Friday, June 12, 2009


So, unfortunately, yesterday was another bad day. Most of the day, I was just so low on energy that I was a bit like an angry zombie. It was another bad mood day, and again, I was really irritable toward my poor mom and boyfriend. I wish I could be in a good mood all the time, or at least more of the time. But I just don’t seem to be handling my symptoms very well lately. It’s so overwhelming. And it can make me mean. I know it is wearing on them, as even the most patient people have their limits. And they are just as frustrated with my worsening symptoms as I am.

I’m incredibly frustrated by the postponement of my surgery for another 6+ months. I’m even more concerned about my friend Hannah. She had her fusion revision scheduled for next week. Drs. Milhorat and Bolognese agreed that she needed the surgery. But apparently, the newly-appointed director of The Chiari Institute informed her that her surgery was cancelled, because it wouldn’t help her, so it was unnecessary. WHAT? I have no idea who this guy is, where he came from, or if he knows what he’s talking about. But how does he have the power to overrule a decision made by the most experienced doctors there? I don’t have any more information about this situation, but I will post if I learn more.

This certainly makes me wonder if having my fusion revision at The Chiari Institute will even remain a possibility for me. If her surgery is now considered "unnecessary", how do we know that my surgery won't also be deemed "unnecessary"? I hope that Dr. Bolognese will somehow be able to rectify the situation. Really, he needs to be promoted to the director position. He has earned that position with his experience. He needs a new partner with Chiari experience to help him out with the overwhelming number of surgeries that need to be done, but he should be in charge. I don’t see how any doctor coming in from the outside would be able to fill Dr. M’s position. Dr. B is the only one with enough experience to be making the major decisions.

In any case, I am relieved that I am in the process of contacting Dr. Menezes. I have everything together except for the surgical reports that I haven’t yet received from the hospital in New York. On Monday, I’m going to have to call the hospital and see if it is in process. Hopefully, that will be able to be sent out soon. I’d really like to know if I will have Dr. Menezes as an option for this surgery. It would be reassuring at this point, even though he’s never seen the inside of my head, which makes me uncomfortable.

Last night was another night when my body made it very clear how much I need this surgery. On the way home from work, I developed terrible stomach cramps. The pain was so intense that I couldn’t breathe normally. I went ahead and ate a bit of my Subway sandwich, after taking a peppermint oil capsule and a digestive enzyme. That pain actually eased up, for once. Unfortunately, it was immediately replaced with an “exploding head”. I had the headache all day, but it really worsened in the evening. The pain was unbearable for several hours, during which I turned into an irritable, cranky, PMS-ing witch.

Manual traction helped (lifting my head with my hands), so I tried real traction. First, I tried the Pronex. Unfortunately, it not only squeezes my ears uncomfortably; it also seems to press right against the rods in my skull. It just hurt too much for me to feel any relief. Then, I tried the inflatable traction. Neither of these fit me quite right, because my neck is smaller than the recommended sizes for each device. When I was sitting up, the inflatable traction caused too much jaw pain. (Does this sound a little like Goldilocks to you?) Then, I tried it laying flat. Unfortunately, in that position, the back of the device presses into the hole in my skull, which blocks off the flow of cerebro-spinal fluid, causing a pressure build-up. This is due to the fact that my craniectomy area is rather large, and only covered with skin. A titanium mesh plate would normally be inserted to cover the area, but there wasn’t room for it. So it was determined that it would be safe to leave it uncovered. It’s mostly okay, but at times, there are problems with having an area of your brain exposed. For example, if you just tap the area with your finger, it sounds like you are tapping a microphone inside my skull. Weird...

Eventually, I went ahead and took a Vicodin and an Ambien last night. The Vicodin doesn't actually relieve the pain, but it does somehow make it more bearable. It's hard to explain, but it's the truth. And the Ambien failed. I was awake for at least two hours before I fell asleep. Wonderful.

Today, my headache is not as bad as last night, but not much better, either. I'd say last night I reached a 9, and this morning I'm around a 7. Thankfully, I don't have anything that needs to get done today. So, I'll just lie here, watching the time pass me by. I do wish I could make more out of this life. But at this point, all I can do is try to endure it, which has been my approach to much of my life. Learn to cope. I've been learning since I first developed symptoms in junior high. So many days have been lost to pain. So many opportunities have been missed to sickness. This hasn't just been one sick year of my life. After all this time, it IS my life. Every day that I lie in bed, I feel that I am wasting precious years of my life. I've learned that each day is something to survive. Every day presents a new battle to fight. But there is no point in grieving over the lost years. Only acceptance is meaningful. I look forward to a time when I'll be able to live more fully.

So, here’s to hoping for a better weekend, for my mom’s and boyfriend’s sake. I also hope that my Chiari friends have a better weekend; especially Hannah, whose surgery has been postponed indefinitely (I am so saddened for you, Hannah.), and Kristen, who’s symptoms of cranial settling are worsening, just like mine (I'm sorry you have to feel this way, too!).