Friday, May 6, 2011

My Illness

I post on twitter A LOT about my illness. I also get a lot of questions about it and the procedures that I get done. Not that I mind answering the questions, because I don't but I am lazy..I am not ashamed to admit that :P So I figured I would just write this entry and explain what I have and the procedure I am getting next week..see lazy ;)

I have a random CSF (CerebroSpinal Fluid) leak, A CSF leak is an escape of the fluid that surrounds the brain and spinal cord. Basically, my brain doesn't float, it rests on my skull when ever I stand up. Hence why I spend most days on the couch. Lying flat helps to equalize the fluid and provides some relief. I suffer from a constant headache, it is not your typical headache. No medications provide any relief from it. The best way to describe the pain, is that I have a constant ice cream headache but on bad days it is much worse. So now you understand why if you have migraines I call them baby headaches. Nothing personal but I would much rather a migraine.

How this happened..I wish I could say it was something awesome or glamorous like I was fighting Tigers in Africa or Rock climbing but no. I received a bad lumbar puncture (spinal tap) in the ER. stupid doctor ruined my life. Let this be a lesson..NEVER EVER NEVER get a lumbar puncture in the ER. Make sure you have an x-ray guided one with someone who has done them before.

Most people can be fixed right away with a blood patch. A blood patch is a surgical procedure that provides immediate relief to the headache caused by leaking spinal fluid. Approximately 15-20 mls of blood is taken from a vein in the patient's arm and subsequently injected into the epidural space in the spine at the site of the spinal fluid leak.

The blood clots and seals the hole in the dura (the membrane which covers the spinal cord) which stops fluid from leaking out. The procedure is used to relieve severe headaches caused when an epidural, spinal needle, or diagnostic lumbar puncture punctures a hole in the dura.

I totally copied and pasted the info on the blood patch...LAZY..LOL. This will be my 13th blood patch, yah..that is unheard of. My condition is actually extremely rare since I have had it for over 4 years. Doctors are baffled by me. I have extremely low CSF a 3 or 4 last time it was checked..I believe average aka normal is over 15. They don't have a universal normal for CSF normal. Which I think is stupid.

So that is what is going on next Wednesday. Pretty exciting right? hahaha!