After the disastrous first attempt at the myelogram, I had steeled myself for drama at Friday’s lumbar puncture and imaging festival. I just refused to believe it would actually happen. I mean really. It’s me we’re talking about here.

Much to my dismay, it went perfectly. The lumbar puncture was pretty uncomfortable, but I didn’t have a reaction to the contrast, I didn’t have a seizure and we made it out relatively unscathed. All things worth celebrating for sure.

But wait, there’s more.

When they did the lumbar puncture, they measured my opening pressure. The only other time they measured it, it was borderline low at 8. But that time my “fabulous” neurologist didn’t actually write anything down, so we had no record of it. It was basically my word and the new neurosurgeon who’s unassociated with the old neurologist really had no idea what to think.

Friday it was 4.

FOUR.

8 is barely low, 8 is the lower cut off for normal range opening pressure (on the scale these doctors use). On Friday they did the puncture under fluoroscopy so there was no doubt about it being user error or crappy techniques. And I measured an opening pressure of 4.

I am not crazy.

Did you hear that? I AM NOT CRAZY.

Friends, that is called vindication.

However, vindication evidently comes at a steep cost. Because by around 8pm on Saturday, I noticed that my head didn’t feel normal. I was getting up a little more since my 24 hours of flat lying had passed, but it seemed like the pain was growing. I tried to shrug it off. Last time I got a spinal headache it was well beyond 48 hours after the puncture and I was barely at 30 hours post puncture then.

Yea, well, my body doesn’t really give a shit how many hours it’s been. I have a spinal headache.

And I know I bitched about how bad it was last time and I know I complain about how much my head usually hurts, but holy shit, this is by far the worst headache pain I’ve ever had. In fact, it exceeds the worst pain I ever thought imaginable. When I stand up, it feels like my whole head is in a vice. A vice dipped in scalding hot battery acid. Scalding hot battery acid that weighs 800 pounds and pushes my head down to the floor.

It’s bad. It’s really really truly really bad.

I didn’t sleep much last night because of it. I couldn’t lie on a pillow, but in my sleep I kept grabbing it. It took much longer for the pain to go away when I went back to flat, which made it hard to find any rest at all. I couldn’t even have my computer screen on because the light was too bright.

When I got up this morning to pee, I thought I might hurl, the pain was so awful. And so, when the clock struck 9, I called my neurosurgeon’s office. They patched me through to the neurosurgeon on-call and I told him what was going on. And his response, in the most dismissive tone I’ve ever heard was, “well, then you should probably go to an ER.”

No compassion. No concern. No help. Just go to the nearest ER and see if they had an interventional radiologist around on a Sunday morning who could squeeze me in for an epidural blood patch. No worries about how I can’t even sit in a freaking waiting room because the pain makes sitting up a freaking nightmare. No worries about making sure I’m okay. Just go to an ER and leave him alone, essentially.

I talked it over with my sister, my husband and my mom and we came to the conclusion that it would be best to give it one more day. There were a lot of factors, but mostly we figured the ER would be busy and there was a good chance that there wouldn’t be a qualified radiologist around to do it.

So my mom is on her way to Los Angeles now. Tomorrow I will call my neurosurgeon’s nurse and see if it would be possible to schedule a blood patch at their hospital so the waiting could be minimized. If not, we’ll go to the hospital a few miles away and wait it out and hopefully get this fixed. I am beyond frustrated to be missing so damn much school already. It’s not fair and it sucks. But more than that, I can’t tolerate this pain.

I’m pretty strong, I have a pretty high tolerance, but this is just horrific. This is pain that I hardly believed existed.

This is hell.

But despite the pain, despite the guilt over missing school and wasting more of my family’s time, I have evidence that something is wrong. I have proof that it’s not all in my imagination. I have a documented objective sign that we can’t give up yet.

I may be in hell, but I have hope again. And that will see me through.

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