After decompression and back to square 1

I’m feeling those feelings of desperation again, so familiar! I officially got the brush-off today from my surgeon. After 5 months of recovery I’m still experiencing headaches. My surgeons office emailed me that my pain is not from the Chiari (agreed) and I may indeed have a “neck problem” but I must find another doctor to pursue that. So back to looking out of state for help. My PCP doesn’t understand what a Chiari is, nor does the cooky neurologist I’ve seen. I think my problem is a cranio cervical instability, or at the least a cervical instability. I have to start this whole process again. find a surgeon, send imaging, wait for appt, buy plane ticket, hope for the best. Ugh!!! I’m also now worried about the hit to our savings, not only does this physically suck, it sucks my money too! There’s a part of me that just wants to give up here and start taking pain meds for the rest if my life, but I’m going to miss out on things that healthy people have: having children, running (I used to run about 25 miles a week), and just my plain 'ol vitality that I was born with. I know I’m not the first person to have to go another round and I know my situation is not life threatening- it could definitely be a lot worse, but I’m so frustrated and upset right now.

Right now there two surgeons/ facilities I’m considering: dr Henderson in MD, or TCI. Off the cuff dr Henderson sounds better to me but then I’d have to meet a much higher insurance deductible to be treated by him. My husband is going to flip out! Aside from that, if I am a candidate for another surgery I don’t know if my employer will allow me more time off again. I feel bad for the negative venting but I need to get this off my chest.

I hope everyone is doing well today, Jenn

Who was your Surgeon? was it Dr. Heffez ? send me a message :). Dr. Henderson is great so is TCI but I am in the same boat. Right now we cannot afford either place and your story sounds like mine. I can send you my number we can talk . Please send me a message.

Liz, I’m sending you my phone number