I’m new to this group and also new to CM 1. Well, new to the dx. I have lived with a laundry list of symptoms for years that have begun to worsen over the last 6 to 8 months. I just completed CINE (??) MRI on Wed. and scheduled to see a neurosurgeon next week. I have done hours of reading since hearing about this for the first time about 2 weeks ago. I am finding myself on the verge of tears; partially because I am glad to finally get some answers and partially because CM 1 is very serious. Since I have not seen a surgeon I have so many questions and the more I read, the more anxious I am becoming. I figured getting the support of others who have firsthand experience would help. I can have the tendency to ramble, may or may not be a symptom of CM 1, so I will try to stay focused. I have so many questions I don’t even know where to start. Since I have not found a lot of research and only a few mentions of this; I would like to know if anyone else has also been diagnosed with enlarged thyroid (or other thyroid problems) or problems with jaw joint (TMDJ)?
I know other people on this board do suffer from TMDJ. I used to have a lot of issues with that myself prior to my surgery but they are not as bad now. Some Chiari patients also suffer from Ehlers-Danlos syndrome which is a connective tissue disorder. TMDJ can be a symptom of EDS so that is definitely something you'd want to be evaluated for before having surgery.
I'm not sure about the enlarged thyroid but I'm sure someone else can chime in about that one!
Best wishes to you!
I have Hashimotos, tmjd, and EDS too. Glad you found us
Thanks to everyone for sharing your experiences with thyroid and TMJD problems. I was just amazed at how fast I am developing new symptoms and wondered if there was some connection. I’m also starting to wonder if there may be some other disorder present. I have researched some of those mentioned in your replies. I will follow up on the suggestions offered. I have not discussed the root cause or diagnoses of my enlarged thyroid with the endocrinologist. When the biopsy results came back clear I wasn’t concerned about asking any additional questions. I was told that my thyroid levels were within normal limits and was never given clear explanation for the enlarging. I have since learned there is some disagreement on what is considered “normal” and should and should not be treated. I am just being monitored for the time being. My first follow up appointment is scheduled for some time in Nov. I am not in a rush to be on medication and fine with the option to monitor and review later. I am trying not to get all worked up about the CM surgery, but just the thought of it really bothers me. I was given a CD of my MRI a couple days ago. I have not looked at it and not sure I will. I figured best to wait and have them interpreted by the medical professional instead of terrifying myself over something that may not be a reason for concern. I am praying these symptoms don’t progress and focusing on doing what I need to in order to live with it. Thanks again to everyone for your input.