Hi all, first I want to thank you for all the posts, questions, answers, testemonials, ect. Just reading the information that's been posted has helped me understand better what I am dealing with. I was dx on July 3, 2 days after my 43rd bday. I've had so many health issues for so long and no one ever connected the dots until I asked about getting an mri done for Chiari. A little background, my now 29 yr old niece had decompression surgery about 4 years ago. She's had that horrible barking cough her whole life. (So have I). Her mom, my sis, kept telling me I have Chiari too and I need to get checked, I just blew it off, till one day in May while looking up some health articles to send out to staff in a newsletter, Chiari Malformation shows up in the google search. I start reading the symptoms and started crying at my desk because I hit every single symptom. So off to the dr, get xray, comes back normal. Ask for mri, she sends me to neuro. I tell him about my niece and he says yep, that's what I was thinking. MRI came back with a 7mm herniation. My BF and 20 yr old daughter went to see NS (Kaiser - Fontana CA) Dr. Goldenberg and he is suggesting surgery based on my symptoms. I've had clinical depression for 15 years (dx anyway) treated with meds for the last 8 years without interuption, RLS, tinitus, my vision has gotten worse, sleep apnea, I'm lucky if I sleep a full 4hours a night solidly, trouble swallowing, coughing with the most intense. makes you pass out headache, and now more prevelent in the last 6-12 months the shakes, almost like my Gpa that had parkinsons. I can't stretch or laugh too hard without my head feeling like its going to implode and I have constant loss of bladder control ( even b4 I was pregnant at 22) and I am having progressively worse time speaking, getting tongue tied (is this related or stress related) and I have to talk a lot for my job!
Having seen my mom and sis go through this with my niece I am more afraid to tell them than I am of having the surgery. Is that crazy? I had finally got up enough nerve to tell them last Sunday family gathering, but my same niece had a seizure, so I didn't because I didn't want to add to their stress. Did anyone else struggle to tell family? Does anyone have family members that have Chiari? They say its not hereditary, but I think otherwise.
Ok, so I haven't really had anyone to talk to that understands this as much as you all here, so thank you for listening and any advice would be very much appreciative. Sorry for running on and on.... :)
My BF is very supportive and we are committed to each other and he's been there for me trying to figure this all out over the 3 years we've been together. I thank God every day that I have him to support me.