Day After Onset, Diagnoses and Treatment

I woke up the next morning in the ER and went to sit up in bed when I realised I was unable to. What a sleep and I am not better.  As I ran my fingers over my body I realised that no sensation had come back and my stomach sank. At around lunch time the Neurologists arrived and informed me they would do an MRI scan, so I was taken to the hideous machine and my spine was scanned as they guessed at that stage it could be a tumour pressing on the spine. After the MRI I was returned to my bed in the ER and told they would come and do a Lumbar Puncture. I was scared at the thought of it and it is a test I would not want again. The Lumbar Puncture came back normal and I was then told to lie completely flat on my back for 4 hours to stop spinal fluid leakage and a migraine. I did as told and during this time they informed me that the MRI showed no tumours or anything was pressing on the discs etc that could cause paralysis. As they scratched their heads I was told I would later be returned to the MRI for another scan of the thoracic cord, spinal column. At this stage I had not seen my boys for nearly 2 days and I wondered if they were worried about me, upset and how I wasn't there to tell them I was ok, a mothers instinct I guess. It got late and on the Friday night I was admitted to the Neurology Ward 8C at Gold Coast Hospital. The next morning I was put back in the MRI machine and that is when they discovered the lesion in my spine that had damaged my spinal column. The lesion was causing the paralysis and the term was Transverse Myelitis. As I asked the nurse what that was her reply was simply I don't know, never seen it. Another nurse then was asked and could not provide me the diagnosis. I had internet literature and whilst reading realised I was facing a life changing illness but to what degree I did not know. See there are three categories they say.

1. They patient will make no recovery and be in a wheel chair
2. The patient will make partial recovery but be left will illness and some disability
3. The patient may go on to make a full recover.

It was Saturday and my Neurologists was not back til Monday morning so I spent the weekend wondering which category I was in and how my life would be hell if it were the first, no so bad the second and great if the third. They immediately told me that they were going to start 3 days of methyl pred intravenously and that should give me some movement back once the swelling round the spinal column had gone down. It didn't and I still could not wiggle my toes. So they decided to try for two more days which would make 5 and that is maximum dose that could be given. Each morning I would wake and try will my strength to move something and in my mind it was happening but looking at my legs it wasn't, I have never been more frustated in my life. My boys visit and lift my spirits and I wait til they leave with their dad before I break down for my crying moment so they did not see me. After 5 days I had still regained no function and my neurologists told me I was like going to fall into the first category, no recovery,  as I hadn't showed any improvement. Now I am scared and the thoughts that went through my mind of how I would care for me and my children. What about my job, what about driving what about everything. No I wasn't going to be in that category too many people were praying and showing support and their prayers had to work. The next morning on rounds my neurologist who was treating her first Transverse Myelitis told me I was a bit of a case study at the hospital as the statistics are one in a million people. From that day I had bunches of student doctors prodding and poking me and using me as a case study for their final exams, they seized the opportunity as they may never see another case in their career. I didn't mind if it helped them toward becoming a Neurologist like I needed so bad right now. My doctor approached me about trialling a new treatment for this called plasma exchange to see if it helped and being desperate I agreed.. I was sent to the OR and had a permacath placed in my juggler vein that came out on my chest. Each day I was hooked up to a dyalasis machine for 2-3 hours for each exchange to replace my immune system which they thought was causing the disease. After day 5 I was sat up in bed for breakfast and my toes moved. My physiotherapist who called round each day excited me when she said excitedly “see, see its not dead, the legs not dead”. I cried. It had now been the 2 most excruiating weeks of my life away from boys in hospital who visited every second day as they had a 1 ½ hour drive each way and school and the burden was too much. Their dad had come down to Brisbane to stay with them at my house and transport them back and forth to the hospital and provide me with the support I needed. My parents came every second day, my in-laws a few times a week and between I had relatives and friends. Flowers came endlessly and I was overwhelmed at how many people in the community were on my side. My doctor then told me she wanted to plasma exchange me another 7 times that would be a total of 12. The girls in the dyalasis unit lifted my sprits as did all the nurses at that hospital to me they were amazing. I dreaded the thought of another 7 days in hospital that would be three weeks.  It was then she dropped the bombshell and told me I had to have it every second day. That was another 2 weeks. As she left my room I felt like I was suffocating, my breaths were short and I could not stop the tears from flowing I just wanted my boys. It unfortunately was a day I had no visits planned and I was alone. I drew the curtains and cried all day on and off on my bed between the sessions of feeling like I was suffocating and at one stage considered checking myself out. I did not care if I ever walked again I just wanted my children and home. They sent a hospital psychiatry lady around who sat with me for an hour and chatted and in the end asked if she could borrow my tissues, yup I had made her cry. So on we went and after 12 plasma exchanges, gruelling physio and 4 weeks later I could get myself from chair to bed to shower chair. I was so clever. The physio was always trying to help me stand and the feeling of not be able to do something you daily take for granted that our body just does is horrible. As I tried this many times I would sweat and get nauseous as though I had run a race and one day while watching my parents faces as I tried to stand up from a chair it was gut wrenching. They looked helpless like they wanted to grab me but unlike a child taking their first steps this time there was nothing they could do, Their faces too are now embedded in memory. The sound of my father in law trying to be brave and not cry when he saw me.....horrible, my mother in law being ever so strong horrible and my Aunty that had flown up from Melbourne standing there smiling telling me you can do it sweetheart, you have so many people praying for you. My brother and his pregnant wife would visit with their son and he would be so concerned what they were doing to Aunty Leah and I looked at her belly with a new bub inside and remembered the excitement and anticipation of my boys births and how I wanted to be home with them. Michael and my sons remained strong and stoic and to this day I am so proud of my young men and how they coped. So after 4 weeks they broke the news they were sending me to rehabilitation to try and help with regaining some function. I still had limited bowel and bladder control, I had not regained any sensory functions and the pain was starting to set in. It burns, It tingles, it goes numb and it aches. I was sent to Murwillumbah Rehabilitation centre an amazing place I thought I might spend a few nights learning how to cope at home with limited movement. Nope I had to stay there for 4 weeks, that would make a total of eight weeks hospitalised and how could I possible spend the same time I had just done again in a new hospital with new people I hadn't got to know. Once again the tears and depression set and I had a day behind the curtain. I underwent physio twice daily and within 2 weeks was able to shuffle, waddle, swing whatever you would call it on a walking frame. Gee I was clever,  but as some of the function began to come back the pain from the damaged nerves all over my body just got worse. Another 2 weeks on and I left Murwillumbah Rehabilitation on a walking stick and took with me a few friends I have made for life. I am still in the current state 7 months later, my progress is slow, if any lately and the sensory loss has never returned meaning I am numb to hot or cold making it impossible to regulate my body temperature and I don't feel pain in certain areas which they say is dangerous. I have bowel and bladder issues but most the time am able to control my functions with no problem. I use the toilet about 20 times a day as my bladder retains approx 200ml each time I go and I can only hold about 500ml before busting so that doesn't leave room for a long time between. My lady parts still have an odd sensation and I have just had injections into my wrists to help the pain from the carpel tunnel I have developed as a symptom since being home. I arrived home to my new very different life 3 days before mothers day in May which was the best present I could have hoped for to 3 amazingly strong and independent boys who to this day help me and protect me like the day I collapsed. Caelan, Joshua and Abel, I can only hope this experience has made you stronger and more independent young men and as you get older  you will have an understanding of how easily your world can change at the drop of a hat. Tomorrow I will continue from last week when I found out my physio had called his part done and I found out the community I live in was organising a fundraiser for me. This will amaze you.