Friday, February 27, 2009

It's not a tumor

I have an avid interest in some people's blog who are sick. I mean really sick. I got hooked an a colleague's son website over a year ago and since then have faithfully followed close to 30 caringbridge websites - mostly of children with serious and/or terminal illnesses. So I want to preface this entry by saying I am in no way mocking the horrific experiences that so many families go through every day dealing with these types of issues.

I get headaches. For as long as I've been an adult - all kinds. Migraines, tension headaches in my neck, general headaches. Seems like I'm popping 800mg of advil at least 2-3 times per week. Never really thought much about it until about a month ago, I was getting this sharp pain on the top of my head when I would go from sitting to standing, or when I stretched or yawned. I'm talking the kind of piercing pain that would make me have to sit down and close my eyes. The pain would last only about 10 seconds and be gone. But it was happening 3-4 times a day for a few days, so I thought I would go to the dr. and see what might be going on. I LOVE my doctor. She is so great and totally not hesitant to order tests of all kinds. I love that about her. So she ordered some routine blood work and a CT scan. She mentioned that they don't take strange headaches very lightly in her practice - since her partner's daughter was diagnosed with a malignant brain tumor about a year ago (one of the many Caringbridge kids I follow religiously)

So I got the CT scan done last Wednesday - 2 days before my 36th birthday and almost a week after I had seen the doctor. By that time the headaches were gone and I had fallen victim to the stomach bug that was going around and hadn't really eaten in about 4 days. Thursday night, on my way out to a little Girls' Night revelry, I noticed a voice mail on my cellphone. It was my doctor calling to discuss the results of my CT. Never a good sign when the doc calls you back after hours on your cell. Panic set in. I couldn't call back after hours and the office didn't start taking call until the next morning. I had one drink at the bar with my girlies, and went home - I was too distracted to really enjoy myself.

I got to work on Friday (my birthday) and called the dr.'s office right when they opened. I announced myself to the receptionist and before I could explain my call I got "Oh Mrs Scherer, hold on, please." Another unsettling sign that something must not be right. I was asked for a callback number for the doctor to call me back. 5 minutes later the doctor calls back. "How are your headaches?' she asks. I promptly tell her that she's freaking me out and plead with her to tell me what's going on. I reported that my headaches had gone away since I'd seen her last and was just struggling through the tummy bug. She didn't like the sound of the nausea. She let me know the good news - no tumor or growth. Slight sigh of relief, but what in the heck else could be wrong that has her tracking me down? CT showed evidence of increased pressure in my brain. OK. What's that? The official terms are idiopathic intracranial hypertension or pseudo tumor cerbri. I like the first one better. And it occurs primarily in women who are Obese. nice. (for the record, I know I moan and groan about needing to lose weight, but I most certainly wouldn't put me in the Obese category). If the pressure gets too high for too long it can result in permanent blindness and some folks have to have shunts put in to drain the cerebral fluid from their brains to keep the pressures down.

She tells me she is going to try to get me in with a neurologist or ophthalmologist today and if she couldn't she would just direct admit me to the hospital so some tests could be done. Holy shit, I'm really panicked now. She asks me if I'm at work (which I was) but I told her I would head home and wait for her to call me back. I hang up the phone and start sobbing. Tell my co-worker I have to go and start packing up. My hubby calls to see how my Birthday is going so far and I start mumbling thru tears what the dr had just told me. As I'm driving home a strange doctor's office calls and tells me I have an appointment at 10am to see the doctor. At this point, I'm not even hearing what kind of doctor it is. A neurologist would be doing a spinal tap to measure the severity of the intracranial pressure - the eye doctor would be checking my optic nerves for signs of increased pressure. Thankfully it was the eye doctor. I'll take an eye exam over a spinal tap any day.

So the eye exam was normal, no pressure in my optic nerve, but I'm still really confused about what's going on and what's going to happen next. The eye doc tells me he'll call my doctor and I should wait for a call back from her on next steps. In the meantime my husband has left work and is waiting for me in the eye dr's lobby. We both drive home. I give the doctor an hour to call me back. When she doesn't, I call her back and she explains that since my optic nerve is not showing signs of stress, the situation is no longer emergent, and I can go ahead and schedule an MRI/MRA to get a better look at my leisure. My leisure, my ass. I had already not eaten a thing, and I know the test would require me to fast for several hours before, and I'm certainly not going to spend my birthday sitting around if I have an aneurysm or some other freaky thing going on in my head. So I call the MRI place and masterfully get a 4pm appt for the test. MRI test goes off without a hitch. But here's the kicker - I don't get the official results from my doctor for another 5 days! I had to bribe some of my medical friends to pull some strings and try to get a peek at the results ahead of time. I did hear back from 1 friend on Tuesday or Wed (can't remember now) and he told me the initial read of the MRI was "unremarkable". "How dare you call me unremarkable," I joked! The MRA results weren't in yet, but I was a bit relieved, but wouldn't really rest until I got the final report from my doctor.

So Thursday afternoon they called me, after I had called them about 20 times from Mon-Thu for an answer. The nurse made the callback - always a good sign. Apparently I have some kind of congenital vascular anomaly in my brain that they are guessing is causing the increased pressure and if I get more headaches, they can give me medicine for it. So I need to be on alert for any vision changes, sharp pain in my head, dizziness, etc. I may have to stop drinking - I get those symptoms every Saturday night after an Apple Martini or 2, or 3 . . .I'm guessing every little "normal" twinge will give me pause from now on. I still have lots of questions, and plan to pick up all my films and reports and google all the words in the findings to try and piece things together. I wonder what kind of medicine they give you to reduce the pressure in your brain? Maybe one of the side affects is weight loss? I should be so lucky. Awful - aren't I? Hey I'm all about the silver lining.

So the 36th b-day was certainly unforgettable but not much fun. Hopefully 37 will be less eventful.

PS - To all my Caringbridge friends and others I know who are suffering - My thoughts and prayers are with you always.

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