Jamie Stewart, on Jun 9 2009, 03:45 PM, said:
My boyfriend is 21 years old and suffered an a non-traumatic spinal cord injury on May 8th, 2009. Inital symptoms were chest pain and numbness in both arms. He was taken to the ER via ambulance. Upon arrival he was able to walk and communicate infomation to the paramedics. While sitting in the ER he stated that his chest pain has subsided but still could not control both arms. Within five hours, he was unable to move his legs and began having difficulty breathing. MRI was negative and neuro specialsit diagnosed him with Gullain Barre syndrome. He was sent to Vanderbilt for additional tests. GBS was moved down on the list due to no trigger and symptoms were in reverse order. A second MRI was performed and showed a blockage. Since then he has had three plasma exchange treatments and has showed improvement. He has been able to move his shoulder, communicate w/ trach, increased sensation in limbs, and feeling burning sensation in legs and butt. A dye tests was performed and no blockage was found, but docs were only able to view "sections" and the body could have expelled the blockage. His breathing has greatly improved but still with the aid of a ventilator.
The doctors do not seem optimistic and believe he will be quadriplegic for the rest of his life.
I am just looking for someone that has been in this situation and can help answer my questions. I still have hope because of his age, physical fitness, and that he has never lost sensation.
Any advice, words of wisdom, any thing really would be of great help.
Thank you,
Jamie
Jamie,
Firstly I must say that I do not normally talk about my stroke as it brings back very bad memories for me, but after reading your account of your partner’s story I had to reply to it due to the similarity of both our cases.
My stroke occurred 10.40 p.m on 13th May 2007 and it happened exactly as you described, chest pains and both arms went numb. I was taken via ambulance immediately to Casualty(ER). Same as your boyfriend I was totally aware mentally and this confused the doctors as they expected a bleed on the brain and as my limbs were shutting down the inexperience and lack of knowledge completely baffled them and they diagnosed my condition as Gullain Barre syndrome As it was the night time there were no consultants available so they put me onto a ward. About 5 hours later I was totally paralysed from the neck down and had great difficulty breathing. They then realised that I was in critical condition and a consultant neurologist was then rushed to my bedside and straight away noticed that my ability to pass water had gone and immediately ordered a lumber punch to obtain spinal fluid, and rushed me for an MRI scan. Unlike your boyfriend they spotted an abnormality on my spine and I went straight to intensive care unit.
Due to bladder problems not being associated with gullain Barre Syndrome, he diagnosed me with Transverse Myilitis and what was a complete different step to your boyfriend and me I was given maximum dosage of primisolone (steroids). I was on the verge of being ventilated due to both the shutdown of my muscles and shear panic. My Wife and mother had 30 minutes to calm me down before they had no choice and thank god that I was just stable enough with an oxygen mask.
I stayed in intensive care for one week and still paralysed I was transferred to a specialist spinal centre. I too felt small sensations and various slight movements as the weeks went by.
After 8 weeks I started to regain movement and after 16 weeks I was walking using crutches. My doctors and specialists all told my mother and wife that I would probably never walk again, but I proved them all wrong and was allowed home after 22 weeks. There is always hope and as the expert’s knowledge of the spinal cord is very limited they always give you worst case scenario’s not to give false hope. It appears that such an injury is like a lottery and they don’t know the outcome. As soon as I left the spinal unit I again saw the same neurologist who diagnosed me with TM. He repeated the MRI and after careful analyses of the data concluded that I suffered a spinal stroke. The main factor for a spinal stroke diagnosis was the rapid onset of paralyses less than 8 hours. They never actually found the exact reason after every test available and put the episode down to a one off unlucky blockage that caused the damaged then cleared itself. I too was quite young at 37 and the doctors and specialists put down my amazing recovery to my age and physical shape, the quick administration of the steroids and my will power.
I still have many problems to overcome in life and suffer with a lot of nerve pain and have incontinence problems, but I am able to walk now with a limp and still get to see my gorgeous daughter Jorja aged 4 growing up and my supportive wife who has stuck with me though thick and thin during the 26 months of this living hell.
We are now getting there and I seem to be managing my problems. I still see 5 specialists in various areas of expertise and as I am now considered high risk I will always have to see these people. I do not feel pain or temperature from the chest down, which can be dangerous, but the main sense touch was spared so that I am glad for.
Don’t give up hope; there may be a recovery as he is only 21 and physically strong.
I hope you all the best and any questions don't hesitate to send me a message and I will answer any question to the best of my ability.
Kind Regards
Jason Jenkins
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