How Incomplete are you now?

[Andy]

know that feeling Lucky ...

[Gary Anderson]

Yep! I thank God every morning that when I waken up I feel strong and can get through the day. Fingers crossed.

[mttb14]

John wakes up most mornings and the aches and pains haven't started so he convinces himself that he is cured.  The he moves or does something and it all starts again, it is a two second illusion, but he still keeps having that illusion.

If only thought and wishes could be powerful enough to work.

We're in Court on Monday for a case management conference, with a load of people who just haven't got a clue, I live with him day in and day out, but even I probably have only a small idea of what it really feels like having an SCI, because at the end of the day, I can still do all the things, he can't.

Maria

[cate]

Hi
|New as I am, little confused by your nerves recharging. as I understand if the sci and nerve damage is left untreated  and you deterate,  the longer it is not treated the less chance of the nerves regenerating, this is what appears to have happened in my daughters case, and cored as not changed at all since her op, so there appears to be a little likelyhood of improvement.   I think I have that right
Cate

[MamaDiva]

I just wanted to ask Cate, is your daughter getting any type of physical therapy? In some cases it does help. I really liked aqua therapy. Good luck......... MamaDiva

[Gary Anderson]

According to info I was given at the time of my accident 19 yeras ago, nerves can regenerate for anything up 18 months after a trauma. As happened in my own case. With the correct therapy, eg, functional electrical, you can inject life into parts that were otherwise "dead." In my own personal case - which is a nerve injury - I find that massage and other means such as electrical therapy really do help as it encourages other parts to take over from the damaged parts.

If your daughter has nerve pain then she has all my sympathy as I find it sweeps over me in waves and is almost constant. I am limited to the medication I can take as working as an anaesthetist I cannot afford to fall asleep. The patient is supposed to do that.

[Andy]

From what I recall of my and other incomplete recoveries is that the time window for making the most of potential recovery is up to 2 years post trauma to cord.  Its also very true that the major recovery/improvement occurs in the first 4-6 months allowing for any prolonged periods of bed rest.  I was also told that the messages sent from brain to muscles can find alternate pathways to use with the aid of physiotherapy and excercise too

If the spninal cord has been comprimised completely theres still little or no hope of regeneration but therapies help circulation, muscle range etc

Andy

[Claire Lewis]

Whilst I'm on a role tonight and trying to bump up my postings to make me a junior member rather than newbie thought I'd throw into the equation that some people can have spinal shock up to 12  months post injury (some as long as 2 yrs apparently!)

I knew a chap from back up who on his first course was a chair user but then I remember seeing him 18months later (a good 2yrs post injury) at the back up ball and he was walking with a stick.

made me spill my bucks fizz and everything ............. Dr's put it down to spinal shock!

[Jilly]

Isnt it amazing what sheer determination can do as well. Its good to hear success stories.

Shame you spilled your drink though....but I bet it was worth it!

[Gary Anderson]

I can beat that Clare.

I was injured 19 years ago and was told that as it was a cauda equina injury my only means of getting around would be a wheelchair. I had not lost feeling/sensation just the ability to make my legs walk. As if my brain had forgotten how.

I was always exercising and pulling myself out my chair - instead of buying a powered reachable one!  Anyroads, about 10 years ago (I think see past forum for the story), I was in USA and met the chap who was treating Christopher Reeve. This guy ran a clinic based on FES and getting the forgotten parts of the body to work.

To cut a long story short, I had this treatment, paid money to a private rehab clinic in England when I returned, continued withe exercising and have not looked back. I now walk with 2 sticks - although on a good day can get around on one.

WHilst I dont disbelieve the original doctors in the spinal unit - as a doctor myself - I think it truly is a case of they just do not know. Unlike USA, here in the UK we do not have specialist spinal surgeons - we have orthopaedic surgeons who have chose to operate in the spinal field - different thing. In USA they have neurosurgeons who deal with everything dealing with bones and they have ones who deal with everything connected with spines.

Anyroads, just thought I would share my side of the story that despite a bleak initial outlook with hard work and determination - I achieved my goal. I may not walk like my other able bodied mates - but at least I am getting around independently. Bieng chairbound was not something I adapted to easily.

