After a brief exam, my doctor began feverishly flipping through my records. He had two folders. The pages were written on their front and back and, from what I could tell, he appeared to be looking at everything. I'm so lucky I have such a thorough doctor, I told myself in a secret promise to keep things positive. However, somewhere in the deep recesses of my mind were questions, Isn't this just routine? Didn't he just say things looked stable? Is stable no longer good enough?!
Finally, he spun around on his stool and told me all he was thinking. I sat stunned. I can't even imagine what my faced must have looked like: amused? offended? confused? terrified?
Exactly three years and one week from the day I was diagnosed, three years and one week from the spinal tap that answered all the questions, this doctor was calling that diagnosis and spinal tap into question. "I want to play devil's advocate here. What if you never had Intracranial Hypertension?" He wondered about how the spinal tap was taken, since he wasn't there. He wondered about my initial symptoms, since he took me on three months after in an emergency eye surgery to save me from blindness. He wondered if everything he saw came from something else and perhaps the diagnosis was incorrect.
My doctor, like most of the specialists I have dealt with on this journey, is also a researcher, an intellectual and curious. I respect this and understand this, even on the days it flips my life upside down. He proposed an "experiment" to possibly answer the questions and, in turn, possibly speed along the process of me getting off the medication I've been on for three years. He told my husband and I to think about it. He told us to decide if it is something we think is worth trying (and risking) and he told me what to do if I decide to go for it.
Drop off my medication and get a second spinal tap now to see where my pressure is.
If my intracranial pressure is still high, then I am putting my already damaged vision in danger again. BLINDNESS is a possibility.
If my intracranial pressure is normal, then I can stop taking Diamox, which (a) sucks the life out of me, (b) my body is starting to show signs that it might have a sensitivity to, and, most importantly, (c) is stopping my husband and I from starting our family.
Questions that will be answered as a result of this "experiment":
Maybe only one. If the pressure is high, then we will know that I currently have active intracranial hypertension (IH) and the initial diagnosis was correct. If it is normal, a new question will be raised - Was my initial diagnosis wrong, or was it correct and the IH just went into remission?
So why am I sharing all of this nonsense with you on my blog tonight? Well, two reasons: First of all, I'm doing it and it is equally terrifying and infuriating. The terror comes from the risk, of course. I already suffered through two years of being unable to read because of something wrecking havoc on my eyes and I don't ever want to go back there again. The infuriating part comes from being swept back up into the tidal wave of the "unknown" - although I was diagnoses with a rare disease, having a name for what caused all my problems has been comforting; calling that name in to question is nothing less than disconcerting (never mind, as my husband reminded me, I almost had a brain shunt put in due to this disease!).
The second reason I am blogging all about this is that I know this is not going to be easy. Whether my sight falters or not, I am most likely walking into a world of pain when I take down these meds. My doctor has instructed me to keep going even if the headaches come. The only thing that should bring the experiment to a screeching halt is vision complications. Those are my instructions. Tomorrow I will call the hospital to make my appointment for my LP (lumbar puncture/spinal tap) and build my schedule for coming off the meds from there.
If I can be so bold to make a request of you, it would be this: please send me good vibes in any way that you see fit - prayers, reiki, happy thoughts, virtual hugs, etc. I will take it all. I know I have only come this far in my healing journey on the wings of such mystical creatures and I feel this could be their greatest load to carry yet!