Short Update- Lessons in the ER

Short update to fill everyone in since some of you have heard through the grapevine or read posts that talk about it...  After leaving work early on Thursday, I spent Thursday, Friday, and Saturday trying desperately to get rid of a headache that would not relent for anything.  Friday I had a procedure that way laid me all on it's own, but I will spare you that story.  From Thursday to Saturday morning I went through all of my emergency medications, all of my "tricks", and all of anyone else's "tricks" to no avail.  By Friday night I was not able to hold anything down, by Saturday morning I couldn't see straight and was unable to walk more that a couple steps without falling over.  I kept thinking if I could get to sleep it would go away, but nothing would let me sleep and the pain was so bad I couldn't stop crying.  By early Saturday evening I knew I was in trouble, and with the Chiari and syrinx untreated, unfortunately I am all too aware of the possibilities of what a severe headache could have meant, so off to the ER we went. ER lesson #1 with Chiari-  Just because the nurse working triage is a co-worker and probably has heard what is wrong with you, and just because somewhere in your chart it says you have this wicked thing in your head, don't assume she knows or will put two and two together.  Therefore, I sat in the waiting room a little bit longer than I probably should have because it finally dawned on me that MAYBE I should mention the Chiari- We won't even discuss the fact that I had handed them my medical alert band when I first got there that says CHIARI 1/SYRINX .  Not that I expect them to know what that means, but sheesh if a medical person doesn't and is in charge or figuring out what care you need, they should probably ask.  (HUGE caveat here- I am confident this was an oversight due to stress because it was a co-worker sitting in front of her and not the norm for our hospital... or at least I will keep telling myself that!!)  So, one mention of Chiari to the second nurse and whooosh, back to a room and an angel of a nurse named Amy.   After two IV sticks, explaining my case- both long term and immediate issue- to the triage nurse, my new nurse, and a doctor, I get Benadryl, Toradol, and Compazine, a very classic migraine cocktail that I have been told very classically does not work for Chiari migraines, although since it has been sooooo long since I have had to have emergency interventions for my headaches, I had hoped the cocktail would magically work and I wouldn't turn into a difficult patient.  ER Lesson #2 with Chiari-  Maybe it's ok to be a little bit of a difficult patient if you know what works for you and what doesn't to help streamline the process!!  Luckily the cocktail did manage to take the nausea away which was getting rather annoying because every time a wave of that came on it made the "icepick in my head" feeling worse, and I am sure Darren was tired of rubbing my back and trying to keep my hair and sweatshirt and arm and IV and O2 monitor untangled and out of my bowl I was clutching and my mom was tired of me snatching the call light away from her so that she wouldn't bother Amy! I am sure my sister is glad she missed all of that fun, as she came late to the party.  So, migraine cocktail down, CT scan to make sure there was no massive change that they needed to be aware of, and I finally get Dilaudid-  never had it before, but it is my new favorite medicine!!  Not only did the majority of the headache go away almost instantly, but my sister claims I went to sleep, or as close to sleep as you can in the ER sitting right outside the main desk with the medic radio blaring away on a Labor Day weekend Saturday night.   So after several hours, more Dilaudid, and a visit from a duckling Neurosurgeon who is my new best friend, I was sent packing home with more meds, and a promise from this new best friend to get on the horn to my neurosurgery team and go to bat for getting me in for my pre-op and surgery sooner than later. ER Lesson #3 with Chiari-  Make friends with the duckling doctors that come visit you, because they can help light fires!   He was actually surprised I had not been rushed in and decompressed by now... lovely, nice to know someone is on my side as far as time, scary to know someone, namely someone well educated in the brain, thinks I should have been in the OR by now.  So, I have managed to sleep most of the headache away, and sleep all of the meds away, and now I am ready to start making a full force push to get into Dr. Pollack's office and into the operating room as soon as possible!!  Thank you to everyone for your continued thoughts and prayers and well wishes, hopefully we will know more soon!!!