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...
4 comments:
<i>I got a call today from my neuro's office wanting to schedule me for my "spinal tap" before I start Tysabri.</i>
They still do those!? I thought that it had gone the way of mercury infusions and blood-letting!
I remember my spinal tap....similar experience! I also ended up in the ER and had the blood patch done, and although I don't have tight spaces....I have just a slight curvature, so after poking for a while they had to reschedule me to come back in and do it with the assistance of a xray machine. I too have said never again and with the recent problems with my liver function, this is NOT good news (as my Neuro in Seattle has talked on a few occasions about switching me over to Tysabri). As if I was not skeptical of going on this medication as it is (the whole PML thing)...but the idea of another spinal tap before you can take the meds....not looking forward to that!
I wish you the best of luck and hopefully your doc will have better success than the previous doc. You will be in my thoughts and prayers that everything goes okay and that you start to feel better! Take care of yourself.
Jaime
I can't say that my spinal tap was a horrible or scary procedure. I can recommend the doc that did my spinal tap without hesitation. Before the procedure, I told him he had one chance to do it right and he had less than 10 minutes to do it right. He complied with my wishes and afterwards told me I had the perfect spine for a lumbar puncture. I replied, "good thing, but don't think you are getting a second go-around with me."
I hope all goes well with your next tap and that you will never experience a repeat of your first ordeal. It is bad enough that with MS you have to be poked, stuck, etc. on a regular basis. It is really bad when you have techs, doctors and nurses who really don't care or understand the pain that they sometimes inflict on us because we have to be poked, stuck and etc.
Good luck to you my friend.
Oh can I just say damn, damn, damn? I'm sorry for the expletives (did I spell that right?), but like you, I am SPINELESS when it comes to spinal taps. My first one, like yours, was a disaster, and I think I hadn't cried that hard in a long, long time. My Dr. DA called it a 'dry tap'. Hmmm...never knew those existed!
I'd opt out of any more spinal taps unless it's done by a very good anesthesiologist. Thats the ONLY way I'll go through that again. But then again, I'm sort of lucky....lol, if you could call it that. Spinal taps mess with my Chiari...so no more is the word from my current doc. Yayyy!
Sorry, this was supposed to be YOUR rant, and I tried to take it over. Ughh...I just want to talk about me, me, me. Can you tell? lololol
I'm thinking of you...wonderin' how your doin', and hopin' its not so hot there.
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