5 replies to this topic

[Alex_J]

Hi my name is Alex and I am 25.

When I was a kid I had a trampoline accident and sprung about 20 foot in to the air and crashed to the floor. Within minutes of hitting the floor I was numb in my legs with a sort of tingling.

I was rushed to hospital and after various tests was told I had damaged my spine, I had spinal concussion (think its also called spinal shock but not 100% sure). The main swelling that compressed my spinal chord was as L1. Anyway after a few months I made a very good recovery and was back to doing what I loved with slight numbness in my feet / lower legs but nothing I was bothered by.

About 5 years ago I was involved in a minor car crash, I got up and walked away but then started to suffer with numbness and tingling to a much bigger extent in my legs. I ended up calling a friend and they got an ambulance, strapped to a spinal board I made my way to hospital. They did an x-ray but said all was fine, I stumbled out the hospital and got on with life.

6 weeks later I was at my GP's moaning about back pain and the tingling and numbness being worse. I was sent to a Physio who said I had a twisted rib cage and after about 12 weeks of Physio she discharged me as my rib cage was back inline.

Then to top it all off I had an opertaion and got CIDP a disorder that makes the body attack its own nerves and starts to kill them. After 21 weeks in hospital I was discharged but had more damage to the weakened bit of my spine so slightly more numbness and tingling.

Anyway since then I have been getting more and more numbness / weakness in my legs and really bad back pain unless I sit with pillows wedged behind me.

MRI's show scar tissue from T10 to L3 with the origional injury being at L1. They say not much can be done and just to live with it. Although I have good movement I have very poor balance and feeling in my legs and the pain in my back gets very bad on sittiaing on and against firm surfaces. I can and do walk but cannot manage more than 50 to 75 metres. The balance and numbness is the main problem for me as I tend to bang and bump my legs and feet and not realise it or get a stone in my shoe. I fall alot and as a result have had many broken wrists leaving them quite weak.

6 months ago my OT arranged for me to get AFO leg splints again to make me more stable on my feet. They work in the sense I do no go over on my ankles any more and do not dragg my feet but they do not help the numbness / tingling (I never expected they would as I was told it was to imporve balance and stability only).

Anyway my OT is coming on Friday (tomorrow) with a wheelchair, something I never imagined myself needing. It's a bog standard NHS 8L (what ever one of thoses is).

Does anyone know what the 8L is?

Also does anyone have experience of an injury like mine which happened years ago, was never a major problem but due to a bit of bad luck, more injuries and a lump of scar tissue is now causing no end of issues. I cannot walk more then 75m without sever pain and the numbness / tingling is always there. I have pritty good movement just look a bit unsteady. My reflex's in my knees are poor and I have no reflex in either foot anymore.

I have been told they can't do anything to make it better and it may continue to get worse as scar tissue will continue to grow and form in my bad (don't quite understand why). I am very lucky my injury has not caused more issues and I do feel lucky I can still do some walking (like lounge to kitchen to get a drink) but I am also feeling very scared and confused.

Any advise would be most appreciated

[Kwag_Myers]

While I can't relate to your injury, I can say that those of us with CES are all too familiar with limited walking, balance issues, and weakness in the legs. I think you'll be surprised at how much your mobility improves when you start using a wheel chair.

And welcome to the forum.

[doublelibra]

Hi, Alex-

My injury is at C 6-7, so my injury is different. I would like to welcome you, though. The group here is good for info and support, so I hope you'll stick around.

Doublelibra

[Alex_J]

Thanks for the replies, its nice to know people understand.

I am anxious about the wheelchair turning up tomorrow with the OT but I guess I will just have to wait and see.

[cate]

Hi Alex. My daughter is c5-c6. her injury was not discovered for a few years, we think from a car accident. she had also damaged her knee ACL. which was not repair correctly. She then started falling down, had the tingling and burning senseation. dropping things, and also foot drop. swelling in the legs, which GP said was water retention, gave water tablets and that was that. Well conti ued top get worse. I thought the falling down was due to the knee injury local hospital did more test and nerve test sent her to Stanmore Royal Othorpedic Hospital, where they thought maybe she had MS. did a scan, called her back in straight away need to operate urgently, spinal cord completely flaten she has rods in the neck and bone grafted from the hip, She is able to walk with crutches and drive, llives on her own, so she is one of the ''lucky'' ones. but she has BSS, and lymphodema, They feel that they have managed to slow things down so she is not in a wheel chair, and I just hope she stays as she is not get any worse, The whole right hand side of body works much slower and hands curls, and balance is not good, and in the dark or twilight it is worse. Also 3 ops on her knee, ligaments all replaced, Not been a great sucess on the knee, but will not have any more ops. The screws came out the first time.
Seems that many of your problems are ,similar. She works part time, and is also study for a degree.
Cate.

[dom]

hi alex,i too have L1 and am a walker,i have had it since 2001 after a fall from height,i sometimes do things i should'nt do -like lift furniture or bags of hardcore i don't bend though as this aches my back,i have some numbness in my legs what i would like to ask is it dangerous to do physical activity now,especially lifting