Posted 11/4/2008 12:25 PM (GMT -6)
Thanks for asking, Kara.
I did get a blood patch. They did it under flouro & everything and I was very hopeful. The next morning for several seconds I got a pounding headache & everything turned red. Weird, right? Then the headache was totally gone.
Unfortunately, it came back a few days later. No one is sure what's going on. I had surgery for Chiari 6 years ago & have been asymptomatic ever since, but it seems like it has somehow returned. I read a study from Sweden (my heritage) that said air bubbles can sometimes spontaneously form in people with Chiari & that could cause symptoms to return. Maybe the air bubbles from the epidural somehow instigated that. I'm hoping that's it because otherwise we really have no idea.
I have a Spinal Cord Stimulator so I can't have MRI's. An MRI would have been the easy way to figure out what's going on. Instead, my doctors (PM, PCP, ENT, neurologist & MS) spent the past week & a half arguing with each other & not getting anything done at all. The ENT said everything looked okay from his perspective, but that it sounded like a neurological problem & that I should talk to my neurologist. I'm switching neurologists tomorrow & hope that will bring some answers. The last neurologist was crazy & basically told me that he was refusing to see me b/c "life is full of pain but we just have to suck it up & be happy". That would be ridiculous enough if I were only complaining about pain, but I have severe vertigo & nausea, blurry vision and am getting my letter sounds mixed up in both my speech & hearing. His nurse was quite concerned suggested maybe I should go to the ER. That makes no sense b/c the ER will just call in a neuro consult. The neurologist would declare me stable & tell me to schedule a follow-up office visit where they could review my history & chart. Why would I go through all that for nothing when the old neurologist actually had an appointment available for that same day but refused to see me?
I know this isn't life or death, but it's not fun to be in pain & it's even worse that I have to leave lights on 24/7 b/c otherwise the room starts spinning. I could barely afford my electric bill as it was. I don't know how I will cover this month (prob. have to apply for assistance). I hate having to take the bus everywhere. It takes me three hours to get out to some of my doctors' offices on the bus (normally 40 min. by car) and I have to take 5 buses and walk a mile from the last stop at that. I do get some help from people in my church, but they have jobs & are not available during the day. I just want to know what's going on & how to fix it so I can get back to life as usual.
I just feel like this should not be so complicated. I already have a diagnosis. Once we get whatever is causing the swelling around my brain under control, I already know what to do for PT & stuff. I'm just so incredibly frustrated with these doctors right now. Hopefully tomorrow will be a better day & the new neuro won't be as lazy or stupid as the last one.
Hope you have a great day -- I'm off to vote (at least that's just at the end of my block, so no buses required :) yea)!