12 replies to this topic

[Jake731]

Hi, My name js Jake and I'm 16.

1 1/2 months ago i suffered from a cavernoma bleed in my spinal cord.
This occurred at t3/t4. I had surgery, had it removed, went to inpatient rehab for 3 weeks, and now I'm an outpatient. I started off in a wheelchair, then went to a walker, then went to a single point cane, now i just use my AFO brace to help me walk. All my therapist say I'm recovering really fast, but no one can tell me if i will have a full recovery. They say that since I'm improving so quickly, and I'm so young that it is possible. I need to know that incomplete injures can make full recoveries. I don't have a normal gait quite yet, but it is getting better. Has anyone herd of any full recoveries? Also, what are some ways to determine some sort of a long term prognosis? Thank you so much,

JAKE

[wheeliebear75]

I know that what you WANT to hear is "Yes everything will be OK in a few months & it'll be as though you never had this happen to you.", however.....odds are highly against it.

The bright side is that you ARE able to walk around with "just the AFO". I know that you'd like to be able to run up & down stairs like you USED TO be able to.....but at least you CAN walk without something like crutches or canes taking up those handy dandy HANDS!

Keep working at it....it's also possible that you can gain enough improvements to have an almost normal gait. After all.....you have had a LOT of return for such a short time.

[MTB John]

Lucky Bugger..

Are you continueing with any kind of Physio?
It's important to makes sure the smaller but no less important muscles (like the ones around the side of your hips - i forget their names) are being recruited properly otherwise you may have issues down the road.

Try to get as normal a gait pattern as you can and just keep looking for improvements..

Just keep at it and hope for the best.

Good luck..

[pinkcloud]

Hi there Jake...hey thats some progress to be achieving at all, let alone so quickly. Its brilliant to know that all that hard works going to end up as full recovery.

What i say now is relly really important. If it turns out that you dont progress to the degree that you want too..dont ever think its because you are not trying hard enough. All it will mean is that the nerves etc that work certain parts of the body have grew back differently to how they worked before. You may also be using the legs to walk, by using musles that you never used before injury.

Now yes i can honestly hand on heart i give you one true incomplete injury that was successful i knew personally..me physiotherapist friend...she had severe lumbar injury and
years and years later shes doing not one..but two physio jobs....yes her leg still gets very weak and numb when shes over used it but really its all minimal stuff.

I can honestly say that after me operation i did regain the ability to walk but sadly lost it again but as i now have found only because i got the same problem now as i did before the operation. It was also extreme agony, tiring and very un-enjoyable..but now i know its because i had a disc prolapse again...still..i contined ntil me legs wouldnt carry me no more. I had to break thorough the extreme pain to get to the next stage. i never ever walked and was bored doing it..if i walked it was only if fun could be had..even if that was just walking up with a friend and we were giggling.

I say i am glad that all them months of horrid, unbearable pains to walk..i managed it. Do you know how i started? Zimmerfrme then crutches to slide me feet l along the floors at hospital...the silly physios didnt even believe me that i couldnt walk properly...i didnt tell them as that was me freedom to get off that ward and to get me fags and conversation in fresh air. Also i forced meself to get them bladder/bowel working as noo way was i gonna be reliant on no nurses.So it didnt really matter that i coudnt walk like before...as long as i had incentives to do things...get to the loo meself, make me own drinks.....that alone wold be worth walking for.

You really are not wasting your hard efforts on nothing, its hard to feel grateful for this bit of function when it dont get us far. But think of theeee worlds strongest man.... all that effort for one day on tv. you will get benefit from being more independant.

i wish you all the best, i get a feeling your gonna make it, but i dont know your body so cant give you answers i am sorry.
Just never beat yaself up if things dont work out.

Have fun trying
.

[Jake731]

Thanks! I am currently going to physical therapy 3 times per week. I will never give up because i feel like i am so close!

[Ginny]

You've made fabulous progress and I hope it continues. Alas, none of us really knows how far we will progress and if we will still have effects of our SCI. My rehab doctor told me that many people can recover to a great degree, but that I should expect residual affects from the injury. He meant that I won't be completely normal. However, I just came in from a walk around the neighborhood with hiking poles. I drive and go to work. I can go see my friends and do fun things. There are lots of things I can't do yet but will continue working towards them.

I'm glad you're still seeing a physio. Keep it up. Your youth will work in your favor and the fact that you've had such good recover so far!

[edlee]

As said above,,, keep working at it,,,,,, but ,,, remember to have some fun, too. Make sure you take the time to enjoy life,, no matter what your walking speed happens to be at the time.

I wish you much luck, Jake.
ed

[Aparr]

Wow! How fantastic your recovery has been thus far. You can be proud of your recovery as well as your individual strength, commitment and endurance!

What you're feeling and the questions you have are quite normal with a new injury. It can be very frustrating searching for the answers nobody has or can give. I know when I was newly injuried nobody could give me answers I was searching for and all I wanted was a crystal ball to look into the future to get my answers.

Please know that we can relate, each in our own way, to not having the answers wanted. Also, I can only imagine how hard it must be being injured at 16. I dont know how i would have reacted. We are hear to listen and support you in any way needed. Keep striving toward your goals! Take Care!

[Tetracyclone]

 MTB John, on 21 September 2011 - 10:47 AM, said:

Lucky Bugger..

Are you continueing with any kind of Physio?
It's important to makes sure the smaller but no less important muscles (like the ones around the side of your hips - i forget their names) are being recruited properly otherwise you may have issues down the road.

Try to get as normal a gait pattern as you can and just keep looking for improvements..

Just keep at it and hope for the best.

Good luck..

I have found dancing to be superb phisio for the smaller balancing muscles of the hips and feet. Put on music you love and move! Shifting weight from one foot to another even those of us who cannot actually pick up those feet, this helps greatly with coordination and balanced gait. The joy of music will cement new learnings into your brain. I do this inside the safety of my walker, without holding on.

i do this often and even if my walk never gets free of the walker, you know what? I'm just thrilled to be a better dancer!

[Parachute]

Hi Jake731

Your recovery is great. You are only 16 so have plenty more growing. I wish that you get stronger and are back up and running very soon. Keep up the training and you will get much better.

You will have to wait and find out if you will make a full recovery. Having said that, do you have any bowel or bladder problems? Goodluck with everything.


Parachute

[Jake731]

I am currently taking a medicine for bladder urgency. Its like Detrol. But no bowel problems. The Detrol regulates my bladder so its normal now. I got the great news yesterday in PT that they want to cut down my AFO to make it smaller! My therapist doesnt think I will need a brace for much longer than a month.

[Parachute]

 Jake731, on 15 October 2011 - 08:00 PM, said:

I am currently taking a medicine for bladder urgency. Its like Detrol. But no bowel problems. The Detrol regulates my bladder so its normal now. I got the great news yesterday in PT that they want to cut down my AFO to make it smaller! My therapist doesnt think I will need a brace for much longer than a month.

Hi Jake

Please let us all know when you get your brace off and how you are without it. Most of all, let us know of the progress that you make once the brace is off.


Parachute

[irish]

Hey Dude, rock on, you're cured. Keep up the exercise and build strength. Congratulations