Friday, 17 February 2012



A Spinal Cord Injury (SCI) refers to an injury to the spinal cord that is caused by trauma instead of disease.  Depending on where the spinal cord and nerve roots are damaged, the symptoms vary widely, from pain to paralysis to incontinence.  Spinal cord injuries are described at various levels of ‘incomplete’ which can vary from having no effect on the patient to a ‘complete’ injury which means a total loss of function.  

Treatment of spinal cord injuries starts with restraining the spine and controlling inflammation to prevent further damage.  The actual treatment can vary widely depending on the location and extent of the injury.  In many cases, spinal cord injuries require substantial physical therapy and rehabilitation, especially if the patients injury interferes with activities of daily life.

Spinal cord injuries have many causes, but are typically associated with major trauma from motor vehicle accidents, falls, sports injuries and violence!  Research into treatments for spinal cord injuries includes controlled hypothermia and stem cells, though many treatments have not been studied thoroughly and very little new research has been implemented in standard care.

The American Spinal Injury Association (ASIA) first published an international classification of spinal cord injury in 1982, called the ‘International standards for Neurological and Functional Classification of Spinal Cord Injury.  Now in its 6th edition the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) is still widely used to document sensory and motor impairments following SCI.  It is based on neurological responses, touch and pinprick sensations tested in each dermatome, and strength of ten key muscles on each side of the body, including hip flexion (L2), shoulder shrug (C4), elbow flexion (C5), wrist extension (C6) and elbow extension (C7).  Traumatic spinal cord injury is classified into five catagories on the ASIA Impairment scale.

A indicates a ‘complete’ spinal cord injury where no motor or sensory function is preserved in the sacral segments S4-S5.
B indicates an ‘incomplete’ spinal cord injury where sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5.  This is typically a transient phase and if the person recovers any motor function below the neurological level, that person essentially becomes a motor incomplete, ie ASIA C or D.
C indicates an ‘incomplete’ spinal cord injury where motor function is preserved below the neurological level and more than half of the key muscles below the neurological level have a muscle grade of less than 3, which indicates active movement with full range of motion against gravity.
D indicates an ‘incomplete’ spinal cord injury where motor function is preserved below the neurological level and at least half of the key muscles below the neurological level have a muscle grade of 3 or more.
E indicates ‘normal’ where motor and sensory scores are normal.  Note that it is possible to have spinal cord injury and neurological deficits with completely normal motor and sensory scores.


































A radiographic evaluation using an x-ray, MRI or CT scan can determine if there is any damage to the spinal cord and where it is located.  A neurologic evaluation incorporating sensory testing and reflex testing can help determine the motor function of a person with a SCI.

Around the world, proprietary centres offering stem cell transplants and treatment with neuroregenerative substances are fueled by glowing testimonial reports of neurological improvement.  It is also evident that when stem cells are injected in the area of damage in the spinal cord, they secrete neurotrophic factors, and these neurotrophic factors help neurons and vessels grow, thus helping repair the damage.  Independent validation of the results of these treatments is lacking.  However, in 2009 the FDA approved the country’s first human trial on embryonic stem cell transplantation into patients suffering with varying levels of traumatic spinal cord injury.  Although the clinical trial is currently only in its first phase, it is considered a giant leap into treating patients with spinal cord injury.  Specifically it is aimed at treating patients with acute spinal cord injury.


