34 replies to this topic

[Survivor35]

Hey all. I've been pondering over something my doctors have told me repeatedly... give it 2 years. 2 years post injury, and more than likely you are going to gain at least something back... maybe an inch or so of sensation, or some tiny amount of movement, something... I'm starting to wonder if this happens, how often, and what everyone elses expieriences have been with this so called 2 year mark?
So, anyone care to share a story of some sort of return? I've got one more year to go before I hit that point, but I'm starting to think that its not as common as my docs have claimed.

[Santa Cruz Soul Surfer (LRO)]

My injury is fairly new as well (8 months). Although I have regained control of my right foot/ankle, I have no knee felxion ability and my left leg remains totaly paralyzed....I suppose I can only hope things will repair themselves with time, I've been told by countless doctors that a aggressive rehab program is the best way to heal damaged nerves.

[Tarkus]

I'm two years post with an incomplete injury and I have been very lucky with this.

I have regained some sensation and motor function since the injury. Now the things that were said to be "shot" in the beginning are still of little use but there has been improvement.

Be Big,
Alan

[giorgos]

i had my injury about one an and half year ago.. i am a t6 compress. my doc said "don t worry in about one year you ll be standing again" but nothing yet... i can steel not move or feel anything under my chest... and i don't thing there 's gonna change something..

[Jodie Lynn]

I myself am a year and eight months post, I have had alot of return already and it seems to keep coming but it is a very very slow process, so keep your head up the doc told me I would never walk again or have feeling or movement from the waist down and I have the movement except fully in my feet but that too is returning, feeling is coming slowly too.. I am a T-7 incomplete by the way..


Jodie Lynn

[itsjustme]

Well, I'm almost 3 years out as of March 17 of this year. After my lamenectomy I was complete about 2" above my belly button down. The first movement that I regained was just a little in my left big toe. Now I have hip flexion on both sides. I can move my left foot and ankle and bend my knee somewhat. I have some sensation in the entire left leg. I pretty much have gained nothing more than the limited hip flexion on my right side.

However, I still can't bear weight. Just because I can feel some touch and pick my leg up off of the bed or foot plate, I still don't know where it is. It's still numb. It still feels dead. If sensation and movement don't equate to weight bearing at least then I'd rather be complete unless there are advantages that I'm just not aware of because it just makes sitting more uncomfortable. It's like in my case, I feel the numbness of sitting on my butt for hours. Now in my head I think that that someone who is complete doesn't feel anything. Am I correct or not? My daughter constantly wants to work with me but at this point if I'm not going to regain any mobility I DON'T want to feel anymore than I already do.

On the other hand, don't discount all of those people who were paralyzed, my own cousin included, who were told that they would never walk again and they have made miraculous recoveries. The fact is that the doctors can't predict with 100% certainty what your body is going to do or how it is going to recover. Just keep on keepin' on....don't let anyone take your hope because nobody knows what your body is going to do.

It took my cousin a lot of hard work and therapy but she made a 100% recovery. She walks unaided and is back to a normal life.

[McRobb]

Santa Cruz Soul Surfer (LRO), on Jan 9 2007, 04:51 PM, said:

My injury is fairly new as well (8 months). Although I have regained control of my right foot/ankle, I have no knee felxion ability and my left leg remains totaly paralyzed....I suppose I can only hope things will repair themselves with time, I've been told by countless doctors that a aggressive rehab program is the best way to heal damaged nerves.

Hello to all - I am a newbie on this site but wanted to answer your post. I have been a para since May 2004 from a head on collision. I was told to give it 2 years as well and I wondered why that seemed to be the "magic number" that everyone was stuck on.

But I will have to admit that at the end of two years something just clicked and things were suddenly much better. I did not regain much movement - just was able to move the front of my right foot up and down - but everything seemed to go better. I did not have so much trouble with pressure sores, bladder infection, bowel program got better, equipment worked better and did not break down so much, etc. And, my attitude was better as well.

So, take heart, things do seem better most of the time after that two year time mark. Best wishes.

[sasv]

Hi there everyone, this is my first post btw.

