thank you so much for sharing your story. You are in my prayers. Im 28 going on 29 and I have chiari malformations, psuedo tumor cerebri, PONS, myofascial pain syndrome, neuralgia, fibromyalgia, depression, anxiety and much more. Its horrible the way we get treated by doctors. I am sending you positive thoughts and prayers!
thanks for sharing! I am 48 Yrs. old and had Chiari surgery 6 Yrs ago but now I found out I've had craniocervical instability with retroflexed odontoid with pannus build up, it's pressing on my brainstem causing it to curve! I've already seen 1 neurosurgeon who dismissed it because it wasn't on the radiologist report and neurologist who dismissed it along with my pain management doctors because it's not on the reports! I am seeing a Chiari specialist neurosurgeon in January to finally get help.
Merci pour le partage.
Notre fille de 5 ans a été diagnostiqué l'an dernier.
I feel your pain....EDS, Chiari, Syringomyelia, MCAS, Dysautonomia, IC, IBS, chostrochondritis, etc, etc, etc. I've had 3 decompression surgeries, lower back surgery, fusion of c5,6,7 to stabilize my CCVI, but hasn't. In my experience, take it one day at a time and KNOW your body and its conditions because most likely you'll be educating your doctors. I live in Milwaukee, WI so if you're looking for some doctors, I've got some recommendations.