How Incomplete are you now?

[Gary Anderson]

I know there are not a great many of us out there on the boards, however, it is worth a try.

How incomplete are you now since you have come years down the line from injury?

I am 18 years and was told that nerves grow 2cm per month so after 2 years that would be what I would be for all time. Not true. From the beginning I could move/feel my legs below the knees - above the knees was a bit patchy. So, after 2 years, I thought that is that.

Here's the surprise. Movement/sensation continued and one day in the house by myself I required something from a worktop, so I hauled myself up and to my amazement found that my legs were steady as I stood.

I had a course of physio and was amazed to find that after 16 years, I was able to re-learn how to walk without callipers or any false aid other than 2 sticks. Now, 2 years from that, I can get around nae bother which makes my job easier.

I say "nae bother" tongue in cheek as since my accidnet in January when I broke my legs, I have found that they trouble me more so I tend to use the chair more often.

Anyone else experienced recovery after years?

[Andy]

my major recovery was about finished by a year post injury, but strength and stamina have improved greatly over the years.  I'm sure my better arm is loads better too because of everthing I do with it 

[Gary Anderson]

I know what you mean. My good arm is like Popeye's, whilst I have this weaker job on the other side. However, I am trying to build it up with exercise. It looks really puny when in a short sleeved shirt. Still, I guess I was lucky that I did not break my neck - or lose my life. I'd have hated to miss these boards.

[Gazrobs]

Hmmm, I'm slightly confused as I thought (at least in SCI) that the nerves didn't regrow like the brains so that's why it's so tough & all this research is going on like stem cells.

Also 2cm sounds a lot (wouldn't they be bigger than you after 2yrs:-))

Like Andy my major recovery both funtionally & feeling stopped around a year but I'm a lot stronger etc & continue to be able to use what I've got more & more & I'm six years post.

Gaz

[Gary Anderson]

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.

[Andy]

spinal nerves can't regenerate or regrow, peripheral nerves can at 2mm a year, so say for example you badly burn skin on arm, after a few years feeling lost at time of injury may gradually return

[Gary Anderson]

Thanks Andy. Never could tell the difference in my centimetres and milimetres.

I knew the peripheral nerves did regrow because my neuro doctor has bored me over the last 18 years telling me that it is because of that I found myself able to re-learn how to walk. Dont know if I will ever walk like an able bodied person again but if I can get around like now I'll be happy.

[mttb14]

Hi Gary,

I remember reading that you wanted to be a surgeon prior to your accident and due to being able to sit down you became an anesthetist.  They say god works in strange ways, but if you have trouble with mm and cm maybe god did not want you cutting off 2 cm when you were only supposed to cut off 2 mm.  (Said in jest, so don't take it the wrong way).

John's incomplete injury has caused more problems and has got worse over the past 8 years.

He bent his head to far back whilst lifting 60 lb boards above his head in work, and whilst trying to balance 60 lb and trying to push up further he caused his discs to push into his spinal cord.

Over time his symptoms have become worse and he had an op to alleviate pressure on the cord, but the cord was already flattened on the left at C5/6, but they had been trying to avoid surgery.  They only operated 4 years after the accident due to the fact that he was really struggling to walk, falling over and had very little pin prick sensation, especially in his feet.

I don't know if this makes any sense to any of you, but it seems to us that the more pain John is in, the less sensation he has, so in the winter or if he has tried to carry out a task which has caused inflammation around the disc area C5/6, the discs seem to press more onto the cord and he experiences worse spasms, worse spasticity, more stumbling and falling and his tendons in elbows and knees become really tight and he cannot straighten his legs and arms and the pain is absolute agony.  It is really hard to explain to people, as they just don't seem to understand that tendons can cause so much pain, even doctors.

He can do less now and is in far more pain now, the doctors have said that it is likely to continue to get progressively worse, but he still has power and has physio and hydro therapy, and he tries to work through the pain barrier, but he also has to take massive amounts of tablets just to get through the day.  He hates taking them, but the pain really is unbearable without them, and he has tried to go without some of the tablets for a few days, but he can hardly move, and he already has a high pain barrier.

Maria

[Gary Anderson]

Maria

LOL and I am still laughing at me as a surgeon cutting off too much!

I am a bit like John, I hate taking anything for pain, headaches or suchlike.

Poor John. You just never think that something will happen after such a simple task. Reminds me of someone I know who broke his neck and is now in a home after slipping on the grass. He forgot he has slippers on and the grass was wet.

