Been a while…

But I’m back.  The last two weeks have been difficult for me, and I got news that made my brain shut down.  Well, not completely shut down, the brain gerbils kept spinning round and round on their exercise wheels, but only on one subject.

Two weeks ago, I had an MRI due to the migraines.  The next day on the phone, I learned from the nurse that I had a brain cyst, but “don’t worry about it”.  It must be nice if her mind works like that, but my mind doesn’t. 

I tried not to worry about it, really I did, but like I said, my mind doesn’t work like that.  Every time I sat down to write anything, I couldn’t.  I had started NaNoWriMo, and couldn’t do anything on my novel (next year, or maybe next month on my own).  I couldn’t write here.  I could barely keep up with email.

Today, I found out the cyst is a sublenticular cyst.  From what the doctor told me, it basically comes out to nothing.  Nothing else was found in my brain except that, no hydrocephalus, no fluid build up where it shouldn’t be, no anything else.  Except this one cyst.  So, we do periodic MRI’s to make sure it doesn’t do anything (like grow), and I’m fine.

I have to wonder why the nurse even told me what little she did on the phone.  It’s not like I asked what the results were (I was expecting to get the results at today’s appointment).  Because of what she told me, I had two weeks of fear, trying to look up “brain cysts” on google, and getting frustrated because there was so much information on the web, and so little knowledge I had to even research things properly. 

The thing is, today when I went, my husband made a remark to the doctor about my having tried to do research.  The neurologist said that he always has to laugh when people come having done research because they always scare themselves silly.  I didn’t say anything at the time but two things occured to me:

1)  If people do this a LOT because of what you are doing, isn’t it maybe time to STOP doing this?  If you normally see people who’ve come in, after being told only that they have a brain cyst “but don’t worry about it”, who’ve tried to research with insufficient data and are scared silly, WHY do you keep doing it?  It doesn’t make any sense!

2)  I know you don’t think of things like this, but I’ve had to research my problems so many times, it’s a natural thing to me.   I’ve had doctors misdiagnose me so much, or worse, do as this doctor’s office did and give me a tiny bit of information but not much (just to get me to do the follow up appointment after exploratory surgery that finally diagnosed my PCOS*). 

I’ve had to be my strongest advocate for getting treatment that will treat my illness, rather than being told I’m fat and to lose weight and all my problems will be gone.  It’s become a habit for me, nowadays, to go to the doctor and say, “I have these symptoms.  I’ve done some research/had this before and think it’s this problem.”   Yes, people will say that I’m being disrespectful to a doctor, but honestly, when I go to a hospital for a broken toe (second toe on my left foot) and the nurse in the ER looks at the fifth toe on my right foot and says “it don’t look broken to me”, well, they don’t deserve the respect they demand from the outset).

I will be going to get a second opinion, just to be safe.  After all, this is my brain we are talking about.  This thing may very well be perfectly safe, but I want to be on the safe side.

*At the time I was diagnosed with PCOS, the idea was that PCOS was a benign, painless illness (if one can call infertility, hirsuitism, obesity, insulin resistance, and other things “benign”).  I went to the emergency room with a fast onset high fever (went from 99 to 104 in 1/2 hour), nausea and extreme pain in my left abdominal area.  In the ER examining room, they figured the pain to be coming from my left ovary area, but couldn’t figure out what was wrong.  They finally admitted me, did exploratory surgery, found nothing but cysts covering both ovaries, and sewed me back up.  Three days later, they released me, still hurting (partly from the surgery by then) but still with a fever of 101.  The nurse told me that I was “lucky” that I got the ‘flu’ with this unexplained pain, if I’d not had that, I wouldn’t have been admitted.  (This “flu” was totally asymptomatic, as it only had the high fever.  Later, doing research on the web, I diagnosed myself as having typical symptoms of an internal cyst bursting.)  I was given an appointment with the doctor for a month later for a follow up and sent home.

About 2 weeks later, I went home to visit my grandparents.  “Home” was four states away.  While I was at my grandparents, the doctor’s office called my home in NC and scared my roommates that it was OMG URGENT! that they were given my grandparents phone number.  At that point, the doctor called my grandparents house to scare me into keeping my follow up appointment.  The doctor herself called me to tell me I had hyperplasia.  When I asked what that was, she told me that it was VERY important that I come to the follow up appointment to find out.  WTF?  (This was before the days of HIPPA.)

