ASAP Website

When I was initially diagnosed, I had no idea what the doctors were really talking about. At the time, I was in the hospital so I couldn't do any research. The doctors said that it was a "syrinx - a fluid filled cavity in the spinal cord". Someone mentioned that it causes neurological deficits and "could" cause the tremors I was experiencing.

To tell you the truth, I was out of it from the wonderful IV pain relievers. I wasn't really alert and focused on what they saying or what it really meant for me. I heard the Neurologist state that I might need surgery but, I also heard him say that we'd talk about that once I was released from the hospital. He gave me his business card and told me to call his office for an appointment, after my post-op visit. He didn't really know what a syrinx was or anything about it, so he performed an EMG test and referred me to a Neurosurgeon.

The Neurosurgeon did a brief exam (I remained clothed) and ordered a full spine MRI with and without contrast. After the MRI, I went to see him again. He reviewed the MRI and (based on Mickey's recollection), stated that the syrinx could cause all the symptoms I was having (and some) but I was not a surgical candidate. He explained (and drew a diagram) that it would be dangerous to operate on the syrinx until it was larger or I was paralyzed. Until the syrinx was larger, surgery would be a very high risk because of the size and location. He stated that operating on the thoracic spine, in general, was a great risk. Before he left the room, he said "it could be worse". Considering the progression that has occurred over the past two years, he was definitely right.

Unfortunately, I left feeling as though I was still clueless. I searched and searched the Internet, looking for any and all information I could find on "thoracic syrinx". I was also looking up spinal hemangiomas because of the fracture at L4 and because of the new one that had developed in 2 months, at T10.

I found http://www.asap.org/. ASAP was in the process of closing one message board and creating a new one. I started on the new forum so I didn't have to read too many older posts before I was current. In the one week it took for me to read the older posts, I was finally learning what a syrinx was. I was able to learn from people who were actually living with this disorder. I seemed to be more progressed than others but we were all struggling to deal with depression, pain and increasing symptoms.

I still didn't understand how I progressed so rapidly but once I learned what symptoms could occur, I could remember having symptoms years before. The mornings I woke up sick before going to work. Being sick all day at work, sometimes laying on the floor until I felt better. I got better when I left my job, but I still had symptoms and in less than 6 months, the tremors took over my life.

That first 6 months of depression was the worse time of my life. Once I started visiting the ASAP forum (message boards), I became a different person. I started moving from depression to acceptance. I started making changes to accommodate my disabilities. I started realizing that having Syringomyelia meant that I had the disorder which could progress, but it was not a death sentence.

When existing symptoms increase, or new ones arise, I needed to find a way to manage it. I needed to find a daily routine that would keep me from being up one day and then down for three or four (which was a constant for me). If I had not found the ASAP forum, I might have stayed in the depression stage forever (who knows). I do know that I depend on the "family" I now have. Everyone there is very supportive, knowledgeable and encouraging.

It's important for me to visit the forum everyday, more so when I'm having especially bad days. I don't know where I would be in understanding and managing what I've been going through, without the support, encouragement and knowledge I obtain from my ASAP family.