In the space of a nanosecond, your life is changed forever.

[discostu13]

I am only 1 day shy of being exactly 9 months post injury. I saw a large improvement in the first few months, but it has slowed significantly. I have not noticed any improvement in some time now. At first I noticed the paralyized area "shrinking". I have recovered quite a bit from where I started off, even though it may not seem like much... everylittle bit is HUGE. My neurosurgeon said most people recover sensation in the first year... however in rare cases some have recovered it years and years down the road..

I remain optimistic

[Gary Anderson]

Always stay optimistic. I know folks who have improved in movement and sensation years down the line. It may not seem much to them but you, the sufferer, it is a great deal.

I'll share this with you - a spinal injury consultant I know says that in essence, SCI injuries are a minefield that even THEY do not understand so they remain cautiously optimistic and paint the blackest of pictures because really they do not know. So, rather than get your hopes up, they keep them down.

Strange but true I am afraid.

[mttb14]

Hi Gary,

Glad you saw the funny side of my posting, they say men always over exagerate the size of things!!!!!!! lol
but your 2 cm instead of 2 mm would make everything 10 times bigger as there is 10 mm in 1 cm.  Don't take up DIY or your measurements will mean anything you make won't fit in the house.

We have one doctor (the defendants) who is trying to say that John merely sprained his neck and everything else would have happened due to spondulitus, and all other doctors saying that the neck injury caused the cord to become flattened.  I agree that it really is a mind field, one neuro-surgeon who John saw as part of his claim said John walked with a normal gait, I don't know who he was looking at but it definately wasn't John.  Every other doctor, and there have been many due to the potential value of the claim has said he has an awkward ataxic, spastic gait.  I wish doctors would speak in English, I will have a medical degree by the time this has finished.  The defendants orthopaedic doctor said the Rhomberg's test was negative, but when I looked it up, it was definately positive as the doctor had to put his hands out to catch John as he was slowly falling backwards, with his eyes closed John had no concept of his body leaning and falling backwards.

Most of the co-ordination tests were incomplete, after I have read the results and looked them up, but who will the judge believe?  I hate doctor's who do not write the truth, but write what they know the instructing solicitors want to hear.  They are playing with people's lives and a very costly play it can turn out to be for the person who has had the injury.  Incomplete is just as confusing to them as it is to us.

When we were out the other day, John was in his wheelchair, and at one point he stood up to stretch his legs, the people around us just stared, I think they thought a miracle had happened.  It was like, oh my god, that man can walk.

Maria.

[Gary Anderson]

Me! I never exaggerate.

I know what you mean, a few months ago I was at a conference in Edinburgh and was in my chair, during the evening, I stood up to get a newspaper and someone actually thought that a miracle had been performed. For the past 18 years I have had movement/sensation in my legs my "brain" just forgot to redirect the messages to make me walk.

I have been laughing all day at having nerves grow at 2cm per month. It was, as you guessed, 2mm. Now, after 18 years, I have completed all the regeneration I am going to get. Yet, I have amazed EVERYONE by walking 18 years after my initial injury.

Unfortunately, a bit like John, cauda equina syndrome is very rare whcih does not help. There is forum similar to this which is supposed to give help. However, I tried that - got nowhere with my postings or the posters - so Joined Moose's site instead.

I can honestly say that I have amassed a great knowledge of quads/paras and it was especially helpful when my nephew was alive.

So, keep up the good work.

[discostu13]

Always stay optimistic. I know folks who have improved in movement and sensation years down the line. It may not seem much to them but you, the sufferer, it is a great deal.

I'll share this with you - a spinal injury consultant I know says that in essence, SCI injuries are a minefield that even THEY do not understand so they remain cautiously optimistic and paint the blackest of pictures because really they do not know. So, rather than get your hopes up, they keep them down.

Strange but true I am afraid.

I have know of one perosn who was a complete quad, and like 5 or 6 years after her accident she had a HUGE improvement in sensation. It came as a shock not only to her but her doctors. I was very interested and surprised to here about it.

[Tinbasher]

Hi I am new on the board. 21 years post injury, T12 /L1 Incomplete depending on who you ask

I am never really sure if I am less complete now or just better at being paralysed  Last year suddenly after 20 years and no communication with my bladder I started to wake in in the morning with that old familiar bursting to pee feeling!

The down side was that along with this I totally lost the ability to empty my bladder without a catheter so I am now totally cath dependant when I used to be able to at least pee a bit by straining. 