I've been an incomplete paraplegic (T12/L1) for 6 years (gosh, been that long?!). All SCI's are unique and I would'nt want to think that there is a hard and fast rule of 2 years that apply to all injuries. In my own experience I have found continiuos improvement not so much in regaining sensation etc but certainly in mobility and capability. Eg 3 Years ago I started to use my right leg to operate my (auto) car's accelerator by using the remaining function of my upper leg. Two years ago I could also use my left leg in similar manner to brake. Last year I passed my driver licence re-test without any hand controls.

[Santa Cruz Soul Surfer (LRO)]

Are you able to walk yet?

[bambam]

Touchy subject. I am 17 years post injury and I have seen a variety of people heal in different ways. Some seemed totally miraculous, some seemed to go continuously down hill, and I have witnessed many variations in between. I personally think healing from disability is about adjustment. It isn't necessarily about the precise details of what you get back and what you don't. Of course, getting feeling and movement back is huge, but feeling and movement in itself won't make you happy and successful.

I learned a great lesson in rehab. I was in occupational therapy sitting next to a guy who was a complete C3-4 quad and a woman who had lost the half of the range of one of her fingers. The woman was hysterical thinking her life was over and the C3-4 quad sitting next to her was cracking jokes and making the best of the current situation. Not to say it isn't ok to be devastated over a loss, it is totally healthy, ok, and normal. Although, what it taught me is that I'd rather try to make the best of the situation rather than sit around and bawl.

We all get to decide for ourselves how to deal. Accomplishing dreams in a disabled body can be done but it may require certain adjustments. If you were an Olympic skier and you want the gold, you may need to join a disabled ski team and work your way back up.

The 2 year mark was about right for me. I didn't really get any movement back, a little sensation maybe. The 2 year mark was when I had determined what things I was going to be able to do and not do. People with exactly the same injury as me decided they would do more than I have, and they did. And of course it works the other way too.

Be careful about "everything will be great when [my disability goes away]". Work hard to get whatever you can back, and get really strong with what you have at the same time. You can get better whether your nerves / muscles return or not.

[Tinbasher]

Return is a complicated issue, be careful what you wish for.

In the first ten years or so I got enough return to stand, walk with braces and crutches but no sensation so I dont know where my legs actually are! I had lots of return which just amounted to feeling pain and no benefit.

Then about two years ago almost 20 years post injury I started to feel that my bladder and bowels were full but at the same time I lost the ability to "squeeze out" anything so I am now entirely reliant on SIC and a full BP. Before that I Cathed in the morning and evening and managed to squeeze some out in between. After some tests at my unit they thought that my ability to hold it in has now overcome the natural tone of my bladder sphincter!

This has on the whole not been a benefit as I still have no external sensation below my injury just this discomfort and not being able to "nip for a quick pee".

T

[Trail-Boss]

Hi!!!
This is "Stick-Tight", Trail-Boss's" wife.
His injury was Jan. 5th, 2006. Doctors told us that he only had a 15 percent chance to get off the ventilater. A week and a half before he came home (April 2006) they had him signed up for nursing homes. He said Bull-____, and he got off it. They said 2percent chance he'd even wiggle a finger. Well I'm here to tell you, He is totally breathing on his own, He can almost touch his face with his right hand , His right leg and foot are about as good as mine. His goal is to kick me in the ass oneday again .I got my wish already, a hug, it was weak but none the less , it was a hug. His left side is a bit weaker, but I think it will catch up.
The doctors told my husband it was because of his attitude and his great sense of humor that he is doing so well. I can't wait to see where he'll be at the two year mark.
Until then it'll be alot of hard work and prayer.
BELIEVE !!!!!!!!!
Every injury is different, just like your own finger print.
Just never give up.


C/5 incomplete

[juls]

That's really wonderful to hear, Stick-Tight By the sounds of it i'm sure he'll be kicking your arse in no time Always great to know that it actually does 'happen' to some people

[Kwaka]

18th Sepember 2005 i came off my bike - my partner, Debbie, was told i had virtually no chance of making a recovery, i was told only that i had a serious injury (C3/C4 incomplete).
16 months on, i can do everything i could do before just a lot slower (and i resemble a thunderbirds puppet when i'm doing it)
Fellow patients who i am still in touch with have been told "you will never do this or you will never do that" - I have seen them doing things they were told were impossible!
I have never accepted that i was paralysed, just that i was injured and if i kept going i would eventually get better than what i was.
Each case is individual but i honestly believe mental strength is a formidable weapon so in some respects my obstinate/stubborn streak has been a benefit.

