I've been gone for a while now and I haven't been having many issues. But in the last month and half I've been having some very bad neck pain and pain in my neck, balance issues, memory issues, I'm having a lot pressure and pain at the base of my skull and some coming up the right side of my head. I don't remember specifically all the symptoms I went through when my Chiari really started coming to light in my 20's. From the symptoms I described do these sound Chiari related or ones anyone else specifically adults here suffer from? And has anyone here gone in for decompression surgery and then had symptoms come back a couple of years later? Any input I could get would be greatly appreciated, hope everyone is well. Megan
Hi there Megan
It is unfortunate that you are experiencing these symptoms. Hopefully, what I have experienced can help you work through your own experiences.
After my surgery, I developed balance issues and new head and neck pains. I also found that my cognitive abilities could be altered by head movements. If I moved too much into range (extension and rotation especially) or for too long (hanging a shower curtain - dangerous to boot given balance issues) I would dim my cognitive abilities for three days. Crazy, but true. Three days. This was my experience though I would highly suspect that it would vary between CHiari folk. What I was told is that the dural sheath of the spinal cord was pulling on my brain stem with neck or body movements - it is all connected - and affecting my cognition. Lovely, but how to fix it. I have done lots and lots of neurodynamical exercises starting at my hands and feet and SLOWLY working up to my head. I have been doing neck ones for just a couple weeks and have been reveling in the sensation of smooth movement and fewer and less sever cognitive dips.
Neck pain I worked on with the neurodynamic exercise I just mentioned and shoulder motor control exercises. I still have neck motor control exercises to do but I have to wait until the cervical dural is more resilient. Trigger releases of surrounding musculature has been helpful while I wait. Exercises for occiput-cervical mobility helped with the pain up the side of the head.
For my balance, I danced with joy when I found primitive exercises that banished my dizziness. I've posted previously about these.
Basically, what I have been told is that these symptoms are like the "soft" symptoms of Chiari. They are highly individual and won't kill you so doctors tend not to get too excited about them. An MRI often shows normal though you do not feel normal. Chiari can be like a brain concussion. It is just slow motion and symptoms can rise up when a person gets busier, sick, injured, more stress, different medication - whatever. A Chiari brain - pre and post surgery- can be more sensitive to stress (I do not necessarily mean the psychological type of stress but that can be a factor as well).
Anyways, good luck to you in figuring things out.
Thank you for your input, I have a doctors appointment coming up to see my urologist to see if I may have a problem with my kidneys or some sort of infection and then after that if I'm still experiencing issues then I will make an appointment to go and see my neurosurgeon yet again which I haven't seen him in a few years because I really haven't had any issues up until recently. So I will see how things go in the next couple of months. But I do appreciate your input and your information I will definitely keep it in mind. I will post here if anything comes up. Sorry for my delayed response, but I appreciate the help, take care, Megan