This all started when I was 12, I woke up with pins and needles down the right side of my body and what I can only described as losing my depth perception. We went to the doctors who noticed I had Nystagmus. I was sent to hospital for a CT scan and a neurological exam, which showed nothing of interest (Though I went from being able to do pointe work at ballet to not being able to walk heel to toe). I got diagnosed with an Acute Cerebellum Ataxia (crazy name for the cerebellum just not working – for me because of a viral infection I had.) and left to it.
Over time I had to learnt how to write and walk and balance again by myself. I was left with residual numbness in my right hand. A few years later my symptoms progressed to chronic pain, drop attacks, and just about every symptom available it felt. We saw many health provider and natural healer to no avail. This was also on top my chronic asthma so we had been dealing with illnesses since I was two years old.
I moved out of home last at 18, I saw a GP after dislocating two fingers and the rest of my body felt like it was falling apart. This great doctor actually recognized something was wrong with just seeing me once and sent me to a neurologist for a MRI (my uncle has Multiple Sclerosis (MS) so we had been begging them for one cause my symptoms were very MS like). While the neurologist did not feel like anything was wrong he gave us an MRI. We came back a week or two later and he strangely re did all our neurological tests – he later explained that he thought he grossly under estimated me responses to the tests based on what he saw on the MRI. I got a diagnosed with Arnold Chiari Malformation to the level of the posterior arch of C2 (25mm+, quite large) and Syringomyelia that was C2-T10 and encompassed and stretched the width of my entire spinal cord.
I since then have had two posterior fossa decompressions, see surgery story 1 and 2. Which have yet to give me any relief – the diameters of my syrinx has decreased but not completely and the length has not decreased. My main problem has been pain related issues, which is not uncommon. I have tried many different medications from codeine to pain rehab to ketamine to morphine. I know have a mechanical pump (intrathecal pump) which gives me morphine 24/7 into my spinal area which has helped a lot but I still have a way to go.
I have been to many different doctors in many different areas and seen the good the bad and the ugly. At one stage before my pain pump I was bedridden receiving meals on wheels and cleaning assistance. I am now trying to go back to university and even though I am on the pension still I do 5hrs work a week to help pay my bills.
I will keep updating my story as things happen ☺