Feeling Discoiraged

So I recently submitted all medical info to a very difficult to get neurosurgeon. He reviews your case & either refers u to a neurologist or fellow neurosurgeon he feels more appropriate to your condition. If he does choose to accept you; it means he feels your condition is severe enough to require his expertise. I spent 4 days praying he’d refer me but i got the call he wanted to schedule an appt. Now im scared. I just wanted this all to go away. Mow it seems im in for the long haul.

Thank you guys for the support. I think all this is so much more difficult bc in april i made the tough choice to leave behind my family, friends, etc in arkansas & move to boston w/ my fiance’. Ive already allowed my world to be flipped upside down & i was already barely hanging on by a thread. I know this may sound childish is but since my hospitalization & onset of having seizures; sll i want is my mother. I honestly just want to be back n the warmth of my family. My fiance’ is amazing and my rock & i wld never leave him but the whole new life plus this recent diagnosis is too much to bear sometimes…oh & being constantly n pain. I do hope the dr addresses that when i go to my appt oct 6th. But im so thankful i found u guys. Just being able to express my thoughts without bias in itself is so comforting.

So when u say stress is bad for us; how exactly do u mean? Does it just make our symptoms more difficult to handle or does it actually hv a physiological effect on us? Im a nurse & my job is always high stress & im beginning to notice my pain,poor balance, double vision getting worse.

Sarah, stress can exacerbate our symptoms. For me the pain and dysautonomia symptoms get worse when I’m upset or stressed out. I am glad you are going to see a NS with a good reputation. If you decide to have surgery you want the absolute best NS you can find. Ask him about his statistics with decompression: infection rate, CSF leak rate, average level of pain his patients have long term, does he screen for Ehlers Danlos Syndrome/hypermobility, and subsequently cranio cervical instability?

I can see why you are especially missing your family, so sorry. Hang in there Sarah :slight_smile:


Really?!? I was afraid to go back to AR bc i figured there wldnt be any chiari specialist down there. However, im excited about the one i hv up here. Lord, im nervous though. All these questions i need to ask that i never considered. Sometimes just trying to take it all n gives me dizzy headaches. Im trying to focus but at times i just hv to close my computer & forget about it all.