Tanya is Tetraplegic C4/5/6/7 Incomplete and this is her story.  
I was born in Newmarket in 1975. I grew up in Six Mile Bottom just outside of Newmarket but had a very close connection still as my Grandma lived there and this is how i met Joe as a child at around 7 years old.  I loved rollerskating, we went to a place called Rollerbury back then, it isn't there anymore.  When I was 8 years old we moved to Bottisham.  I used to cycle all the way to Newmarket, it was about 8 miles and then back again at the end of the day.  I was a very active child and loved the fresh air.  I used to work at Stocks Restaurant in Bottisham when I was 13 years old, this made me feel very grown up.  When I left school at the age of 16, I went to college and got my City & Guilds and NVQ in childcare and worked at All Saints Primary School.  I loved working there, I used to look after the children with special needs there so I found it very rewarding.  At  this time I was knocked off my Moped on the way home from Newmarket.  I suffered a compound fracture in my right tibular and fibular.  I was in a wheelchair for 4 months after that.  After making a full recovery from this injury I did a course in Hotelier and worked at The Cadogan Hotel in Newmarket. I led a very active life and loved going out and partying, I also worked in a bar as well so life  was pretty hectic back then but so much fun.  When I was 18 I visited my sister in New York, she was an Au Pair out there at the time, I visited some awesome places like Boston and I saw the Niagra falls while I was there but I found the pace of the USA to fast and I decided to come home, alone! At age 21 I was driving to work along the A1303 when a tractor decided to turn right without indicating and I ended up crashing into the back of him.  I suffered quite bad facial injuries resulting in plastic surgery on the right hand side and suffered Amnesia for five days.
After recovering from this second accident I decided to start travelling.  I went to Tenerife and Australia backpacking, where I got to swim with Dolphins! something I have never forgotton and hope to do again.  I visited Jamaica which of course was amazing!  Life was all going great for me for the next few years until 21 May 2001 when I was age 25 years old.
I was driving my friends home at around lunchtime from Red Lodge to Soham.  My friend asked me to stop at the shop in Soham so I pulled into the road next to the shop.  My friend went into the shop while I waited in the car.  Unfortunately, the shop didn't have what my friend needed so we drove up to the next shop, about a mile up the road.  I pulled up on the side of the road outside the shop.  After this we drove out of Soham towards the bypass.  I turned right onto the bypass and I did not see the car approaching from my right and it hit me, straight in the drivers door sending the car spiraling  I was in a Peugot GTI although after the impact you couldn't tell what car it was. I can still remember the bang to this day but from that point on I remember nothing until I woke up, although I do have some hazy memories which don't make sense.  I was driven by emergency ambulance to Addenbrookes Hospital, Cambridge.  The first thing I remember is waking up in A&E and being in horrific pain like someone scraping glass down my arms and I couldn't move. The next few days were filled with x-rays and a CT scan and lots of tests.  It was decided i needed an operation where I would have a piece of my hip bone placed in my throat to release the pressure off the discs, which they thought was what was causing the pain down my arms.  They thought my brain was confused by the accident which is why I couldn't feel my legs.  I felt at this time I would never walk again but the doctors remained optimistic.  Upon waking with stitches in my neck they informed me they had decided after opening me up it was best not to do this. I am a little unsure of the reasons behind this last minute decision. Over the next seven weeks I had various physiotherapy, occupational therapy and more tests but no one could really pinpoint what was actually wrong with me.  At this point they made the decision to transfer me to Stoke Manderville Hospital to their Spinal Unit.  At this time I still had an indwelling catheter that was fitted by Addenbrookes. It was decided almost immediately to fit me with a supra pubic catheter.  This is an insition into my stomach about 10cm below my belly button. (see photo below). This goes straight into my bladder and a bag is fitted to the pipe.  I call this my Gucci bag.  It was at this point the realisation came over me that  I could not move.  I was given a private room, until i was cleared of MRSA which is a precaution as I had been transferred from another hospital.  I had the pin prick test mentioned above, which is basically where they prick you all over asking if you can feel certain parts and if it is the same or different whilst your not looking.  I felt hopeful after this because I could feel some of it in my legs and other places.  They range this on a number scale (see chart).  At this point I was told I had 3 months to start wiggling at least or I would never walk again.  I was moved onto the ward and started my rehabilitation.  This included attending Physio everyday.  I would go for different kinds all throughout the day including the Hydro pool.  After a few weeks the times were increased until at one point it was almost 8 hours a day.  I couldn't transfer items from my left arm to my right and i couldn't hold my arms up at all, especially my left arm.  This meant I could not feed myself still.  After about 3 months of having this routine, I felt settled in and in a safety bubble because everyone around me was going through a similar thing.  Things like having our suppostries inserted at 6am every morning, imagine us all having a poo in that ward!  Somehow I kept going all this time, within this bubble I tried not to think about the future to much at this point. One major achievement of mine whilst in the unit was I played wheelchair Rugby in aid of Children in Need.  This was awesome and I really became quite good at it and it was for a great cause at the same time.  I was allowed home a few weekends to my Mums.  I went once on my birthday but it was a massive thing to do and I felt like I wanted to go back to the security of the Spinal ward.  Eventually I was diagnosed with C4/5/6 and 7 'complete'.  I left hospital and went home to my bungalow in Red Lodge, where i was cared for by an agency followed by social services.  Adjusting to all of this was incredibly hard.  I felt totally lonely and went into my own little bubble where I would pretend it wasn't happening.  I still wont have my wheelchair where I can see it at home and I wont have rails outside my home.  I had as little done to my house as possible.  I had the doorways and hallways widened and a wet room fitted, after nearly drowning in the bath.  I experienced many carers during this time, perhaps I was a little awquard at times who knows!  It was hard to have strangers using my things in my home and just being in my home.  I had always lived on my own before this.  After about a year or so of the carers coming I decided to have a friend care for me on a full time basis.  He moved in and  learnt how to care for me along with the district nurses who came in the mornings to do my bowl management and personal needs and showers.  I still had to be fed me at this time so he did that.  I refused to use the straps they supplied me with to help me eat, so I eventually learnt that if i wove the handle of the fork between my fingers i could just about get it up into my mouth.  This made it a little more lady like in my eyes and less obvious.  i still have to have my food cut up for me to this day.  Having him as my carer worked great for about two years but its hard to be with someone 24 hours a day everyday, especially under the circumstances and things became very hard for both of us and we made a mutual decision for him to move out.  Also during this time (2005) I contracted Clostridium Difficile (C dif), which I later found out was rife in Stoke Manderville during my stay there.  I was rushed into hospital, projectile vomiting.  My heart was racing in the ambulance and I felt like I was dying. I had to have a tube inserted in my nose down into my stomach for them to get three bags of dark green poison from  my stomach.  This also gave me septicemia.  I was very ill.  I came out of hospital after almost a week weighing a mere 6 stone.   In 2006 I was diagnosed 'Incomplete'. I was made up with this it was a huge step for me.

