September is Chiari awareness month and also Intracranial Hypertension awareness month. With that in mind, I'm going to tell you a story that is ultimately about both.
I don't know about you guys but I divide my life according to a timeline of memories. There are the things that happened as a kid, the things that happened before Paul (my hubby), life after Paul, life after kids, events before and after college, events that happened while I worked ICU, life after EDS, etc. Its just how I remember things. And now there will forever be that notch in my timeline called "That Week". I remember very few of the events during this particular week or even during the time directly after. But, I'm going to try to break it down and make a record of it just the same. This will be a combination of things I do remember, things that Paul has told me, things that friends told me and texts and emails that I've went back and read.
"That Week" actually began on Friday, April 25th. This is the last day I truly remember for a few weeks, actually. For a while I'd had symptoms of intracranial hypertension (IH), a comorbidity to Ehlers-Danlos, chiari malformation and all of our other fun disorders. I'd been on medications like Diamox and Lasix for a while but we really didn't know how serious my illness was. I'd never had a lumbar puncture or ICP monitor to actually check. So, on this Friday I was scheduled for one. It was fairly simple. I went in to the outpatient center, signed in, was prepped then put to sleep. After the procedure I was told that my opening pressure was 60+. See, our spinal fluid moves at a certain pressure that can be measured just like our blood pressure. That pressure is usually associated with the volume of fluid or abnormalities that obstruct it. A normal pressure is around 5-15. Anything over 20 can be diagnosed as intracranial hypertension. Pressures in the 30-40s can cause significant damage, pain, headaches, blindness. Its not often that we hear of pressures that are higher than that. Mine was one of the highest that my surgeon had saw and he's done this for 30 years. The tool used to measure the pressure only goes to 60. My fluid reached that mark and kept going so we don't know how high it was. That scared me! He drew off quite a bit of that fluid, dropped my pressures to normal, did a prophylactic blood patch and sent me home.
That night I was fine. I was cautious with my activities, used my hated wheelchair. That night we stayed at the motel (my surgeon is in another state) and the next day we traveled home. I don't remember the trip home or much after. Paul says that I started acted odd that morning on the drive home. He says that I slept a lot more than usual and was a little "off". He thought it was a result of our trip and all I'd been through. According to him and verified by my texts to friends that I've read, I was "off" all weekend. I slept almost the entire weekend. When I was awake I cried with a headache, I talked out of my head then I slept some more. If you know me, you know that I don't sleep until I have to. My phone shows that I texted and emailed my surgeon on Sunday to tell him that I had the worst headache of my life and that I was hallucinating. Still, we tried to wait it out and see what was happening. Maybe it was low pressure or a spinal leak, maybe my body was learning to adjust to new pressures.
Then Monday came. Monday was one of those days that changes your life. I remember a few things. Paul had to go back to work that morning and left me with my oldest daughter. I woke up very early with an even worse headache. This was a 12 on a scale of 1-10. I felt like my head was being clamped by a vice and crushed. I remember that. I remember taking strong pain killers and getting no relief. Then the vomiting started. I took Zofran and it didn't help. I knew something was very wrong. I woke my daughter and made her come sit with me. She and family has helped me fill in the blanks from this day. She came in and sat with me. She made me oatmeal and tried to feed me. Apparently she couldn't keep me awake. I kept passing out, over and over. At some point she snuck off to call her dad and tell him that something was very wrong. He said he was coming home to get me, we were going back to my surgeon and the hospital. My daughter got me up, helped me get to the shower. After, she brushed and dried my hair for me. She packed my suitcase for me. Just thinking of that now breaks my heart. I can only imagine how scared she was. She watched me, kept me talking to her and got me ready to leave.
Paul loaded me into the car, stopped and picked up my dad and we were off. I don't remember that. I do remember showing my dad how to work my blood pressure cuff, how to check my vitals and showing him what meds I was taking, all just in case. We made a very long trip to another state to see my surgeon because no one local would understand what was wrong with me. My disorders are too complicated. Apparently we drove for almost 10 hours. I was unconscious most of it. I woke up to cry, hold my head and try to throw up. That was it. I don't remember those 10 hours. It was Monday night when they checked me into the ER. Paul says that they gave me a lot of meds and I finally seemed a little more stable and had less pain.
I saw my surgeon the next morning. At first, he wanted to do an emergency decompression. Then he decided to do a VP shunt (a shunt that goes in your brain to drain fluid). Then he decided to put in a lumbar shunt (this shunt goes in your back and drains fluid). This is what I eventually got. I was in the hospital for one week, Monday-Monday. I remember seeing a few friends, I remember talking to dad and Paul a couple of times, I remember seeing my doctor once. That's it. On Thursday, May 1st, they took me to the OR and put a lumbar shunt in me. This is a small rubber tube that is in my spinal column. It runs around my body and drains excess fluid into my abdominal cavity where my body absorbs it and moves it out. I don't know what day we left and came home. I don't remember much for another couple of weeks. I was very sick during that time. I made a bed on my couch so that I could be with everyone and I didn't move for those two weeks or so. I was still beyond sick. I was still hallucinating, still sleeping all day. Paul has told me that he was very worried about me during that period.
Eventually my body healed some. Or adjusted. I don't know which it was. I'm better now than I was then. I'm not well but I'm not seeing some of the crazy things I was then! I'm not sure that the shunt has done much for me. I still have a lot of symptoms of high pressures. I'll live with it for now, though. I still don't remember much of that three week period but my dear husband fills it in for me. I know in my heart that I am lucky to be alive, that I beat the odds. With pressures that high then the complications that followed, I should be gone. Those aren't the kind of things that people survive. But, here I am to tell you about it now.
And that is the long winded story of the week (or three) that I can't remember. That definitely becomes a landmark on my life's timeline. Things will now be remembered as before I tried to die and after I tried to die.