As a doctor, I think when serious injuries happen it is down to (a) your luck on the day (b) your own determination to stick at a rehab programme and (c) your attitude. You can either sink or swim and in my case I chose to swim.

[Jilly]

Yep...sheer guts and determination.
And a little bit of help from modern technology, and medical knowledge.

 In your case Gary perhaps a teeny weeny bit of scottish stubborness helped as well!

[Gary Anderson]

Hoots mon you are right there Jilly. I have that in abundance. Dont let the B******* grind you down because then the B******* have won.

[Jilly]

I have another such story.

I was very recently contacted by a member of Apparylized who had disappeared  months and months ago. Im not exactly sure how long ago he was injured, but I think roughly 2 years ish. His injury was T12 - L1  it must have been incomplete because after much hard work he is now WALKING again with two crutches!! Yay!!!

[Andy]

after speaking to medical pros, its now usualy normal for spinal shock to mask true extent of injury for 6-8 weeks but it has been heard of in some rarer cases for it to last 18 months to 2 years

[Gary Anderson]

No 2 injuries are the same and no 2 people are the same. My case was hugely different from an SCI my brain had just "forgotten" how to walk and had to be retrained. It is the nerves into my legs that are damaged my spinal cord is wholly intact.

[cate]

Hi Mama Diva and all
My daughter now is one her own excise regime, gym about 2-4 times a week, on a programme they have worked out for her, but no  cardio vascula work out, we also try to go swimming somestime. but she is still working, her job is an hair technician,  she works with a tilted stool, so she is not standing as such, and this has worked reasonable well,  she is also studying law, as  how long she can do her normal job remains to be seen,  she was original teaching this at colleges around the uk,  that  was when she had a car accident, the  spinal injries was only found, after  mess up on acl repair, from another accident, she had  various problems  also foot drop, so she was sent to Stanmore,  they quickly realised something else was going on, , The ttests seem to go dowm the MS route, I new that as  I had nursed my motherin law who had suffered from this.they put the knee injurie on hold and said the spinal cord was urgent and dealt with that, very quickly,  and she had physio at our local hospital for a while  and then later with her knee,  but now she is on her own, the spinal op was about 6 years ago.  they also followed up with various nerve test and it is the motor side wh9ich is the problem,  she does not take any drugs,reguarly she is fourtunate in some ways  as the pain is very numbing, but she also has been left with Brown sequard and also lymphodeme, I  cannot explain all the symptons too well, as she just gets on with things, but  with work and lviing on her own she gets very tired and the body aches, is best I can explain. It could have been found much early, if they had listen to her at the doctors about the numness and the falling down and dropping things suddenly, I can see it now, But so easy to wise after the event thanks for listnening asking about her,  I am not very good with symptons, but then I do not think one can fell anothers pain,  we might think we do do but I am sure we cannot have a real insight to it.
Regards to all cate

[Millard]

my sensory wiring is really weird now, I can feel touch just about everywhere, but below my injury can't tell hot or cold.  Also my weker side feels pain more than my stronger side where pain is just like touch, I think that's the Brown-Séquard syndrome part of my injury

I am a C5-C6 tetraplegic but have the same sensations described by Andy... 40 years post injury.

Millard

[kate]

Gaz

Perhaps my 2cm is wrong it could be 2mm - I cannot remember now after 18 years. However, having lunch with me is a neurosurgeon and he gives me this reply:-

"Nerve cells or neurons regenerate differently in different parts of the nervous system.  In the central nervous system (CNS), your brain and spinal cord, they typically do not regenerate.  In the peripheral nervous system they are able to regenerate.  This is why spinal cord injuries leave people paralyzed for life, whereas a severed hand or foot can be re-attached and regain a great deal of function after several months.  Peripheral nerves
are known to grow along the path of the severed nerves.  The supporting
cells (Schwaan cells) of the peripheral nerves are also known to release
substances called growth factors that let the growing nerve cells continue
to the appropriate location an support its regrowth."

You have to remember that my spinal cord is completely undamaged it is NOT the nerves is the cord but the peripheral nerves that are damaged so they DO regrow to a certain extent.