 In February 2006 I was around my friends house and Steve, who I had met previous to the accident came around to see me and see how I was doing.  I was about to leave at this time to go skiing in Sweden with the Backup Trust for the second time,so I arranged to see him when I got back.  On my return from skiing I met up with Steve again and over the next month or so we fell for one another.  Steve suggested moving in and becoming my full time carer because things had not been working out with my friend.  So this is what we did.  Little did I know at this time I had found my soul-mate.  He is the best thing that has ever happened to me.  Without him and the help of my family I really would have ended up in a residential home. He does everything  from personal care including bowl/bladder management to brushing my hair.  He dresses me, does my exercises, he takes the lids off my make-up although I have mastered putting it on myself.  He straightens my hair and paints my nails.  He does everything!  He is a true angel sent from heaven and I love him very much.  Steve doesn't see his role as my carer, he does it purely out of love for me.  I am a very lucky girl!  I was also lucky to meet Ricardo Darcia during this time and through Aspire he ran the half marathon in Bath and raised £3000 to buy me my wheelchair! Which I am forever thankful for as without his help I never could have raised enough money.  Another £250 was donated by a very special friend called Christine Chick.  Her son, Ricky Chick age 27, tragically died after trying stem cell treatment in Ecuador, please read his story on the link below.

Basically today I am left confined to a wheelchair.  I can move my right arm up to my head and my left arm level with my shoulder.  I have my supra pubic catheter (see pic on left) attached to my 'Gucci bag'. Steve changes the bag on this for me and every now and again he changes the tubing into my stomach, which hurts.  Its strange sometimes if I have a blockage in the pipe like for example i am leaning on it, I start to get this  overwhelming feeling that I need the loo!  For those of you that might be wondering, we have a great sex life, I have total feeling in that department!  I know when i need a bowl movement so Steve helps with that. This involves him inserting a suppository and then me lying on my left side and passing onto a Inco sheet and Steve then disposes of this for me and then its shower time and dressed.  I have a special Propad mattress with a plastic removable cover on, this helps to prevent me getting bed sores. My exercises help with management of all of this and keeping my metabolism at a level. I am now down to 12 tablets per day plus sometimes I need extra pain killers.  I also have a special adapted exercise bike which my family bought me so, I am going to be cycling to Brazil and back on that, well in my dreams lol.  I use free weights as well.  My aim now is to be standing at least three times a week.  I have a standing frame at home so I have started working with that now so I can learn to weight bare.  I pop back every couple of years to the unit for my 'MOT' and occasionally for my physio rehabilitation, which is a full time table and it makes me shattered to just look at it.  With Steve behind me I really feel like I can attempt everything and he really does keep me going.

My achievements since my accident
I have been skiing twice since the accident.  The first time was in 2003 organised by the Back up trust.  This was amazing.  We had a buddy to get us ready and they drove us up to the slopes and basically took care of us.  They sat me in a ski car and taught me how to control it myself and eventually go down by myself tethered!  I then went again in 2006 this time i was an expert and came back with my licence upgraded to the next slope! I could now go up in the ski lift on my own and come down un-tethered watch the video on the link below!

In 2009 I decided I was going to do a parachute jump in aid of the Spinal Injuries Association.  I did this through UK Parachuting at Sibson Airfield. They were awesome there.  I jumped with Chris who was the Chief Instructor and he had done over 2000 jumps so I knew I was in safe hands.  What a rush! It was a fantastic feeling.  They gaffer taped my legs together and as we came into land he kicked my legs up and we glided in! My Mum almost choked on her heart! I was first out and last down! See me in action on the link below!