[Trail-Boss]

Kwaka, on Jan 14 2007, 02:59 AM, said:

18th Sepember 2005 i came off my bike - my partner, Debbie, was told i had virtually no chance of making a recovery, i was told only that i had a serious injury (C3/C4 incomplete).
16 months on, i can do everything i could do before just a lot slower (and i resemble a thunderbirds puppet when i'm doing it)
Fellow patients who i am still in touch with have been told "you will never do this or you will never do that" - I have seen them doing things they were told were impossible!
I have never accepted that i was paralysed, just that i was injured and if i kept going i would eventually get better than what i was.
Each case is individual but i honestly believe mental strength is a formidable weapon so in some respects my obstinate/stubborn streak has been a benefit.

"AMEN"
Sounds like we're on the same track.
But I better get after it, so I can catch up to ya.
I broke C4 and C5, the doc's called me a C4 complete.
Now they say I'm a C5 incomplete.
Complete, incomplete, what the hell!!!

[sasv]

Kwaka, on Jan 14 2007, 10:59 AM, said:

Fellow patients who i am still in touch with have been told "you will never do this or you will never do that" - I have seen them doing things they were told were impossible!

I agree. Believing the opinion of medical experts is the last thing we should do!

[bunkalar]

Are you complete or incomplete, that makes a big difference. Not that a complete cant get anything back. I'm a c 6/7 Quad complete. I was also told by someone once that after about two years I'll start to get some back. I passed the two-year mark a couple months ago and I've got nothing back except a little movement in a couple of fingers. I think that the vast majority of completes don't get much if anything back but if they do everyone hears aboutit. Every injury is different and no doctor can predict exactly what's going to happen. I think it all depends on the severity of the bruise. It's easy for somebody who has gotten something back or is incomplete to say just believe.

[Survivor35]

They say I'm a complete... however, I haven't had an MRI or anything done since the days following the accident... so I dont know what the extent of the damage to the cord was, they obviously couldn't tell due to the swelling. That will be addressed soon, hopefully, I need to know for my own sanity. (However, with the state med coverage that I have, they dont consider this a medical necessity, so they wont cover it... waiting for insurance settlements to come thru so I can pay for it myself...)

And, while I was still in Rehab, 3 months post injury, at T6 complete, I couldn't move below my sternum, obviously, no sensation no muscle control. However, on my daughters first visit, she tripped over the feet of my chair, and started to fall... I instinctively caught her, bending almost in half at my waist... and sat back up. I could feel it, and move my abs for the first time... I can now wiggle my hips. I still have no physical sensation, but I can move all of those muscles. So, in theory, doesn't that make this an incomplete injury? I cant get a straight answer from anyone... its soooo frustrating.

[bunkalar]

To my knowledge if you have sensation or movement below your level of injury you are incomplete. Doesn't mean you are going to keep on getting more movement and sensation. I was told that the more you get back right away the more you will get back and that the longer you go without getting anything back the more likely you won't get any more back. But, anything can happen. How long has it been since your injury? Another thing, I'm pretty sure doctors will not be able to tell you if you are going to get anything back by looking at an MRI or by looking at your spinal cord. The only way you're going to know if you are going to get anything back is by actually getting it back. I do hope you get everything back, and I wish you the best.

[WheelsWithAttitude]

I guess this question is more aimed at the incomplete SCI's here, but...

I am a T10 complete and they pretty much told me not to expect anything to return, whatsoever, a few weeks into treatment.

Matter of fact, they 'used' me to show a typical compl. injury to the cord, whenever they had new ppl on the staff, to tag along, while I was there.
Still did not male ma feel better but at least I kind of not ever got my hopes up.

My accident was 5 years ago, and have not gained any function or sensation back as predicted, so I am not really hoping either now.

Edited by WheelsWithAttitude, 05 February 2007 - 10:16 AM.

