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I had a dramatic on set of symptoms. I first realised I had a problem when I went for a swim. I know how I normally felt in the water and became concerned when I lost strength in my right hand, to the point I couldn't feel  myself pulling through the water. I also noticed I would drop things easily and not be able to hold on to shopping bags, surf board etc. I then had a loss of sensation down my right arm. I also noticed I had tingling and pain in my right foot and ankle.  

 

I saw my local GP who did some tests and didn't think there was anything wrong but he referred me to a neurologists anyway. It took 3 months to get an appointment. In this time I continued to see my chiropractor who ordered a CT scan.  It showed I had a compressed disc  between C6-7. But the symptoms were continuing to worsen. 

 

Late December I felt pins and needles go down my left arm then it became weak and numb. I had numbness in my pinky and ring fingers on both hands and loss of strength in my middle finger and pointer fingers on both hands. I couldn't hold a pen properly or write properly. I finally had my appointment with the neurologists who did some visual tests, some pricking and poking. It showed I had loss of sensation in both arms, across my back and down my legs. There were places that were numb that I didn't even realise. I would have a shower and have the water running on my back then turn to wash my face and would nearly burn it. Not realising it was so hot. The neurologist ordered a spinal MRI which I finally had. It came back showing I had a 19cm syrinx from my C2 to my T4. At it's widest point it was 1.8cm. 

 

I had no idea what a syrinx was and whether it was anything to worry about it. My husband did extensive research on the internet and we realised it was a problem. I then saw a neurosurgeon who said to keep a diary for a month to see if my symptoms worsen, if they don't get any worse then I would just have to live with it. I said they had dramatically declined in such a short time and he said there wasn't much that could be done other than a shunt into the spinal cord and that there was a chance of limbs being effected. He followed this on by saying, because it was so high up more limbs than just your legs could be effected. I came away scared, angry and not really happy with what was said. 

 

My husband had found  Professor Stoodley in Sydney who specialises in this particular condition. So he emailed Professor Stoodley  asking for advice. Professor Stoodley emailed back that same day saying he was more than happy to see me and to make an appointment with his secretary. Which we did and we were flying down to Sydney 1 week later. Professor Stoodley had a look at the MRI said he wanted another MRI done. He suspected it was Chiari and Syringomyelia. The next lot of MRI's showed it wasn't a tumor and that it was A-typical Chiari Malformation. He thought it was the cause of the Syringomyelia and wanted to operate as soon as possible. He said he didn't want to wait as he considered it to be quite serious and if I had another dramatic decline I would more than likely be in a wheel chair. Professor Stoodley operated 2 weeks later. I had a Posterior Fossa Decompression and was in hospital for 7 days. I developed Chemically induced meningitis in hospital which was quite painful. 

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I am 6 weeks post operation and the syrinx has reduced in size and I am able to start exercising again. I know it's a long road but I have strength back in my hands, still some numbness but getting better all the time. I am back exercising and starting to feel normal again. I have another MRI in 6 months to keep a check on it. 

 

I am so fortunate my wonderful husband found Professor Stoodley or I would still be suffering. I can not speak highly enough of Professor Stoodley he has given me back my life and happiness. 

 

I hope this gives other sufferers hope. 

 

Janelle xxx