4 replies to this topic

[Nuna]

hi, hope your all doing well, not been on for a while. Remeber ciaran my son, 5 months post injury and i am not heartbroken any more. he is doing really well and will be ready to leave hos in about 6 weeks. last week he started to move, very very slightly one toe on his right foot, then he could move three of them 4 days later. nothing on his left side though. he can feel when he wants a wee but can not control it, the docs say it is nothing and will not mean he will walk, does anyone have any stories how their recovery happened. is this the start of anything or what? i have got used to him being just perfect in a chair, you were all right, he is just as lovely as he ever was. thanks for bringing me out of my dark place, you are all very kind people who spend time to reassure others, so thanks again. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[kewlcatkez]

Nuna, on Mar 17 2008, 11:50 PM, said:

hi, hope your all doing well, not been on for a while. Remeber ciaran my son, 5 months post injury and i am not heartbroken any more. he is doing really well and will be ready to leave hos in about 6 weeks. last week he started to move, very very slightly one toe on his right foot, then he could move three of them 4 days later. nothing on his left side though. he can feel when he wants a wee but can not control it, the docs say it is nothing and will not mean he will walk, does anyone have any stories how their recovery happened. is this the start of anything or what? i have got used to him being just perfect in a chair, you were all right, he is just as lovely as he ever was. thanks for bringing me out of my dark place, you are all very kind people who spend time to reassure others, so thanks again. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hello Nuna,

I am so happy to read that you are feeling more positive about your son's future, and that it is not dependent entirely on if he gets out of his chair , or not.

In answer to your question, it is very difficult to predict what may happen. You see the return of movement which he is experiencing may be due to the 'swelling' reducing so that the ture completesness ( or incompleteness ) of his injury is now becoming apparent. You see, the reason as to why people suddenly acquire these movements, spasms whatever after a few weeks or months following SCI -(In terms of Spasms- some which may taper off ( in some) after a few months of years), is due to the fact that initially there is no reflex action, and so no 'activity' neurologically below the level of lesion. This is during 'spinal shock' -where the impulses are flooded.

As the spinal shock lessens, the reflexes return in a very jerky and twitching fashion - leading to spontaenous contractions of the muscles below lesion. Sometimes, these are mistaken for purposeful movement. Due to the misconnection between the Brain and spinal cord, these spasms, tightenings, pains, cramps and 'electricity' are of course involuntary/unintentional, purposeful movement when present -at first can be unpredictable. The movement that Ciaran has sounds to be voluntary and as such is a positive start. Only time will tell if it leads to anything else.

My advice to you and tour son is to work at living life as it is now, learn to be independent and self sufficient as far as possible, plus do as much therapy as is possible ( dependent upon physical and mental reserves etc) and what will be will be. Unfortunately, no two injuries/situations are the same even at the same level. No dr can tell you what to expect because of that. There is hope, however do not be s preoccupied by it that you miss living now..( or he does). Just MY opinion...

I hope for the best possible outcome for him,

Take care,

K

Edited by kewlcatkez, 18 March 2008 - 11:07 AM.

[Joed]

Hi Nuna....

I bugged my neurosurgeon constantly about the little twitches and movements I was getting. He told me that it really didn't mean a whole lot since it was involuntary movement. About two years later, I can get some small voluntary movement in my foot, but nothing functional. But I use those involuntary muscle contractions to try and boost my own small voluntary movements.

I still get the muscle contractions all the time. Sometimes I can elicit movement by pressing on a certain spot along my shin bone. It's all very fascinating to me. I enjoy looking at my foot move, and at some level I can sense it when it happens...it's a pleasant feeling...kinda like a good stretch in the morning. I figure these involuntary movements are at least stimulating my muscles/blood flow occasionally.

Perhaps this is something that Ciaran could build upon in the future, but it would be most likely that these movements are involuntary. I hope I'm wrong though!

Having said that, I will add....always remain hopeful. Try and ground yourself in the present reality, but hope always.

Blessings to you and Ciaran....

[nomis]

Great news Nuna
He's still young so has the best of opportunities for improving. Any little gain is a gain.
Good to find you in better spirits and I hope the Ciaran continues to bring you much happiness.

Edited by nomis, 18 March 2008 - 09:40 AM.

[Kwag_Myers]

Nuna, on Mar 17 2008, 07:50 PM, said:

he can feel when he wants a wee but can not control it, the docs say it is nothing and will not mean he will walk, does anyone have any stories how their recovery happened. is this the start of anything or what?

Man, I wish I could tell when I had to wee. I can't tell you how many times I've cath'd just a few ounces. [/rant]

Anyway, the best advice I can give is to take it as it comes, not to get too caught up in the recovery process. Take Motor for example; three years before he was able to even start walking. Even then, it doesn't come easy.

Ciaran's injury is a little higher than mine, so this may take longer - I'm seven months post and am just now starting to get feeling back in my toes. I know it's hard, but you just have to wait and see what happens. And be greatful for what Ciaran is able to do.