter control.

ASIA D does mean that you have more than half your key muscles below the level of your injury which have a grade 3 or more voluntary muscle score, and you need a 3 or more for the muscle to be functional for use. It is this group that are often called "walking quads".

(KLD)

[Redskins5]

Fractured T5,T12, and burst L1 with a significant fracture to L2.

I am walking without any assistance with my date of injury being Oct. 12th 2007.

I had a fusion done randing from T11-L3.

[Riaan]

How do i know what asia am i? Is asia b good. I have sensation all over.dont sweat below my shoulders and no heat sensation below my shoulders. I can feel when my bladder is full although i leak sometimes.I have feeling in my anus.No movement in my hands. Left arm stronger than right. My hips feels like its getting stronger. Can move my legs with my hips in swiming pool,but not able to stand on it......

[Riaan]

What is my chances

[SCI-Nurse]

Ask your physiatrist if your ASIA category has changed. If you have weak movement below your level of injury you may now be an ASIA C. Generally though you would need to be an ASIA D in order to walk, since it generally requires that you have the majority of your key muscles below the level of your injury to have a motor score of 3 or better.

Meanwhile, you are still newly injured. Keep up the pool therapy, and get regular check-ups with your physiatrist so they can help to monitor the return you are getting.

(KLD)

[royandjoe]

3 years walking not ease bout i am still walking c7 t8 w/cyst t3t6 roy








[i wont give up]:nono:

[Imight]

it's not easy at all. and that alone makes it very difficult mentally.

what was once thoughtless, has become one of the most difficult things to do, and it SLOWLY gets better, but never easier. As soon as you master something like a braces, walker, crutches, etc, you have to move on to something harder.

Sometimes while walking in the morning to grab breakfast, I just feel like giving up and using my wheelchair. but that's the lazy way out and if I am capable of being upright, I feel thats how it should be.

Tought times. =(

[capecodsci]

I started walking about 8 months after injury -t12-L2 bust fractures- with kfo's and walker- I did rehab and worked very hard to move around --but I am in constant pain from my knees down and have alot of spasticity in my ankles/feet. I have a wheelchair and use it around the house -but it hurts like hell to sit for any length of time - I am always uncomfortable- My kids tell me I do the monster Mash when I walk - I am very slow-but i keep pushing ahead hoping one day for the cure for everyone with SCI

[joanne]

I am incomplete at C5 C6. I started to walk with a walker about week two after the injury. I was paralyzed for the first two weeks. I spent years in physical therapy. It will be 10 years this April. I went from a wheel chair, to a walker to a four prong to a cane and a brace.
I finally ditched the cane and the brace. I felt that if I depended on something to hold me up, then my body wouldn't get strong. It was true. I struggled for a while, but now you can't tell. I have drop foot and weakness on the right side. I lost most of my sensation on the left. The left burns constantly. It's been a long road with a lot of determination.

[momtocckc]

My husband was a C5/C6 in mid-January. He had his C5 replaced and C6 screwed back together. He is now fused from C4-C6. He has been walking unassisted for almost 1 month. He was paralyzed except his left leg at first (his left leg came back one day after his accident). His right leg began coming back about 1 1/2 weeks later, then his left hand another week or so later and then his right hand and tricep in the last couple of weeks. He's doing very, very well. His only real problem is strength at this point. He's a pretty typical Brown Sequard as far as feeling and movement have gone. He was an Asia B/C on arriving at the hospital and D on arriving at rehab two weeks later.

We've been very fortunate.

[Grammy73]

I am an incomplete C4-7. Walked away from an auto accident, suffered many wrong diagnosis. Almost a year later SCI is diagnosed.

Walking is limited to short distances as body becomes weak. Arms must be supported or breathing is painful. Right side tends to have more muscle spasms. Hands go numb all the time.