Hi Meggie! First, I am sorry you are going through everything that you are. I can relate to you in many ways. I was diagnosed with syringomyelia in Dec. of 2010 when they found a syrinx in my spinal cord at C-5,6,&7. I won't go into the long history of symptoms leading to the MRI that finally found the problem, but I was so relieved to finally get a diagnosis besides "migraines". I always knew something was wrong with me and I was so tired of living in constant pain. Once I found out what was wrong though, I can't say it was such a relief anymore.
My syringo is also idiopathic as far as anyone can tell. I do not have Chiari 1, no trauma, and no tumor (although they did find a small benign tumor at the base of my brain, it is unrelated). After many dr's have consulted on my condition (all baffled), they first tried laminoplasty in the cervical area around the syrinx. They pulled those bones apart & bolted them back together, trying to leave more room for the CSF to flow. They also performed duraplasty at that time to replace part of the dura in that area with an elastic patch to give more stretch. When my NS performed the operation, he found a ton of scar tissue in there that he believes was left from a severe case of undiagnosed spinal meningitis as a young child. If this is true, it could very well be the cause for my problems now, but no one knows.
Anyway, these operations did not work at all. The syrinx was still there and my cranial pressure (which was causing my tremendous, unbearable headaches) was still up. Whatever problem I have that is blocking my natural flow of CSF and causing this to reroute to the spinal cord is also causing it to build up on my brain. Because of this, my next operation was to have a VP shunt placed from the brain to the abdomen.
The VP Shunt is just to help my severe headaches and to decrease the pressure in my head. It really isn't expected to do anything for my syrinx, of course. My NS and the others that have consulted on my case have all said they want to stay away from any shunt directly into the syrinx because going into the spinal cord is so extremely dangerous. From all of the reading and research I have done, I definitely agreed with them. I felt that I would rather wait out the slow progression of the syrinx itself, than take any chances on damaging the spinal cord during an operation.
Well, that is my story (most of it, anyway). Now I am curious about your condition. Why did your NS decide to go with the syringo arachnoid shunt? Where is your syrinx located? I know how horrible it is to live with this constant pain all of the time and for me, no one can really understand. First of all, no one understands the crazy disease in the first place, and then most of the time saying you have headaches & muscle pain sounds like you are just a complainer. People just don't realize how much deeper it is than that. There are times that my neck & shoulders are so stiff and in pain that I can't even move. My head will hurt so bad along with that to where tears flow without me even realizing I am crying. Then I get shooting nerve pains down my back, arms, and hands that feel like I am being stabbed repeatedly. At times my right hand will just cramp up and stop working completely. I also feel so tired and lethargic all of the time...every single day of my life. I might get bursts of energy, but they are very short lived.
Gosh, I am so sorry because I feel like that just turned into a venting session. It's been a loooong time since I have "talked" to anyone or complained because I know people around me don't want to hear it. I am a single mom of 2 amazing angels (5 & 8 years old) and even with all of this going on, I have to soldier up everyday and move on...gotta take care of them and go to work!
Please let me know how you are and more about your condition. I go back to my NS on Tuesday to check on my shunt because I have been having some soreness and worse headaches so I think I might need an adjustment. I am here to help you in any way I can and will answer an question you might have. There are so few of us and so few people to talk to.
Best of luck to you and I'm not sure if you are spiritual, but I am so I will pray for you in my way if that is ok.