Monday, October 19, 2009

The Other Side, part 1

This is the first of several posts surrounding our newest adventure. They call it "spontaneous intracranial hypotension." Yep, that is exactly what I said.

How many MRIs, CT scans, invasive procedures, and other things have I ordered in my short career as a doctor? To many to count! Did I ever really understand how terrifying some of these seemingly simple studies are to the patient? Absolutely not. Do I get it now? More, but I also fully realize that I will never be able to understand how scary it would all be from the point of view of someone who knows nothing about medicine. Tack that on top of being at a University Hospital with students, residents, fellows, attendings, and a way of doing things that can only be described as confusing (and I've been in this system for 8 1/2 years). I know I will never REALLY know what it is like to be a patient who naive to all things medical but after the last few weeks I at least have an idea.

The headaches started slowly. They were different than any headache I had ever experienced (I don't usually have a lot of headaches and have no history of migraines, etc) which seemed a little strange. It started on a Monday. They were not that bad, just a little distracting. In describing them to my coworker I said, "it feels like the pressure is off in my head." The headaches were made worse when flexed my neck and they got worse as the day progressed. Interestingly, they went away after laying flat for about 30 minutes. I took I.buprofen, sinus medicine (even though I had no sinus symptoms), and tried to drink a lot of water. I had started a new diet so I thought that might be the culprit. As the week progressed, the headaches became worse. By Sunday, I was in pain. If I stood up, I hurt. If I was laying down, much better. Each day was like a ticking time bomb, I knew I only had so much time before I was going to have a lot of pain. I was barely making it through the day and was going to bed as soon as I hit the door. It was almost like my body was FORCING me to put my head down, it was the ONLY way to make the pain bearable. I had been talking to my PCP through all of this and had one trip to the ER in the middle of it all. Everyone was thinking spinal headaches without the usual preceding trauma (which is rare, but happens). By the following Wed my PCP had an appointment for me with a Neurologist. By the time I made it to his office, the pain was overwhelming. It was searing and felt like lightening through my neck and the back of my head. I was ready to jump off a building, I was hurting. I had been up all morning and was just barely making it by the time I got to the appointment. Thankfully, the woman at the front desk took mercy on me and let me go directly to the exam room and recline. The rest was kind of a blur. The neurologist came in and started examining me. He was rough and had a terrible bedside manner, none of which suprised me since I have known him since medical school (and NEVER liked him). But, he is good (smart) and the head of the department AND he was in my room immediately. Unfortunately, I couldn't quit crying. I was scared and in pain and my medical care was now in the hands of a man I never liked. It was one of those situations where you just can't stop crying, even though you really want to! I wanted to say, "I'm not one of those hysterical crazy women, something is really wrong here!"

After about a hour of questions and physical exam he says, "something is really wrong here. Either you have a tumor or a spinal leak. Are you here alone?" I was there alone because I had gone to work that day and had told Mere to stay home until I found out more, a decision I was regretting. I said, "Yes, but I can have someone here right away." "Your husband?" he asked. "Sure," was all I could manage. Then he said, "we are doing an urgent MRI of your brain. If there is no mass and signs of a leak then we will do a myelogram and then a blood patch or maybe surgery." Me, "how long am I going to be down?" Him, "no matter what this turns out to be, you are down for awhile." At this point in time, I was just to scared to ask anymore questions. Not to mention, I was still in a considerable amount of pain. Of course, my pager had been going off throughout my appointment (because that is just my luck). I called the chief fellow and tried to tell her what was going on and pass off my consults to her (bless her heart, I was crying so hard she could barely understand me).

Off to MRI we went. Now, I know how hard it is to get an urgent MRI. I know the buzz words that you have to use to make things happen so fast. I also know that none of them are good. After they got me settled in the hall on a gurney, it was time to wait. Mere was waiting for my mom to drive from Conway to watch Layne and then she would be there. After about 30 minutes, they moved me to another gurney and then the MRI. Now, I knew that some people got claustrophobic with MRIs and I knew that they were loud. However, I wasn't expecting to have my head put in a brace, earbuds shoved into my ears, and be in a tube with less than an inch around me in any given direction. The tech said as I went in, "it's gonna be loud, whatever you do, don't move. About 1/2 through the scan we are going to pull you out, start and IV, and give you some contrast dye then we will put you back in the scanner." Uhmm...ok. As I started to go into the scanner I could feel my heart speeding up and anxiety coming over me. For a brief moment I didn't think I could do it. Luckily, something (the cozmos, God, whatever) just came over me and I thought, I can relax and do this the easy way or I can totally freak out and delay this process. I shut my eyes and retreated into my own little world. While I was in the machine I couldn't help but wonder if we were going to be dealing with a tumor. It was scary. But, for the time being it was just me and the machine. No one could get to me, talk to me, or call me...I relaxed. I started to think of how patients must feel when they are getting scanned. Big, loud, cold machines and the ability to see all the bad stuff (like cancer) that can be hiding in our bodies. I was thinking of the woman with breast cancer and new onset back pain who gets put through the scanner looking for spinal mets. The young guy with melanoma and new headaches looking for brain mets. How terrified those people must be!

They pulled me out and tried to send me home. Nope, I knew I was supposed to wait to Dr. VH (the neuroradiologist). This was the first of many times that no one really knew where I was supposed to be, luckily, I did, but I fully realize that the average patient would have no clue. Phone calls were made and a few minutes later, he came around the corner. Dr. VH (we had never met before) came up to the gurney and said, "you definately have all the signs of a csf leak and low pressure. Now, we just have to find the leak." Thank God! No tumor. We talked for a few minutes and decided that since it was 4:30 in the afternoon that we would wait until the morning to start the process of finding the leak. I was given the option to be admitted but mostly just wanted to get to my bed, so they discharged me home with instructions to return the next day at 8am.


amy said...

oh shit, what a nightmare jess! i'm guessing you're all or much better now thank goodness but i'm dying to hear more!! hurry with part 2, k? i hope you're feeling much better! how scary!

Jen said...

I was thinking about asking you the other day whether you thought going through this would help you understand what it's like to be a patient. As completely horrible as it has been, I guess the good thing about it is that it will make you a better doctor.

Meredith said...

Oh my gosh- talk about a reflective and terrifying situation to be in. Given that you are writing this and there is a part two, I'm hoping all is well!

Sonya said...

Thanks so much for writing the details and sharing your story. I've been following the little updates that Mere has been giving.

As a parent who just went through a trauma incident with my then 6yo child, it is so wonderful to read your reflections from the patient perspective.

There are still times where I want to scream "THIS IS MYYYYYY CHILDDDDDDD" and while this may be routine for you (the doctor), this IS the most difficult thing we've ever faced. Thank goodness for the ability to get 2nd opinions!