We have been on holiday three times, Steve, me and my family.  Twice to Cyprus and once to Portugal.  We found a beautiful villa in Cyprus where we stayed both times.  It wasn't adapted but it was perfect.  It had steps but they were very wide and Steve could carry me easily up them. The pool there was awesome, something which helps me no end, and of course its a must to lay by to catch the rays!  Unfortunately, the owner decided to move back in so we are no longer able to use it.  We flew with Easy Jet and sat at the front of the aircraft.   I found the longer the flight the more unpleasant because I am used to lounging!  We hired a car and drove around the various places like Aiya Napa and Pathos.  I found Cyprus very accessible, although Aiya Napa was hard work as there are a lot of hills.  Portugal was accessible but there were quite a few high drops off the kerbs but this was four years ago now so things may well have changed now. To be honest, with Steve by my side and accessible accommodation we managed pretty well!


My hopes and ambitions.
I would like Steve and I to have a holiday this year, as it has been a few years now since we had one and Joe is hopefully going to help us find this through Disability Holidays Guide.  On their guide they have a beautiful place in Curacao in the Dutch Antilles called the Dolphin Suites where you can go and have dolphin therapy and stay in a wonderful accessible hotel now as I said above, I would love to swim with dolphins again and this would be the perfect place but the thing is I do not know if I could stand such a long haul flight as I have mentioned.  We want somewhere accessible and where I can see the culture of the country in my wheelchair.  A pool is essential not only to lie in but I love the feeling of being in water and of course this has to be easily accessible to me.  I would love to go to Jamaica again and I have heard there is an accessible island there but I don't know if I could fly for that long. We hope to get married this year so maybe we could incorporate that, we will keep you updated!
I am going to write a book on my road to recovery in the hope it will help others to adjust after leaving the spinal unit.  I would also like to write childrens books concerning medical equipment like my supra pubic catheter and bag so as to make them more aware and less scared.  Perhaps even an 'ABC' book for example A is for Accident etc.
Steve and I would like to have children.  We have suffered two miscarriages and I am currently undergoing tests to see where we can go from here with regards to me carrying a child full term.  We are also considering fostering as well, again I will keep you posted.

I love arts & crafts and love painting.  I taught myself to do this with all the time I have now and I have to say I am very proud of my achievements. (see my picture on left)! I would like to go further with this but I am unsure where at this time, you never know though!  I love making jewellery too but steve has to help me with that. I would love to learn another language and one of my next plans is to learn to drive!!



A last word from me, Tanya
With my scrapes in life it has made me appreciate how lucky we are to be here and how precious life really is.  I thank everyday that I get to spend with Steve and my family and friends.  I get annoyed with lazy people in life who lie about moaning and feeling sorry for themselves, I try my very best never to do this.  I would advise anyone in my position to never give up and always realise it could have been a lot worse.  It is not about what you cannot do it is about what you can!  We didn't choose to be this way but we are.  Its not what any of us chose but we have to get on with it and make the very best of it that we can.  If by telling my story it helps one person then I have achieved something from sharing it with you.  I really hope you enjoyed reading it and thank you for doing so.

A quick word from the blog writer, Joe
Knowing Tanya as a child and seeing her today sitting on my sofa makes me feel very humble to be honest. To look at her sitting there you would never know that she cant just get up and walk out like I can.  I've always known her circumstances but having written all this and thinking about it all I really didn't consider everything else that goes with a spinal cord injury.  Now when I think about the things I complain about, really they are totally irrelevent and a waste of life.  Tanya is so full of life and happy.  She does not dwell on her past one bit. She is a true inspiration.  She just wants to make her life better and help others.  I think bless her heart as she slides down the sofa and Steve nudges her back up for the fifth time. I admire Steve.  He is loving, caring and patient, which I would imagine he needs lots of with Tanya!  You can clearly see how devoted he is to her, it was lovely to witness and he is also a true inspiration in life and unfortunately he is a real rarity in this day and age. I would be happy with half the man he is.
I really hope you enjoyed reading Tanya's story as much as I enjoyed writing it and if you would like to comment below then please do, we would love to know your thoughts.  If you would like to be put into contact with Tanya please message me and I will arrange this for you.

Below are some useful links, some of which Tanya mentioned above and some which you may find helpful.  Please mention where you saw these links if you contact any of them. Thank you

A fantastic guide to Accessible Holidays

The Back Up Trust - Transforming lives after spinal cord injury

Aspire - supporting people with spinal injuries

Spinal Injuries Association

Apparelyzed - spinal cord injury peer support

Christopher & Dana Reeve Foundation

Spinal Injury Skiing video

Tanya's Skydive

A short article about Tanya's friend Ricky Chicks who died after receiving Stem Cell Treatment

Impossible dream - Facilitating outdoor sports for disabled





  

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