Hi everyone! I am hoping by joining this community that I can learn about resources and information that is out there on Chairi Malformation. I have not been diagnosed with this yet but feel whole heartily that this answers the questions to so many mysteries for me. I have suffered from migraines since about age 7. My story is like so many others on here. I have suffered from so many things. I ended up having my first surgery just after turning 19 for a bulging disc in my lumbar. From there on it has all been down hill. I have been told by several doctors that I could not have numbness and tingling in my arms and legs at the same time. I have been told by a couple doctors that I needed to look at the psychological side of things and that it was in my head these symptoms. I have had stress test, heart caths, wore halter monitors, been hospitalized 6 times for A-Fib, multiple miscarriages, etc. I have to carry a list of medications, surgeries, and diagnosis that I have been given so that I do not forget. I have a friend who has had similar symptoms and she has been given the Chairi Malformation dx. Over the last two years I have gone down in health. I have problems with focusing and will lose track of what I am saying very easily. I sleep in a recliner more than in bed because I wake up in less pain that way. I lost 126 pounds with gastric bypass and still was not able to come off of the sleep apnea machine. My twin sister was able to stop using hers. I have trouble with balance and I could go on and on. I am going to see a neurologist on Thursday morning and my friend is going with me. She has no doubt either that I have this condition. I need answers and I need to know that I am not just some mental case. I also need to know the answers because my daughter is now under the care of a neurologist for headaches. She has had the migraines for the last two years. When we follow up with the doctor for her I am going to make sure she goes over the MRI with me and I want her to look specifically for the Chairi in my daughter.
The images that I have attached are actually from an MRI that was done in '08 when I went to the ER thinking I was having a stroke. I have recently seen the doctors notes and was shocked. The doctor said in his opinion that the cervical MRI was and I quote: "Abnormal MRI of the cervical spine without contrast. T2 hyperintensity seen centrally at the C6-C7 level, most consistent with small enlargement of the central canal vs syrinx. This measures 2mm in overall diameter." There has never been a mention of this to me and I only found out by tracking down my medical records. The other image reports on my Brain scan said, "Incidental note is made of signal abnormality located centrally just retro/posterior to the dermis of the cerebellum seen on the sagittal images. This is clearly identified on the axial image and it thought to represent a flow related artifact. When this is compared to the MRI of the cervical spine of the same date, this is more clearly identified and does appear to be related to flow than actual mass or tumor". "There is a mild enlargement of the pineal gland to the measurement of 8mm which may represent a small pineal gland cyst."
I was shocked to see these on the reports that were sent to my primary care doctor.
Struggling in oHIo

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