I was planning on leaving for home in NC the next day (the appointment was three days later) but had to find out what hyperplasia was.  I went to the library and spent 5 hours looking up ‘hyperplasia’ in all the medical journals, and online (there was no google in 1998), trying to figure out just what the heck it was.  The best I could understand was that it was a pre-pre-cancerous condition.  I wrote a ton of questions to ask the doctor.

I got home (in time) and went to the follow up visit.  Asked the doctor all the questions I had, and had her get snarky on me because I dared to come prepared.  Basically, the hyperplasia was due to my ammenoreah (due to the PCOS).  It was easily taken care of with a birth control prescription.   That’s when the doctor told me I had PCOS.  Her exact words were (and yes, I still remember them):  You have polycystic ovarian syndrome.  It’s also called Stein-Leventhol Disease.  Here, let me write that down for you so you can “research” it, since you like doing it so much!  After that bitchy comment, she wouldn’t answer any of my questions about what it was, except to tell me to research it, because I liked research so much.

And that, ladies, gentlemen, and trolls who think I treat doctors disrespectfully so of course they would treat me disrespectfully, was the last time I ever accorded a doctor any kind of increased respect just because s/he was a doctor.  Treat me with respect, and get respect back.  Treat me like crap, and get treated the same, plus have a formal complaint put in against you with the AMA, as well as have me not pay you for your crappy, misdiagnosing service.

8 Responses

  1. I’m glad your brain cyst looks not to be a problem, and aghast at your doctors’ treatment of you in the past. I’m glad you lodged that complaint, because I have having trouble wrapping my brain around the idea that an informed patient is a bad thing.

  2. Ooooh, you’re way more together about what to do when doctors don’t treat you right than I am! I wish I had thought about complaining to the AMA when that emergency room doctor told me that I wasn’t ‘really’ allergic to penicillin…

    I’m glad the cyst looks like it’s non-problematic, too.

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  4. I’m glad the brain cyst appears to be benign, but I hope your migraines have gotten better. The generic brand of a medication I take causes me to have migraines sometimes and I know how debilitating they can be. I also correctly self-diagnosed myself with both an eating disorder and ADD even when doctors pooh-poohed my assertions as off-base. Eventually I found different doctors who were willing to listen to me and respect my intelligence and as it turns out, I was right all along. I hope you find that second opinion to be a little more of a respectful one.

  5. I believe I have undiagnosed PCOS, which I have asked a couple of health care providers about, but since I am on birth control and not planning to have children, they don’t seem that interested in actually diagnosing it. I do get mysterious fevers with no other symptoms a couple of times a year, though–puts me out of work for a couple of days while I sleep it off, and then I’m back to normal. But I get such an attitude about “self-diagnosis” when I ask about these things…

  6. Ugh, I know what you mean with the little information given.

    I recently had a battery of blood tests to see if I have PCOS, or, barring that, why the hell my period is so damned irregular.

    Earlier this week I received a call from a nurse telling me that one of the tests was abnormal – my insulin was high – and that the CNP wanted to do a few more tests, so they’d be sending me a new lab sheet and did I know how to make an appointment for labwork?

    That was it. So, obviously, my brain goes into little panicked circles. What does high insulin mean? Am I diabetic (if I am, I’ve had absolutely *NO* symptoms of it)? Do I have PCOS? What’s going on?

    I would’ve been happier had the nurse on the phone just said that I needed to do a few more blood tests. ~.~

  7. I’ve been frightened by the sequence of events you describe several times. But what can the health professionals do?

    If they don’t tell us anything about the results of the test until we finally get to see the doctor, then some of us are likely to agonize over the uncertainty.

    And if they tell us just a bit about the results, then some of us, at least, will agonize over how soon we’re going to die from what the nurse told us they found.

    I confess to being just such an inevitable agonizer.

  8. I love your voice, and indeed you have a right too. There’s should be a proper explantion from the experts then. That’s why we go to them and ask assistance since we believe in them. Then as per your and others experience i think it’s right to let them know your side. All the best for them

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