Tom

[discostu13]

Hi I am new on the board. 21 years post injury, T12 /L1 Incomplete depending on who you ask

I am never really sure if I am less complete now or just better at being paralysed  Last year suddenly after 20 years and no communication with my bladder I started to wake in in the morning with that old familiar bursting to pee feeling!

The down side was that along with this I totally lost the ability to empty my bladder without a catheter so I am now totally cath dependant when I used to be able to at least pee a bit by straining. 

Tom

I am an L-1 incomplete and I have noticed that nearly forgotten feeling on occasion as well. I have actually been awakened by it on occasion, however much like you I completely dependant on catheters. And that occasional sensation is exactly that...occasional. FOr some reason I do not experiece it frequently, and it is only in the morning. Weird, but progres is progress

[Jilly]

Hi Gary,

I remember reading that you wanted to be a surgeon prior to your accident and due to being able to sit down you became an anesthetist.  They say god works in strange ways, but if you have trouble with mm and cm maybe god did not want you cutting off 2 cm when you were only supposed to cut off 2 mm. 

Lol!!!!.....NICE Maria

[Tinbasher]

I only get it in the mornings as well never in the day its purely morning thing.
One thing being incomplete does is make you realise just how complicated our bodies are!

Tom

[discostu13]

I only get it in the mornings as well never in the day its purely morning thing.
One thing being incomplete does is make you realise just how complicated our bodies are!

Tom

That is for sure.... I have certainly learned an awfully lot as a result of my injury... And I continue to learn more all the time

[Apparelyzed]

I'm sensory incomplete, meaning I can still feel touch.

The only thing which has changed with me over the years is appreciation of pain.

When I first had my injury, the consultant used to use me as his test subject, and show how to do the pin prick test. About five years later, he did the same test, but got a bit carried away , and found my pain sensors had returned to a lower level than my injury.

Not exactly the return I was looking for, but it has it's uses. The return of pain sensors is only for light pain, and ends around my abdomen, but I can still feel deep pain all over. So luckily, I can still have injections in my leg, feel the needle, but not the pain.

Simon

[Andy]

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

[Gary Anderson]

I never knew before there were so many types of SCI syndromes.

[mttb14]

With your medical background and knowledge I find it very refreshing that openly seem amazed and surprised when you discover something new.

All the Doctor's John has seen over the past 8 years privately in connection with his claim come up with different answers to the same problem, but none of them will admit that certain things are a surprise to them or that with an incomplete SCI there are very confusing issues and differing symptoms.  The only Dr who has been consistent with his answers and explainations has been Dr Harry Baker who is a spinal consultant, the others are orthapaedic, etc.

Maria

[Gary Anderson]

Maria

Perhaps because my surgery career was cut so short makes me the way I am. I love learning new things and have amassed a huge amount of knowledge since joining this forum. All because I was at a loose end one day, saw a posting and knew that I could help. Here I am and here I stay.

I reckon it would do some doctors/spinal consultants good to join here! Perhaps they could learn something. When Alan was alive and had his accident I got more help from this and Simon's site than I did from any medical professional. Bascially, in short, the answer is they do not know with spinal injuries - so they guess and paint the blackest picture they can.

An example is a girl I know of 16 who was in hospital with Alan. Her folks were told she would never do anything. Yet 7.5 short months later she can move her arms and feed herself, brush her teeth, write and work a laptop. Yet the doctors will only say "we are amazed."

The power of an individual is very intense and it depends on the fight you have. I am friendly with a neurologicial consultant who is astouned at the vast info available on these forums.

I do not have a spinal cord injury - my injury was nerves - yet I have learned so much.

All I cay say is keep fighting and plodding on. The problem is that our surgeons for the spine are mostly orothopaedic as opposed to USA where they have orthopaedic, neurosurgeons (who deal with the brain) and also actual qualified spinal surgeons. We do not have specialist spinal surgeons - they are neurosurgeons in disguise! I should not say that but it is true.

Me - I desperately wanted to be a surgeon but cannot - now, I am an anaesthetist with a vast knowledge of spines, etc. Which can help when dealing with spinal patients in the theatre!

I shall always miss the career I could have had. However, what I do at the moment I enjoy. To hold someones' life in your hands is a great thing. Perhaps had I progressed to a surgeon, I would have specialised in spines. Who knows.

Love to you and John.

[Lucky]

I'm still as strong as an ox.......

Then I wake up.