Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.
Here’s a copy of the mass email I sent out to friends and family last night:
I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)
The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure. She said I had “high symptoms”, so we go in expecting my CSF to be high. Surprise, it was low. Lower than it has ever been. (this was my 6th LP). She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better. The more she removed, the worse I felt. my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous. So she put back in all the fluid she removed, and started adding more. 5cc’s at a time. She ended up adding 15cc’s extra. (they said that’s a lot)
My pressure went from 15 to 21.5. Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.
So right now, I have been taken off all meds that might lower my pressure. I have to drink a lot. (I think I already do, but she said more!) Trying to keep my pressure up without having to do more patches.
I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding. If it drops after that, I’ll be seeing Dr. Gray again. She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had. One from November 24th, 2010, the other from August 22nd, 2011. She said there were no real new leaks, the leaks came from the same places. I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak. Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high. She said she saw 2 spots she knows she would want to patch if my pressure drops again.
Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her. That would put a bit of a kink in a trip to Tucson.
So I will drink many fluids, and stop avoiding caffeine so much. (caffeine can raise your pressure)
Thanks for all the healing thoughts today, I felt them all. Really, I did! I think it’s amazing that so many people were thinking of me at the exact same time! How Awesome!
One last thing Other than my back hurting a little, I feel great!
That’s how the email ended…then later that night…
The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.) It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.
Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.
Found a cool article about it…it starts out “A decrease in cerebrospinal fluid pressure may result in an endolymphatic hydrops ….” Well, that’s interesting. The case study isn’t like my case, but it’s interesting just the same.
Now, let’s move back to my first arrival at the hospital…
When we arrived to check in we were told I had an appointment on the 17th, but not the 11th. Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner. The person at the check-in desk got on the phone, and we stood there and waited. I started to cry, but think I hid it well. She asked us to wait in the waiting room while she tried to find something out.
I broke down. I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back. I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else. I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope. (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)
Finally, they said I did have an appointment, but Dr. Gray was running late. Very late. My appointment was at 3pm, and they didn’t get started until after 5pm. (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.) But at least I got in there, and I know something now!
I’ll share with you the first doodle I did in the waiting room: