Appointment Coming Up With My Neurosurgeon, Not Sure What To Do

Hello Everyone,

I had my decompression in November 2012, and I would like to say that I feel great and I'm cured but I don't feel great and I'm getting to the point now where the people around me aren't wanting to hear me gripe and complain about my problems even though sometimes I'm in a lot of pain. But I've always been pretty tough and been able to handle pain, but not knowing what this condition could turn into in the future worries me. I'm still rather young, being 26 and in rather could health other than the chiari.

I guess a big part of my problem is not knowing how severe my own condition is or if its severe or if its just all in my head. I'm still having problems swallowing, though they aren't every day or every meal, but when the swallow problems occur they hurt and they are very scary, and also because of the swallowing problems I end up having acid reflux because of it and then that causes pain as well. I have periodic times when I have pain in my hands and feet and lately my neck has been really bothering me. I'm not sure if its just the type of peoples I'm using or if its something thats not right.

At the hospital after my surgery I received those little donut type pillows with the wholes in the middle and I've been using them ever since my surgery last November and I haven't been able to sleep without them, if I do my neck does not feel supported through the night, but then I still wake up with neck pain in the morning.

I have been getting even before my surgery this twinging type feelings on the right side of my neck that radiate pain from my neck and up the side of skull, not sure if thats related to the chiari or if that is because of something else, no doctor has been able to tell me. So I guess I'm just searching for some input from others and see if anyone else is experiencing anything like I am and get some insight on what to do to improve my situation or maybe if I should have surgery again, because at this point I don't know what to do.

Any insight would be greatly appreciated thanks, Megan. God Bless Everyone

My NS told me it could be over a year before full benefits are seen. Also due to the great trauma to your neck muscles you will still be experiencing some neck and head pains as they heal. Even though you look healed on the surface there are still things changing inside. My NS does a CINE MRI at 6 months post op to see if the decompression was adequate and to ensure no scar tissue is formed. Mine should be next month! I would ask your NS if he plans to do one.

Hi Again,

Thank you Emma and Anglyn for your responses and your thoughts. I've been doing some reading over the past couple of days myself and found that getting a CINE MRI might be something I might talk to my doctor about when I see him on Tuesday to see if there is any scar tissue that is formed, I think that will be my next step to see what he saids. I might not in a lot of pain and the problems I do have, don't occur every day, which is why I consider it hard, because I sometimes don't know what to mention to my doctor and what not to, because I don't know what to consider bad symptoms anymore. So I guess my best course of action is maybe to just to speak to my doctor and see what he has to say next. Again I appreciate the responses and I hope everyone is doing well and continues to hopefully get better every day

Take care, Megan

Be sure to let us know what he says!

I will, thank you to everyone here for the support, it means a lot. I'll post when I know more.