The nurse from the neurosurgeon's office finally called today. The results from the CINE MRI show that my CSF flow is blocked on one side. The blockage is moderate but could still be causing me problems. I don't understand this because it seems to me that if it's blocked at all it can cause problems.
Anyway, due to my symptoms and the fact that there is some blockage the NS wants to meet with me and talk to me. They aren't sure that surgery will work for me since I am apparently in a gray area where it could go either way. She said that he would do some tests in his office and then talk about other options.
Frankly, I am not interested in hearing them. I'm sorry, but the list of things that I have tried is a mile long. Someone on one of the Chiari boards told me that I needed to give them time to work. I'm sorry, but how much is enough time? Some of the things I tried for years. Isn't that enough?
I am going to go meet with him and see what he has to say but I am starting to feel like it might be a waste of my time. I keep hearing over and over again about how you have to see a specialist but so far I have not been impressed with my experience. I can only hope that once I meet with the NS in person that I'll walk away with a better feeling. Right now, my experience has been based on miscommunication and secondhand information so I don't actually have anything negative to say about the NS himself-just the runaround I am getting when it comes to seeing him.
The bottom line is that my flow is blocked and that could be causing my problems. Or, it might not be. I am supposed to have all of the related conditions looked into such as cervical cranial instability, syringomyelia, and tethered cord syndrome but so far nobody has been particularly worried about that. I hate to keep calling my PCP's office since they know my voice now when I call but she's the only one who seems to be able to get anything done.
Anyway, due to my symptoms and the fact that there is some blockage the NS wants to meet with me and talk to me. They aren't sure that surgery will work for me since I am apparently in a gray area where it could go either way. She said that he would do some tests in his office and then talk about other options.
Frankly, I am not interested in hearing them. I'm sorry, but the list of things that I have tried is a mile long. Someone on one of the Chiari boards told me that I needed to give them time to work. I'm sorry, but how much is enough time? Some of the things I tried for years. Isn't that enough?
I am going to go meet with him and see what he has to say but I am starting to feel like it might be a waste of my time. I keep hearing over and over again about how you have to see a specialist but so far I have not been impressed with my experience. I can only hope that once I meet with the NS in person that I'll walk away with a better feeling. Right now, my experience has been based on miscommunication and secondhand information so I don't actually have anything negative to say about the NS himself-just the runaround I am getting when it comes to seeing him.
The bottom line is that my flow is blocked and that could be causing my problems. Or, it might not be. I am supposed to have all of the related conditions looked into such as cervical cranial instability, syringomyelia, and tethered cord syndrome but so far nobody has been particularly worried about that. I hate to keep calling my PCP's office since they know my voice now when I call but she's the only one who seems to be able to get anything done.
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