Hi everyone! My daughter and I are so excited to possibly, maybe, hopefully, have figured out her two year nonstop headache! She is 20 years old. When she was 3 years old she had an MRI with and without contrast done and it showed “borderline Cerebellar Tonsillar Ectopia”. No dimensions are mentioned. I just discovered this report in her medical records that I reviewed this last weekend and from doing online research I am finally understanding it and it’s impact on my daughter.
For two years she has had NO relief from her headache that neurologists call “migraine without aura”. She has tried 44 meds, been hospitalized 3 times for five days each time and been pumped with harsh drugs that collapsed her veins, had an occipital nerve block, 30 injections of Botox which made her sicker, and basically spent 2 years in her room in pain. No pain medicine has been given to her for two years. I didn’t know I had this MRI record but when I visited each of the neurologists with my daughter, I would tell them that when she was 3 years old the doctor said that she had a malformation that could be causing headaches. We even saw the original neurologist for 2 years beginning in 2014 and he apparently didn’t review his records from 12 years earlier.
I feel that her borderline MRI, headaches, scoliosis, and sleep apnea add up to Chiari I. She has also developed pain in her shoulder and tingling down to her pinky finger. This had just been dismissed by her primary care as a pulled tendon and hasn’t been mentioned to a neurologist. Not sure if this is related as it is pain in her shoulder mainly. Could it be?
We are literally excited just to have a name!! Let’s not even discuss that since 2014 no MRI has been done with contrast so this could have been seen. Four neurologists have just been happy with ordering an MRI and looking for a tumor. Her latest neurologist might be getting close to figuring it out as he has ordered a spinal tap on April 15th. However from what I am reading that spinal tap could do more harm than help. Does anyone have an opinion on a spinal tap if she has Chiari I? Tomorrow I am going to start begging for an MRI with contrast. Can someone please give me the exact name of the MRI I am begging for? Plus…does a Cefaly machine help Chiari headache symptoms? I am on week 3 of fighting to get authorization and an Rx for a Cefaly machine. I have been there all along advocating for her but didn’t know it would take me to crack the case! So glad I found this forum! Thanks for listening! Barb