Wednesday, August 20, 2008

Transverse Myelitis

Oh my gosh have things changed for me in a flash. Monday morning back in April I got to my desk as normal at 7am after dropping Richard off at school (they do start school early here!). Preparing for the day at my desk, I started to feel as if I about to vomit. I decided to go home, thinking it was food poisoning. The next day I felt no better and again on Wednesday, now it was time to go see a doctor, the doctor told me there was nothing to worry about and gave me a shot to stop the vomiting. Nothing had changed by Friday and I asked Suzanne to take be back to the doctor. Again he said nothing to worry about and gave me a second stronger shot and couple of pints of plasma as I was very dehydrated by this time. I came home and after a few hours felt even worse. I was so surprised at how much one can throw up having not drunk or eaten for 5 days. This time I asked to be taken to the hospital. At this stage the only thing wrong was I could not drink or eat and I would vomit every hour or so! At 2 am on Saturday morning they finally admitted me to hospital.
In hospital they ran the gambit of tests, and told Suzanne I would be released by Wednesday, there was nothing to worry about. I still could not eat or drink, but I was getting weak. I was also put on intravenous feeding - some turkey soup looking stuff in a bag and strong looking milk which the fed me through my veins. It was the Wednesday that I attempted to sit up that I discovered I could not move at all, I was paralyzed. At this point they moved me to intensive care and ran a bunch more tests. At this point our local hospital, not having the correct specialists decided to move me to the main hospital in Charlotte (we actually live 11 miles south in a suburb of Matthews).
In the main hospital I was seen by every specialist under the sun and was eventually diagnosed with Transverse Myelitis (TM ), after 2 MRIs and a number of CAT scans. TM is a rare syndrome which effects approx 1400 people a year in the US and is characterized by inflammation of the spinal cord. It results in the loss of motor, sensory, bladder/bowel functions. For me it hit very hard, I lost all movement below the T4 (forth vertebrae below the neck), so I lost my stomach muscles and all movement in my legs, I was unable to even sit up, lost all feeling below the breast and lost bowel and bladder function. My arms are good and very helpful, but by the time I tried to used them they were very weak, and fairly useless.
Research at John Hopkins concludes that 1/3 of patients have a full recovery, 1/3 partial and a 1/3 with little to none. There is no known cure and as my doctor said to me “we will know how well you are doing by how well you are doing”. Mind you in hospital no one would tell us any of this, we were totally in the dark.
Suzanne had to go to great lengths to look after the kids, keep my office going, work and visit me everyday. As I recovered I could see how much the worry was wearing her down. Eventually I was able to return to solids and after a 4 week treatment of very strong steroids was able to eat solids again.
Hospital was generally very unpleasant and I was delighted when I was finally informed that I would be transferred to a rehab hospital, one of the best on the east coast. The hospital had a 144 bed for Spinal cord and brain injury rehab center. So after 5 weeks I was placed in a new bigger brighter room and under nurses and doctors who seemed to care. It was like sunlight in the morning.
At rehab they worked me hard. Each new exercise or step seemed impossible, from first getting into or out of a wheel chair to getting my socks on. 5 hours each day, gradually I got stronger and learnt how to dress myself. On the last morning I had to pass a test and dress and wash myself with no help. I did it, but it took 90 minutes. After 4 weeks in the rehab hospital I began to emotionally to break down, there was nothing more to it, I had to get out, I was sure I was going to die it was so bad. On the 12th of June they released me to go home.
Going home was full of anxiety, I would not have any nurses to look after me, I would not have the air bed with nice handles to help me sit up, I would not have help with my bowel program or nurse to help move me at night.
Our home is so ill suited for a para! We have 6 bedroom and 4 bath rooms, none of which I can reach to! They are either upstairs or down below. Suzanne converted my study into a bedroom and the boys had to carry me into the house in the wheelchair up the 5 steps from the street.
Once Suzanne finally got me into my own bed that Thursday (12 June) my left leg MOVED! Small but a real movement. I really wanted a bottle of champagne!
The prognosis from John Hopkins say the biggest improvement, if it is going to happen will occur in month 3 through 6. It is 4 months, and two months since leaving hospital since I was struck with this and the last month has been one of continual improvement. We have just returned from 3 weeks at the beach. I made such great head way my therapists could hardly believe it when I returned to therapy. I only had a short day 12- 5, principally staying in bed, but I managed to swim for least an hour each day and in the pool I was able to build on the movements in my stomach and legs. The improvement was so good that my therapists tried me in a walker. I was able to stand, my arms doing most of the work, BUT.. I see where this is going.
The sensory aspects have caused me the most problems recently. I still have not feeling but I have a numbness all over which is my brain interpreting messages as pain. It is difficult to get comfortable in any position and I can’t stay in the same place long. Bed is the best place! If I could get over the nerve pain I would be fine, I can do everything from my wheelchair now.