Excuse me, you're blocking my view!

Picture this…you are sitting in a crowded theater and someone wearing a really tall hat, or someone who has really big hair, sits down right in front of you and blocks your view. Or, you are standing in a crowd of people, all squished together where movement is nearly impossible, just so you can get a glimpse of someone or something you’ve been longing to see. You can’t possibly move but somehow THE tallest person in the crowd manages to maneuver themselves to stand right…in front…of you. Irritating, isn’t it? So irritating when someone, or something, is blocking your view. I recently stayed in a hotel in Houston and I looked out my window from the 11^th floor thinking I was going to get a beautiful view of the downtown Houston skyline on a sunny, blue sky, summer afternoon. I pulled back the curtains to get a look and I got this…

This is what my life feels like at this time...like something is blocking my view. I can’t see anything else but the illness that has circumscribed my life. When you are ill and no one knows exactly what is wrong with you, the waiting is irritating and time passes slooowwwly. My life is in slow motion. Living life on my terms has been put on hold for months now. I’m living life according to the limitations of extreme fatigue, pressure headaches, dizziness, nausea, and blurry vision. I’ve had constant pressure in my head for so long now that I am beginning to wonder what normal feels like. I’ve forgotten. Seriously. I wonder if the pressure were to be relieved if I would notice anything changed, or perhaps I would feel like I have never felt before. I don’t know. I hope I will soon find out.

I’ve had a third consultation with a neurosurgeon, Dr. Dong Kim, Director of the Mischer Neuroscience Institute at Memorial Hermann Medical Center, UT Health Sciences Center in Houston. Dr. Kim is a firm believer that for some patients, pineal gland cysts can be symptomatic and removal of the cyst is the only way to resolve symptoms. It seems even with what he knows about pineal gland cysts, and how in alignment most of my symptoms are with that diagnosis, he isn’t absolutely certain the cyst is causing my symptoms. And I’m happy that he is honest about it. I certainly do not want to undergo brain surgery only to find out it didn’t resolve my symptoms. Admittedly, I presented on self-referral to Dr. Kim earlier in my path to a diagnosis than most patients he sees for symptomatic pineal cysts. Most patients have suffered for years, treatment after treatment, diagnosis after diagnosis, everything else failing only to find out the pineal gland cyst they had been told was incidental and asymptomatic was actually causing their symptoms all along (because excision of the cyst resolved their symptoms). I, however, being the researcher and educator I am, did not want to go down that long road of treatment after treatment, diagnosis after diagnosis, only to find out the answer was the cyst. So I jumped over years of failed treatments (after realizing doctors were trying to diagnose me with migraine headaches, which I know I do not have) and went straight to the source. The part about my presentation that is most curious to Dr. Kim is that we know that the cyst was present in 2009 on an old MRI, and it was only slightly smaller then than it is now. And although I know I had slow onset of blurry vision and memory/cognitive complaints over the past couple of years, and slow onset of pressure headaches and nausea over the past year, something happened in February that changed all of that…something that made my symptoms come on strong and not go away. And he can’t seem to explain what changed all of the sudden that brought this on. So with those two things combined, he wants to be sure. I respect that immensely. And he expressed admiration for my research and desire to treat the problem, not just the symptoms.

Dr. Kim proposed a plan in alignment with the second neurosurgery consult I received at University of Colorado. He agreed that I should first get a lumbar puncture to measure the pressure in my cerebrospinal fluid. If the pressure is high, and if removing a significant amount of fluid results in an improvement in my symptoms over a period of a couple of days, then he feels the diagnosis is more likely pseudotumor cerebri (false brain tumor) and the appropriate course of treatment would be placement of a brain shunt to control CSF fluid pressure (which I can have done at the University). If, however, the lumbar puncture is negative for pressure, and if my symptoms show no resolution over the next day or so, then he feels the likely diagnosis is a symptomatic pineal gland cyst and he would offer me the surgery to remove it.

The lumbar puncture is scheduled for this coming week. By the end of the week, I should have an answer that will tease apart these two diagnoses. One more week and hopefully my view will clear up nicely, both figuratively and literally!