Thursday, March 07, 2013

Pseudotumor Cerebri

So, it occurs to me that I have mentioned my latest diagnosis, but I haven't really told anyone much about it. I haven't explained what it is, how it was diagnosed or what it means long term. Maybe I should do that now. Maybe I should start from the very beginning... .

Okay, so since last spring, my migraines had been increasing in severity and frequency. I was also beginning to experience some memory issues, but nothing huge. At that time, we were dealing with finding out that the last treatment for the thyroid cancer hadn't worked, and that there was still a tumor in my thyroid bed, trying to get the appointments at MDA set up, and getting our ducks in a row in the event that I would need more surgery. It was natural to just chalk it all up to stress, you know?

But by the end of the summer, when things had slowed down, we noticed that the memory issues had not resolved with the decrease in stress but were, in fact, getting worse. I started telling my doctors - rheumatologist, GP - I even made an appointment and started seeing a psychiatrist because I thought it might all be due to being depressed. And there was some depression and anxiety, but not really....

So anyway, I have thislist of symptoms that I'm taking to all my doctors. I kept the list with my medical info, and handed it to whichever resident I saw at each appointment, and then to the attendings when they would come in. Same list each time. Literally.

  • Tremors
  • Memory Loss
  • Cognitive decline (trouble spelling, doing simple math, forgetting or "losing" words)
  • Eyelid twitching
  • floaters in field of vision
  • increasing migraines that don't respond to meds
  • branch patterned goosebumps on right arm
  • exhaustion
  • muscle cramps, especially in hands
  • peripheral vision decline
  • mood changes/depression/anxiety
  • nipple discharge (sorry, guys!)
  • no libido
Each time, I handed them this piece of paper with this list on it. Each time, they would pay attention to one, maybe two, items on the list, and dismiss the rest, then either tell me I'm stressed, depressed or just tired. It was so far beyond frustrating. Finally, I got my rheumatologist to refer me to neuro. Her only reasoning? Increasing migraines. Fine. Whatever. I got my referral nonetheless.

In the meantime, though, I got this headache.

At the beginning of September, I noticed that, instead of having migraines almost every day, I was having a near constant migraine. By our anniversary (9/16), it was constant. And debilitating. As in, I was doing nothing but laying in bed, crying, because it was honestly the worst pain I had ever been in. It got so bad that I was debating whether to call my GP or go to the hospital. The only reason I chose the GP was because the thought of waiting in an ER in the kind of pain I was in was just unfathomable. Bright lights? Lots of noise? No, no thank you. 

So anyway, I go to the GP. Get a doc that says, "meh, migraine, here, let's give you these migraine meds to try." I go, get the rx filled, take it in the store (because I was honestly in that much pain - I wasn't driving, Hans was, which is rare, too). Nothing. No relief. Call back the next morning, get told by the MA that was taking the call that no one was going to write me an RX for narcotics (bear in mind, I never asked for narcotics. I'd already tried the fioricet I had been given, and some other painkillers that I have been prescribed, and when none of them worked, I didn't bothering taking additional doses of them because it was pointless), and I should go to the ER. As nicely as I could, I asked to please speak to either the attending or one of the residents, as I had been told when I was in the day before, to call if the headache had not improved, and it hadn't. This time, I got a very caring resident who, once I made it clear that I wasn't, in fact, drug seeking, asked me to come back the next day to see her. With her, we tried a couple more migraine meds, hoping that maybe we just hadn't found the right combo. She also ordered a head CT, that I went and had done that very day (because no one wants to put off a head CT when there's clearly an issue). Of course, it came back clear. Still, the headache persisted. Not headaches. Headache.Singular. This was the middle of October, and I had had this headache nonstop since the middle of September. I went to bed at night with a throbbing head. I woke up in the morning with throbbing head. The only thing that seemed to be bringing a modicum of relief was a combo of toradol or diclofenac and compazine, along with just hiding in bed as much as possible. It was no way to live.

Finally, it was time to see the neurologist. Again, I handed over my list. Again, I explained my concerns. Again, I detailed all the steps we had taken to that point to remedy the situation. Again, it fell on deaf ears. It was suggested that I go see a colleague of hers - a headache specialist - for botox injections. Because that's a normal treatment for chronic migraine, and, after all, at 34, I could use some wrinkle work (her words. I just simple dogged at that one). I asked if there was anything else she could recommend in the meantime, as I wasn't terribly excited by the thought of taking these heavy duty meds just to control symptoms for a few hours - and let's be clear here: the headache was not going away, it was simply being lessened to a point that I could almost function. To appease me, she ordered an MRI. Again, I went down and got it scheduled for ASAP (I think I had to wait a day - the imaging center at Ochsner Kenner really is fantastic!). A few days after ( a Friday at 5:30, to be specific), I got a call from the GP, who had been the one that my MRI results were sent to, for some unknown bit of kismet.
 "Has anyone called you with your MRI results yet?" she asked.
"No. Not yet."
"Oh, well I have them here. Do you have some paper and something to write with?"
I grabbed paper and pen, and began writing what she was telling me.

"Pseudotumor cerebri. Your MRI report suggests pseudotumor cerebri. Have you ever heard of this condition before?" At first I thought I hadn't. So, she began telling me about it, calming me, because hearing the word "tumor," even when, intellectually, you know that pseudo means not, it's hard to squelch that fear that creeps into your belly. I wrote down as much as I could, then promised to call her office on Monday to make an appointment to talk to her about this face to face and figure out next steps.

to be continued....

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