How absolutely fascinating that the consultant you were having lunch with quoted, word for word, a post from a different website.

http://www.madsci.org/posts/archives/2000-12/977821242.Ns.r.html

[kate]

With regards to spinal cord injury, there is little or no regeneration after the initial trauma. Infact, the human body, after an SCI, produces enzymes that attack the injury site, so inducing further damage. The spinal cord, itself, will 'shrink', thus causing even more trauma than initially induced. The final extent of the injury will only be known after 12 months post and it can be as long as two years post before a prognosis will be known.

I'm surprised that a person with as little knowledge of the medical field is allowed to practice even as an anesthetist.

[cate]

Kate
Your views are correct in many ways, but as already mentioned  sci is the same as people we do vary.  I will ask  are you having a particular problem with the site or writers. we aim to be friendly chatty helpful and sometimes amusing,  You seem to be very barbed, or am l misreading you.  If so my apologize's.
Cate

[Gary Anderson]

Kate

How very belittling I found your post.

I'm surprised that a person with as little knowledge of the medical field is allowed to practice even as an anesthetist.

Would you like me to tell you how long I studied - and indeed still do study - in order to stay in the medical profession? I am NOT a spinal anaesthetist, I have NEVER led anyone to believe that I was. I just happen to be an ordinary  doctor suffering from a spinal nerve injury.

The consultant I was having lunch with provided me with a copy of the article from the website to help out the folk on the forum. I NEVER said that he ACTUALLY wrote the thing himself. Is it really relevant? Obviously, the information is there for anyone to access - you did, I did too to print the article my friend referred to.

As for your information, whilst correct in some ways, you are WRONG in others.

I suffer from a nerve injury and my nerves have regenerated over the passage of time with a little help from electrical therapy to stimulate them. Why do you think spinally injured people get electrical treatment at rehab? It is not just so that the physios can have something to do. The electrical treatment can help by sending messages through undamaged parts of the body.

You MUST remember that everyone is different and whilst a severed spinal cord cannot regenerate damaged nerves and cells can. That is proven fact.

If you have a problem with me please tell me but please do not belittle my job. I had to train as a doctor to become an anaesthetist and indeed only became one as a result of my initial injury. There are doctors who specialist in spinal or orthopaedicts but I have not specialised in anything - I just happen to be an ordinary doctor with a spinal nerve injury - no more no less.

I have been dealt with in a rougher manner on here before and survived so I am sure I can survive whatever is troubling you. I would have thought even someone like you would know that no two SCI patients are every the same - two paraplegics and two quads will have entirely different capabilities and yet be injured at the same spot.

I am just back from my spinal consultant and I told him about your post. He says you are wrong - at the point where a patient is admitted to a spinal unit the doctors are accurate in their prognosis 98% of the time. So, if you fall into the 2% count yourself very lucky indeed.

Never at any time is the information given here meant to take the place of your own doctor or OT or PT. If you are having a problem with the site - then tell us what it is. If your problem is with the writers of the forum, then again, tell us. At the end of the day we are ordinary mortals doing an ordinary job but trying to provide a forum that gives a wealth of experience and help to others.

[Apparelyzed]

Some people in life make icecream.

Some people in life eat icecream.

Some people in life just sit and complain that icecream makes them fat!

Whoooosh, was that the sound of my post going over peoples heads!

Simon

[Gary Anderson]

 

10/10 Simon.

I just spotted this signature at the bottom of the original post

I'm trying to see things from your point of view, but I can't get my head that far up my arse

.

DITTO!!

[Jilly]

I havent been here for a couple of days and look what Ive missed!!!

Wooohooo!!! Go Simon!!! Heehee!

Kate...why are you here?? To nitpick? These people are my friends.. Dont piss them off!

[rezref]

Gary,

Is it true that after a fall like I experienced, which damaged my spinal cord, the symptoms may not appear immediately after the accident.  Case in point, I hurt myself after a accident in a sporting event (fell backwards and hit head and neck) and I did not feel anything weird until about a month later.  Of course, I had the big head ache after the fall.  The tingling feel in my fingers, feeling off balance and pain in my back started to appear about 4-5 weeks after the accident. Is this true and is there research out there to support this?

Just curious if there is any info out there regarding this because I am sure I read somewhere about spinal shock.

thanks