@tisme as someone who was diagnosed with Chiari Malformation and Syringomyelia I would recommend that you do mention something to your family doctor and neurosurgeon.

I had surgery 10 years ago and see my neurologist annually to be monitored. Due to the fact you have not had surgery it is important to continually monitor the condition. I journal every day my activities and how I feel physically. It helps to track any symptoms I am having whether it be caused by the amount of activity I did for the day or maybe the weather, as the barometric can affect the pressure inside the head, as I have heard from other Chiarians. The journal is brought along when I have my annual appointment with my neurologist.

I started with hand issues 15 years ago and it was determined 5 years later that what was causing the issues was a very large herniation of my cerebellum which cause a very large and severe syrinx in my spine. I was told it was not a matter of if, but when I would end up in a wheelchair having lost all use of my extremities.

I have built an excellent team of my primary provider, neurologist, orthopedic doctor, hand therapist and massage therapist to help me maintain me physically and mentally. I am very blessed that my primary provider clinic and my neurologist clinic both use the Epic system and they both can see my medical records and tests from both places. Both then should be on the same page and see what is going on with me all around. So both are well informed. There is 5 hour distance between them, but with them both having access, they are more like right across the hall from each other.

There is no cure for Chiari and even if you have surgery it is something you live with every day. Surgery is NOT a cure. It stops the progression and still needs to be monitored.

Hope I was of some help and did not scare you in any way. All the best on your journey.