The syrinx isnt fully blocking my spinal cord yet. But it is widening as it goes down. I am not sure why they labled me as terminal. It is still growing just starting to widen more as it goes down instead of widening more in my neck and fully blocking my cord. Surgery isnt an option for me due to how long it is, they said a shunt wouldnt work because the syrinx is so long. The only surgery that wold work is widening my spinal column around the cord. But the issue with that is my bones are brittle. I compressed L1 and C5 when I was in my 20s and that is what they say caused me to get SM. I have a degenerative bone diease in my back and widening area around my spinal cord will only make the condition worse. i would end up with rods from the neck down which would limit my range of motion. The plan they have set out is, to wait until it paralizes me and then go in and try to get somethings back. But not before. I saw 5 NS before we had one finailly explain to us why all we kept hearing was "I cant help you" and then being referred to anoher NS. And he sat both my husband and myself down and told us what we can expect and how this will progress. He couldnt give a timeline of course. But so far he has been right on the money. The numbness I can deal with. I can even deal with my legs going dead every now and again. ( by "dead" i mean i loose all feeling and use of them for a time, sometimes its only a few mins but it has lasted up to half an hour before) My left side is weaker then my right. The pain is what drives me nuts. On bad days I sleep alot. And sometimes I miss days, But honestly when it gets that bad, i would rather sleep threw it. Pain meds along with sleeping pills work sometimes. But I do have those days that the pain is so bad that I cant sleep. My husband handles it well thank god. His only major complaint is that he wishes that there was a way to control the pain better. And the meds make me get sick to my stomach alot so eating can be hard sometimes. The dr told me the pain is caused by the syrinx making my nerves die. Never realized that nerves dying could be so painful. And honestly its a lesson none of us ever needed.
As for it being advanced, I have no clue. I have read up on Sm as much as I can. And everything I have read besides it being so long it dosent seem like it would be "that advanced" to me. It is only 8 or 9mm wide at the widest part. But I am also tiny so the dr said that even though it dosent seem that wide from everthing I have read, it is very wide for me due to my size. In my neck it is almost touching the sides of my spinal cord. And I do know that the location of the widest part has my drs concerned. Something about the c spine and being able to breath on my own.
I have tried physical thearpy, massage thearpy, and a few other things. My back muscles are always tight, they never fully release. And they spasm alot.
I stay positive, They have no clue when my time will come, and I plan on living a long life. Drs can be wrong sometimes too, they are only human like the rest of us after all.
I am hoping that your surgery works out well. I found this site several years ago when I was dxed with SM. And i stopped coming to it. And for some reason I decided to log back in and read what others are going threw. It helps to know that I am not alone in this, But at the same time I hate knowning others are going threw the same things I am.