Fight of the Syrinx

After the Diagnosis.

What is this thing?

If any of you have been on the receiving end of a strange and/or unknown diagnosis, I am sure you can understand the flood of emotions I felt after being told I had a syrinx. First of all I was extremely grateful that I did not have Multiple Sclerosis. Then came the shock, what is this thing that I have growing inside of my spinal cord? So I did what every doctor or health professional tells you not to do, I googled it… After reading article after article for what seemed like hours I called my husband. I was in full blown panic mode! My husband being the wonderful man that he is talked me down. He helped me see that even though it was an unknown to me, that I was not the only person with a syrinx. If you would like to learn more about Syringomyelia click here.

Life goes on.

We made another appointment to meet with my neurologist and to come up with a plan of action. It was decided that we would keep an eye on it. I scheduled a follow up MRI and waited and waited and waited. So for four months I went on with my life. But it didn’t matter if I was working, being a mom, or spending time with my family and friends, I always had this little worry nagging at my mind. During these four months my symptoms continued to get worse. My hands were getting so weak that holding a pencil to write was a challenge. Obviously this was affecting my life, both personal and work. I was afraid of holding my then 2 year old daughter and working with patients was nearly impossible, just to give a few examples. I had my second MRI and went back to my neurologist. With my syrinx growing and my symptoms worsening he referred me to a neurosurgeon.

The next step.

After being referred to the neurosurgeon I started to do some much needed research on what possible treatments options there were. What I discovered was disheartening. My options were very limited, and by limited I mean there is really only one form of treatment. And that one treatment was to have a Shunt placed inside the syrinx in order to allow the fluid to drain and release the pressure on my spinal cord. This means that I was looking at spinal surgery. When I met with the neurosurgeon I was so nervous. I kept thinking maybe I am being paranoid or overreacting and I really wont need a surgical intervention. All of this was whirling through my mind as my surgeon walked in and with a firm hand shake introduced himself. We reviewed all my MRI’s and talk in length about my symptoms and how they were affecting my life. At the end of my appointment my surgeon turned to my husband and I and said the words I was dreading to hear. I needed to have the surgery, and I needed it soon.

 

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