Hello everyone. It has been a few weeks since I have posted, so I wanted to give a general update about my situation. I recently had an appointment with a neurologist about an hour away from where I live. Surprisingly it was a good appointment. On the downside of things the NL was unsure why I was seeing him, and not the NS straight away. He thinks I would be a candidate for the surgery, but I need to find a new NS because of my insurence. I managed to get that done and now have an appointment with a Dr Perry Ball, and I am starting to get nervous. The NL warned me that even if I have the surgery I may not get better (concerning having feeling in my left arm, head, and chest) and that I would have to discuss it with the NS. Has anyone else had CM with SM where they lost the feelings of hot, cold, and pain in their extremities? Did you have the Posterior Fossa Decompression, and did it get better? Also the NL thinks I have complex partial seizures, and not petit mal seizures. My NS appointment is on the 30th of this month for my consultation, and I planned to be wed in May. I don't want to push off the wedding, but I am not sure if I can push off the surgery. Thanks everyone for taking the time to read this!
Joker
If you look at your MRI with all that major structural problem, you definitely need surgery, or you'll never know. Most likely, a lot of your sx. will be helped by it. I would schedule it at a time after your wedding. Who needs that stress just after surgery. It'll all be a good thing for you, so wait to talk with the NS later.
I'm not feeling too well today, so just wanted to say this and bump it up to the top for others to help you
Geoff
Thanks for the reply Geoff, I appreciate it. I felt the need to vent here about it because it is very stressful, and it seems to be getting even more so. Lately more than before. All these doctors just make it hard going through this because they can't hide how they feel about the condition I am in. I remain optimistic, or try my best to in this situation, but as the days go by my head feels even heavier. Today I just found out my appointment at the end of the month is with not just the one NS, but 2. The other being a Dr. Jennifer Hong. That adds to the stress and worry. I hope you are well though Geoff (or as well as can be) and get better! Good luck!!
Joker, statistically most people get improvement of their symptoms after surgery. Every person is different as to what changes and what improves. I think you should not change any of your plans just yet. See the NS and discuss the urgency of surgery then. Also, during your visit with NS, please bring up CCI and question if you have a sharp clivo-axial. Are you hypermobile? I can’t remember if we’ve gone over that or not, so just making sure :)Thank you for checking in.
Congratulations on the upcoming wedding!
Jenn
Ps did you ever find out about the possible tumor?
Jenn, thanks for replying to my post. I have not had any testing done yet for hypermobility, but I will make sure to bring that up to the NS along with the sharp clivo-axial part. What do you mean CCI though? Also to adress the other part of your question, I did another MRI with contrast this time, and a tumor was ruled out which is great. Talking to the doctors lately has made me feel a bit more nervous about the surgery, and that has made things a bit more difficult. I see the NS in 10 days for my consult, and that's the other thing. My appointment is with 2 NS, not just one. That also worries me lol! Anyone else had their first consult with 2 NS?
Hey Joker:
Jenn did a recent post on CCI, Craniocervical Instability, and check the video out here:
Don't worry about the 2 doctors, it's common, and if you're armed with good info. and questions, it'll go better for you.
Later and Take care,
Geoff
There were two in my initial consult too 
yes, thank you Gag for copying that previous post here!
People who are hypermobile/ have Elhers Danlos Syndrome are susceptible to cranio cervical instabilities. Dr. Henderson has said that he believes 30-40% of decompressions will fail due to untreated CCI. The symptoms for CCI and Chiari are very similar.
Not all chiarians are hypermobile, and not all hypermobile people have CCI, but you should know just in case! You can google the Brighton test and the Beighton test. I believe they are the accepted alternative way to diagnose hypermobility without having the expensive genetic test done.
Jenn