It's my Achilles Heel. It's the one thing I medically fear. I'd rather have my eye poked out (I think). I'm talking about the dreaded SPINAL TAP.
I got a call today from my neuro's office wanting to schedule me for my "spinal tap" before I start Tysabri. I had assumed my whining and begging I did with Dr. She Who Will Not Be Named had already removed me from the "tap" list...she HAD rather promised me this exclusion a few months ago.
But it seems the drug company who makes and distributes Tysabri has another thing in mind...they have their own protocols...they don't allow exceptions...they won't provide the drug to someone as spineless as me unless I "comply".
My very first spinal tap was a disaster. I was told after 45 minutes of digging around in my back that I had "tight spaces"...I won't even go there! And after 45 minutes of nearly passing out, my "tap" was completed. But this was NOT the end. Oh no...nothing could be THAT simple!
I spent the next 3 days flat on my back in bed. Every time I sat up, I got a horrific, pounding headache. The neurologist at the time (I shall fondly call him "Dr. Dumbass") neglected to tell me this would not be a normal response to a tap under any circumstances. I, instead, just layed there and suffered until I couldn't "suffer" any longer.
I finally ended up in an ER with a blood pressure 210/110 from the pain...they move you right into a room with a pressure like that and there was no wait! I had a very kind ER doc and anesthesiologist who told me I would need to undergo a "blood patch" to make the pain go away. It seems all that digging in my tight spaces (I still have no idea what Dr. Dumbass was really trying to say!) caused a leak in my spine and this was causing the headache.
So, I consented. I was re-tapped again. They withdrew blood from my arm and shot it into my back. The pain went away instantly. I became determined to NEVER have this test done again as long as I was able to scream, "NO!"
I'm scheduled to get another spinal tap...I don't know what came over me to consent to this. I've heard "on the streets" Dr. She Who Will Not Be Named is the best in the biz when it comes to finding a spine in someone so spineless as me. The doctor who coordinates all of the regional trauma services in the PacNorthwest has publically said a few years ago HE would see Dr. She Who Will Not Be Named if he needed a neurologist. Dr. SWWNBN brags about her skills to me...I can only assume I'm in good hands. I can only assume she'll be able to get into my "tight spaces".
So far August is NOT looking like my best month. I've got the guided tour of my colon next week and the search for my spine the week after. Everything will be pretty much fine-tuned, replaced, charged up, refilled, or removed by the middle to end of August...just in time to start Tysabri.
I'm really not worried about Tysabri killing me...I'm more concerned the tests to GET to Tysabri might...