It’s Not a Tumor

12 09 2010

I married Car on March 11, 1997. I was 20 years old, though I often feel the need to append “almost 21” since my birthday was 3 months after that. If I was 21, you can’t mock me for getting married too young. Or something.

In December 1997 I got a headache. Now, don’t get me wrong, I’d had headaches before. Migraines, even. But this headache? It was ruler of all the headaches in the land.

I went to the doctor, who diagnosed a migraine, gave me a shot of Demerol, and told me to go home and sleep it off. When I woke up, the headache hadn’t budged. It’s a horrible feeling—to pass out in a drug-induced stupor, and then wake up feeling just as lousy as you did the day before.

I went back to the doctor, because this was obviously not a tolerable situation. I had a headache, and he needed to make it go away. That’s what doctors do, right? They fix things. (Shut up. I was young and naive.) My doctor, an osteopathic physician, thought perhaps I needed some sort of manipulation done on my neck. I’m not sure exactly what he did, but the next person who tries something like that on me will be kicked in the gonads, because holy crap did it ever hurt. Also? I still had a headache.

I got another shot of Demerol and went home.

I think I went two days at this point, because I can’t believe I would’ve gone back the next day. I’m just that stubborn. All I know is when I decided to get help a third time—12/13/97—it was Saturday, so we went to the ER.

The lovely thing about the ER? When you present with the worst headache of your life, they take that kind of seriously. So they did a CT scan, which was normal. Then they decided to do a lumbar puncture. FYI, those hurt. A lot. I still have to close my eyes when they do a lumbar puncture on House (you know, every episode). My spinal fluid was clear, but I had mildly increased intracranial pressure. The doctor didn’t think it was anything, but referred me to a neurologist just to be safe. Oh, and they gave me two shots of Demerol and sent me home.

I saw the neurologist 12/17/97—four days after my ER visit. Four incredibly painful days. For those of you keeping track, at this point it had been over a week since the initial onset of my headache—probably close to 10 days or so. The neurologist’s conclusion was that I most likely had pseudotumor cerebri, a condition where the body believes it has a brain tumor, even though it doesn’t. Apparently bodies are none too bright.

I’m trying to be objective. I was 21 years old, had a clear CT scan, and had symptoms that were indicative of pseudotumor. I’ll give the neurologist that much. I can see why he thought that was the case. Unfortunately, this doctor had one of the worst bedside manners I’ve encountered. His findings were presented thus:

“I think you have a condition called pseudotumor cerebri. It happens most frequently in young, overweight women and the only way to cure it is to lose weight.”

Ten day migraine, people. Ten. Days. At that point I couldn’t walk unassisted. So…I’m going to get up and jog a few laps around the building? I think not.

His recommendations (as transcribed from my medical records):

1. MRI of the brain with gadolinium.
2. Ophthalmology referral for confirmation of papilledema and visual field testing.
3. Fioricet for headache.
4. Weight loss.
5. Follow up in one week or sooner prn.

Did you catch that sneaky #4 he stuck in there? Yeah.

On December 19th, I went to the ophthalmologist, who found no funky swelling or any other problems with my eyes. Later that day, I had my MRI.

Have you had an MRI? I’ve had several. It’s a wee bit claustrophobia-inducing. By which I mean I never knew I was claustrophobic until I had my second MRI. This, however, was my first MRI, and by that point I was so completely out of it that I slept through the whole thing. No medications needed, just pain and exhaustion.

When the scan was over, the technician came over. “I’m not supposed to say anything, but there’s something on there. It’s not a tumor, but there’s definitely something on your scan.”

My MRI report:

Areas of bright signal on T1 imaging within several areas of the venous sinus system including portions of the sagittal sinus, right transverse sinus, right sigmoid sinus, right jugular vein, left cortical vein, and a portion of the left transverse sinus. All areas likely with venous thrombosis.

I was at my parents’ house later than night when the doctor called. “You have a blood clot in your brain. You need to stop taking your birth control immediately and pick up a prescription for Coumadin. You also need to go to the hospital to have blood work done.”

The funny thing? I have no memory of my reaction to this news. I recall perfectly what the doctor said, but not how it affected me.

There’s a lot of testing and more jerk doctors and all sorts of other crap that followed after this. Eventually I was diagnosed with an autoimmune disorder, Antiphospholipid Syndrome.

Perhaps you’ve heard of it.

No? You haven’t?

