I do belong to a private group on FB but I am not on there that much,,,,I spend the majority of time here as it was here that I got my answers and there is less drama then on FB.....
Thank you for your input. I will update here once I see the neuro surgeon. Are you part of other forum or FB group? I would like to join.
The syrinx you have appears to be quite small.....I am not sure what other testing they may do, especially if they feel it is congenital or even idiopathic....
They may decide to monitor it....a syrinx by itself is not easy to treat as they are so small, the stents and shunts are too large to work well for them....for those with Chiari, the decompression surgery helps the syrinx shrink most times post op....
You may want to address the symptoms, in that if they feel the syrinx is too small to cause symptoms, ask what then is casing them since this is the only thing found so far.....
Contrast will only help them see more detail....and the NS may want one...so wait to see what they say....
Ask how you can ask questions once you go home after your visit as that is when you may be able to formulate some.....many of us are like a deer in headlights during a visit....
Expect that you cannot be prepared for what the Dr may say....stay open and relaxed as much as possible...take someone with you to help hea all that is being said....
Good luck
Thank you. I am going to see Neuro Surgeon on Wednesday, what questions should I ask him. Like I want to know what could be the reasons for the syrinx, I also want to know what can be done for it. I want to run more tests to find out the cause but I am not sure if doctors are going to be open to that. Do you have suggestions or pointers as to how I can handle this appointment. Also I forgot to mention I had MRI without contrast only, I assume I need one with contrast to rule out tumors. Can I have a tumor without significant symptoms? I would really appreciate any advice or suggestions you can give for meeting with Neuro Surgeon. Also if you have thoughts on what I should expect him to say.
I took a look at your MRI and you do not have herniated or low lying tonsils.....I can not say if you have Chiari based on that as I can not tell from a MRI if your cerebellum is of the right size....but you do have plenty of room in there compared to many other MRI's I have seen.
Unremarkable means nothing is present....
I have now also uploaded photo of my c spine and syrinx on my profile. When the report says posterior fossa is unremarkable may mean it is a little crowded but not too much?