[Deej]

I'm also a complete injury - almost 13 years now and I never regained anything from the first, except that I get some 'tell tale' tummy spasms when I have a full bladder - but that is just the dysreflexia.
When I was initially told at about 6 weeks post injury that I was complete and this was my life now so get on with it, I was so angry with the doctors and tried to wiggle my toes for months, but to no avail. I had heard stories of people walking again and decided I was going to be one of them.
Anyway after 12 months I returned to work and did get on with my life and now I realise that I think the doctors are right not to give false hope, because they want you to have a fulfilled life and make the most of what you still have instead of spending months, maybe years living on hope and determination. They also need to get you rehabilitated for life in a chair as quickly as possible so they can have your hospital bed back for the next patient, and I understand this, they have a job to do.
Don't get me wrong I have great admiration for anyone who works hard enough to get some return of their sensation or motor function. I am just saying that it is just not possible for some of us and we need to accept our lives as they are now and get on enjoying life.
I certainly do not feel let down by the medical profession or myself in any way.

[Lucydog]

I think its more a case of things changing...

for the first year I seemed to go along quite steadily, I had some bladder control and could take a few steps. Over the last 16 months my baldder has pretty much packed up completly and I have to rely on a variety of catheters depending on what my urologist goes with. My bowels go from all or nothing and control is pretty spasmodic. Ive also almost lost any of the walking ability I had left, I can now just about stand up while holding on to something. But hey I have really good feeling around my knees, completely useless, but its there.....!!

So things do change but not always for the best.

cheers
L

[smokymtn memories]

I realize it's been a while since ya'll have been on here, but for recent injuries or fairly recent ones, the subject is one the doctors don't seem to be able to answer. At least mine won't, he's a good doctor out of Knoxville, I greatly appreciate everything he's done for me. He's told me more than once he can't honestly answer how things will go for me, everyone is different. Which is one reason why I suppose it's so hard to find anything on line to compare yourself to. There's no way to "clock" your progress. With no health insurance, I was'nt able to go to PT. I've had to just do the best I can on my own doing exercises and figuring out the best way to do things. Have my life was spent in an office working, and yet before the surgery all I could do was pretty much two finger typing. My hands hurt and burn (especially my right) but I've been making myself type more and more on the computer and I am getting better at it! I'd like to know if this burning that started when my nerves began to "heal", will it ever stop??? I have a lot of problems with burning in my hands, legs, feet, and on occasion - my rear. Boy do I hate that one! Since I'm on my rear most of the time! I get muscle spasms too. Before the surgery it could be from the neck down and sometimes severe. Now, it seems to be mostly from the waist down if I've been laying down or sitting too long. Doc put me on Gabapentin to try and control the burning and spasms, it's helped, but I still get some UGLY days! Sorry to be so whiny, I don't mean to be! I keep telling myself, things could definitely be worse!!

[Survivor35]

Okay, update here!!! Just to let everyone know, and I am soooo excited, I finally got in with Kennedy Krieger Spinal Cord Institute, here in Baltimore, MD, in the states. I've been noticing some improvements, but couldn't get my damn doctors to listen to me, so I went above their heads... I mean, the wouldn't even order another MRI, I haven't had one since injury....

But anyway, to make a verrrrryyyy long story short, they have told me that while I started as a T6 complete, Asia A para, they now consider me a T8 Incomplete, Asia B, with motor ability down to T11..... WOO HOOOOO!!!!!!!!!!! It was an exciting day, and she has ordered MRIs, because she doesn't feel there is any way possible that my Cord was actually severed... they are getting me an FES Bike for home, and want to get me involved in some of the more intense therapies... Walk again? Haha, I doubt it. But return of anything, without the therapies, is encouraging enough to keep trying for more return, right?

Anyway, had to brag on the situation. I'm SOOOO happy.

[smokymtn memories]

Good for you! I don't know what you're doing, but keep doing it! Always hope and work for more, it could'nt hurt! In the mean time, a little prayer could'nt hurt either. Again, congrats!

[ParaforGod]

Thats great Survivor35. Im so happy for you. I am a T4 complete and my spinal cord was severed so I was told that unless the medical field came up with something new I will in all probability be in a chair for the rest of my life. Yet Shephard Centers moto is never say never. I don't exspect to ever walk again but thats ok because God is still good and I have a good life. So good to hear the good news. Keep up the good work.

[RacingAxe]

Survivor35, on Jun 6 2007, 12:29 PM, said:

Okay, update here!!! Just to let everyone know, and I am soooo excited, I finally got in with Kennedy Krieger Spinal Cord Institute, here in Baltimore, MD, in the states. I've been noticing some improvements, but couldn't get my damn doctors to listen to me, so I went above their heads... I mean, the wouldn't even order another MRI, I haven't had one since injury....