Go figure.

Oh, I do have to share this note from my next visit to the neurologist:

Headaches continue unchanged. Lortab and Fioricet provide only marginal relief. MRI of the brain revealed a venous sinus thrombosis. Ventricles were normal. There was no mass effect. There was obvious increased intracranial pressure. Ophthalmologic exam by her report did not reveal any papilledema, and visual fields were okay.

See, this is why I could never be a doctor, because here’s how I would’ve written it:

Headaches continue unchanged. Lortab and Fioricet provide only marginal relief, because holy crap this woman has a ginormous blood clot in her brain! Everything else was normal. Except, you know, that blood clot thing.

You have to admit, that would make reading medical records a lot more interesting.

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15 responses

21 02 2012
I’m Totally Okay! Well, Mostly. « Like Swimming

[…] this point we were all confused and rather concerned. Because of my clotting disorder—complete with history of blood clots—chest pain and shortness of breath (SOB! Hee!) that can’t be accounted for by another […]

1 11 2011
To Breathe or Not to Breathe « Like Swimming

[…] of my other health issues, this pesky Antiphospholipid Syndrome I have—you know, the one that caused a blood clot and all my pregnancy issues? I take a medication to keep it under control. It’s considered a […]

15 04 2011
A Memo to Myself « Like Swimming

[…] had a blood clot in your brain. It left behind scar tissue. That has to have some sort of residual effect, […]

7 01 2011
Little Earthquakes « Like Swimming

[…] my body? It’s kind of crazy. Remember that whole “it’s a migraine oh wait no it isn’t it’s a blood clot whoops good thing you… episode? Yeah. That’s not normal. Imagine life after that—what happens when you get a […]

13 09 2010
Mimi

Funny, I just got a letter today from a medical research place asking if I wanted to be part of a study for a new migraine medication… I think I might actually do it, because migraines are the DEVIL. P.S. You must come to the Jen(n) Appreciation Day party on Wednesday!!!!!!!!!!!!!!!!!!!!!

13 09 2010
Mimi

oh, and props for the ‘Junior’ quote! 😀 hee hee

13 09 2010
Sharyn

So, I was holding my head reading your post (I’ve had a headache almost every day since July 1st. Not continuous, thank goodness, but reoccurring almost daily. Diagnosis: migraine. Duh. Anyway, I was holding my head right up until then end, then had to cover my mouth so I wouldn’t laugh too loudly (I’m at work). I love reading your blog! Thank you and please keep writing!

13 09 2010
andygirl

so glad you came through okay! I get migraines and I try to not be *that* girl (the one that is my mother) that instantly assumes I have a tumor or hematoma (because I watch too much House), but then I hear a story like yours and am tempted to go to the ER.

ps? I also like ER docs. they do take you seriously. I actually prefer the ER to a normal docs office.

13 09 2010
frenzyfun

holy cow! What a bummer to have to live with! Stupid dr’s.

13 09 2010
Jenny

All things considered, you appear to be doing remarkably well?!?!?! How do you do it?

13 09 2010
Jenny

Apart from miserable pregnancies and some smaller complaints (migraines and arthritis, to name a couple), it’s a pretty mild condition. Given what I’ve seen on the autoimmune spectrum, if I had to pick my own disorder, Antiphospholipid Syndrome would make the short list.

13 09 2010
Missy @ Wonder, Friend

You know, I hate the show Private Practice, but… I love the concept of how they practice medicine. They all work together and treat the whole person. I would love to find a group of doctors like that!!

I’m sorry you had to go through this. Did they ever do anything about the clot or just let it dissolve (if that’s what, in fact, clots do – I don’t know!)?

13 09 2010
Jenny

That’s the amazing thing–they did nothing but start me on Coumadin, a blood thinner than can take up to a week to reach full effect. Knowing what I know now, I should’ve been started on heparin injections at the very least, or possibly hospitalized and given IV heparin. Basically, it’s a miracle this lousy neurologist didn’t kill me.

13 09 2010
Annette

Holy crap–on so many levels. Had to go to Wikipedia to understand what the heck that is. Scary (and freaking miserable!) stuff.

13 09 2010
Erin

Oh how I hate doctors like that! Like the one who told us to consider Colby’s quality of life and take him off life support. She almost got punched by me not my husband! I can’t even imagine someone letting you go ten days with a migraine like that and then telling you to lose weight. Crazy!

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