Hey,
I'm Jennifer, and I've had severe severe Migraines since age 1. I'm now 38. I never knew the root cause even though I have been treated by many neurologists throughout the years. I get botox injections ( a life changer) and have a Cefaly (also highly recommended), and take daily meds.
January 2nd of this year I had a horrific fall down my stairs and cracked the back of my skull on every step on the way down. Ever since i stood up, I have had horrible tremors all over my body, and several other awful health symptoms.I quit breathing on several episodes, and went to the ER, ND on my birthday was diagnosed with Chiari. I was aware of what it was as my grandmother had it. I always asked doctors to check for it, they always said I didn't have it, well. ...I do.
I was sent to a neurosurgeon of high regards, and his recommendation was not to have the surgery, that he felt the risks outweighed the benefits. But I am now jobless, and miserable. I am in and out of the emergency room very frequently. He is sending me on to a specialist who also handles movement disorders, for possibly a DBS, or something of the likes.
I am so lost, confused, miserable, financially drained, I am a single mom of a 5 year old, and this is a terrifying experience. I'm so at a loss I feel like this board can help me. This condition is rare, and you can only green the basics through research. I don't know what's ahead for me.
Thank you for your time,
Jenn
Hi, Jennifer.
Welcome to our community. I am sorry you are having such a hard time. Please search past discussions and access the Chiari Info for Members tab above. There is a lot of useful information. If you have questions or need to unburden, many here can share experiences or relate as well, just post a discussion. Let us know how the specialist visit goes. I hope things turn around for you soon.
Hugs,
Laurie
Well, thank you for your reply. Actually, I now know I have a traumatic brain injury from that fall, in addition to the chiari malformation. I'm simply happy to know what is wrong with me. I will be going to a neuropsychologist for treatment for the brain injury soon, and be on my road to recovery, as well as get disability after this 6 months of limbo, and struggling. I have now, TWO new diagnosis and so much to learn, and how to figure out which issue causes which symptoms is all very confusing.
It's VERY overwhelming, to say the least, and with my deficiencies from the injury, it makes it harder to comprehend. Seeing here, that I'm not alone, has been comforting in and of itself. As, of course, no one I know has anything like this. My grandmother had chiari, but she has passed away years ago, and never sought treatment.
My caretaker is having a hard time as well, but solid as a rock, and for that I'm grateful. I do have a positive, fighting outlook, and laugh at myself rather than get upset. I'm glad I can have that sense of humor and make it through the day that way. It helps immensely!
*love to all* stay strong!
jenn