But anyway, to make a verrrrryyyy long story short, they have told me that while I started as a T6 complete, Asia A para, they now consider me a T8 Incomplete, Asia B, with motor ability down to T11..... WOO HOOOOO!!!!!!!!!!! It was an exciting day, and she has ordered MRIs, because she doesn't feel there is any way possible that my Cord was actually severed... they are getting me an FES Bike for home, and want to get me involved in some of the more intense therapies... Walk again? Haha, I doubt it. But return of anything, without the therapies, is encouraging enough to keep trying for more return, right?

Anyway, had to brag on the situation. I'm SOOOO happy.

That is very good news! I know you posted this over a month ago but congratulations! I had an MRI done a couple months ago and was told I have about 20% of my cord at my injury so I'm still hopeful to get more return myself. I haven't had an examination for classifying my injury since being an inpatient but I'll bet you were elated to hear the new rating. I'm very happy for you and to hear that you've made progress.

[hockeydahc]

Survivor35, on Jun 6 2007, 11:29 AM, said:

Okay, update here!!! Just to let everyone know, and I am soooo excited, I finally got in with Kennedy Krieger Spinal Cord Institute, here in Baltimore, MD, in the states. I've been noticing some improvements, but couldn't get my damn doctors to listen to me, so I went above their heads... I mean, the wouldn't even order another MRI, I haven't had one since injury....

But anyway, to make a verrrrryyyy long story short, they have told me that while I started as a T6 complete, Asia A para, they now consider me a T8 Incomplete, Asia B, with motor ability down to T11..... WOO HOOOOO!!!!!!!!!!! It was an exciting day, and she has ordered MRIs, because she doesn't feel there is any way possible that my Cord was actually severed... they are getting me an FES Bike for home, and want to get me involved in some of the more intense therapies... Walk again? Haha, I doubt it. But return of anything, without the therapies, is encouraging enough to keep trying for more return, right?

Anyway, had to brag on the situation. I'm SOOOO happy.

Must be those two doctors we sent you. My two doctors from here accepted positions there a few years back. i was sorry to hear she was leaving, yet I knew it was for the better. now theres proof! Congrats on the news!

[Scoot]

I had a motorcycle accident some 16 years ago and the thought of "will anything return" was, for obvious reasons, in the forefront of my mind for some time after my accident. I was in Lodge Moor (now Northern General) and the doctors certainly didn't dress the situation up for me. I was told in no uncertain terms that I would never walk again. At the age of 16, or any age for that matter, it is very difficult to take on board what they are telling you. I do feel that it is "questionable" whether a doctor should tell you that you may see some changes in your condition in a two year time frame. Coincidentally it took me approx 2 years to finally get my head around how my life had altered but what I did know was I wouldn't walk again.

Every person is different when it comes to dealing with a life altering experience the likes of which we have all gone through so a doctor telling you that things may alter in the next 2 years could possibly do more damage than good as you are holding onto something that could end in total dissapointment.

In the last 16 years my paralysis hasn't changed at all. Now I don't want people to think that I am bitter because of that fact. On the contrary, my life is fantastic. I have a good job a house and a beautiful wife and hopefully soon will have kids.

My personal feeling is that you should strive to make the most of your life. Given the fact that you are unable to do as much as before doesn't mean that your life is over. Being in a wheelchair isn't easy at times and different people deal with it in different ways.

What I would say is grasp life and live it as fully as you possible can.

[ryan08/06/88]

Soemone I know is T3 complete and had their accident about 6 years ago but this year they realised they could feel and wiggle their big toe...although nothing else...

Personally mine has moved down since my accident...When I first had it (june 2005) I had nothing below my nipples ish...T5 complete...but in bed I noticed I could move the top 2 abs and its sort of moved down a bit...theyre pretty useless but I've definitely regained some function in my upper abs...also the sensation moved down too...but my right side like the side muscles etc work to quite far down...possibly as far as t9 I'm not sure, but on the left it's still pretty high and the same with the feeling...Also I'm pretty sure I can feel deep touch in my belly button kinda area...I could when I was at hospital anyway...but it was really faint and almost felt like it was in the muscle...

Nothing useful though

I broke T6 and T7 btw. So level is T5

Edited by ryan08/06/88, 11 November 2007 - 04:05 PM.