This is (my) Spinal Tap

Source: IMBD.com

“Have you seen the move ‘Spinal Tap?’” This is a question I posed to three doctors recently. Two laughed hard while nodding their heads. The other doctor, the first doctor to tell me I actually needed a spinal tap, said he had not. “Well you should really see it!” I said incredulously. I am thinking they should probably include it in the medical school curriculum.

But let me back up a little and tell you how I wound up having this conversation with a neuro-opthamologist who was about a decade younger than me, which maybe explains why he had never seen the classic 1984 movie, “This is Spinal Tap.”  (Although this is a very weak excuse).

While I was in Ghana, I noticed my vision was worsening and was more sensitive to light, but I chalked it up to the stress of living in a foreign country. When I got back from Ghana in May, I noticed I had a lot of “floaters” in my field of vision. Little black floating dots had come and gone over the years, but lately they had become more like webs and were more constant. So I went to an optometrist, who dilated my pupils, took a good long look at my eyes, and calmly said: “Your optic nerves are really swollen. You need to see your primary doctor right away.”

Now normally, this would not be an issue, but since coming back from Ghana I was unemployed and had no health insurance. I had been approved for Medicaid,  but because I was collecting unemployment (“On the dole,” as my father called it) the plan only covered Family Planning. Being 46 and single, I found this pretty funny. So to make a long story short, I got student insurance and was tested and examined for about four hours total. There were mutterings of a possible mass growing in my head causing the increased pressure in my optic nerves or an infection, but in the end two resident doctors and a real doctor stared at me simultaneously while the real doctor says: “In many instances if a person loses about 5% of their body weight, this optic swelling goes down on it’s own.” They said to lose weight, come back in a month for a recheck, and if nothing had changed they would need to do an MRI and spinal tap. “That should scare you into losing weight!”  

Well I hate to admit it, but because of that less than elegant bedside manner and the fact that about a week later my floaters starting going away, I did not make a follow-up appointment. All was fine until about a week ago, when I was at a different optometrist for a routine eye exam, and the doc says “Do you have to go back to work today?” I said no, but I had another appointment. He said to cancel it, because my optic nerves were swollen and he had to treat it as an emergency even though it likely was not one.

So that’s how I wound up at yet another medical center several hours later, with this very smart-looking neuro-opthamologist who, bless his soul, had studied so hard during his life that he never had time to see one of the greatest movies ever.

“My patients who have had one (spinal tap) said it really wasn’t a big deal.” I was instantly suspicious, thinking he was just saying this to prevent me from freaking out. He had no idea who he was dealing with. Have you had a spinal tap, I asked? No, he had not. So we talked for a while and he said he’d like me to have the MRI and spinal tap within the next couple of weeks. I wasn’t showing any other symptoms of a brain tumor or infection such as headaches, fever, or nausea, so he didn’t consider it an emergency, but a concern. A few days later, I got a call saying both procedures had been scheduled for the following Monday. That was five days away.

So then I did what any reasonable person with Internet and a computer would do while killing time before getting a spinal tap:  I started Googling “spinal tap.” My blood pressure and hysteria steadily rose as I read one website that was only full of horror stories. People who had to be on morphine for weeks after a spinal tap because the doctor damaged their spine with the needle. People whose legs never felt the same after a spinal tap. Why didn’t my doctor tell me about these risks? How irresponsible of him! I instantly decided I would not have one, no way.

So on Monday morning, the day of my MRI and spinal tap appointments, I made two phone calls at 8:01 AM: the first call was to neuro-opthamologist to make sure he really thought I needed a spinal tap (I left a message to that effect), and the second to the hospital where the spinal tap was scheduled, to cancel the appointment. Phew! Bullet dodged. But then the doctor’s assistant called me back about an hour later and said he really wanted me to have a spinal tap because I could have picked up an infection somewhere along my travels. I started thinking about all the things I was exposed to in Ghana, such as this Mona monkey’s rear end:

Yeah, that's a Mona monkey's behind only five inches from my nose and mouth.

And I thought, well maybe it wouldn’t be a bad idea to just get every system in my body checked out.

So I called back the hospital and asked if my spinal tap slot had been taken in the hour since I had cancelled it, and unfortunately they said no, it was still waiting for me! Yvonne, the scheduler, was very nice and answered a lot of questions I had about it. She calmed me down by telling me that the doctor scheduled to do my spinal tap was the one she would want, and that she actually had one done the previous week and it was fine. So, I committed to it.

And you know what? It was not a big deal. All my life I had imagined a SPINAL TAP (aaaaahhhh!) being some super scary procedure where they stick a huge needle in you blindly like pin the tail on the donkey, into the most primordial and sensitive part of our bodies, that my body would involuntarily shudder when my spinal cord was punctured, and I would be screaming and clutching my bed while simultaneously clamping my teeth into a birthing stick.

The experience was actually quite disappointing after all the fantasies I had come up with. I didn’t even have to wear a hospital gown; I just unzipped my jeans so they could scootch it down a bit for the needle placement. I laid on my stomach with my head on a pillow and my arms out to the side (I navigated where the edges of the bed were so I knew what to clutch when my body started shuddering.) When they gave me the anesthesia shot, yes that hurt. But it was brief. Then, using an X-ray machine that provided a real-time image of my spine during the entire procedure, they determined where they would put the needle that would draw out my cerebral spinal fluid (CSF), slowly stuck the needle in me until we all heard a “pop,” and then it was just a matter of waiting while my CSF slowly dripped into the vials that would be sent away for testing. After my anesthesia shot, I felt some strange pressure sensations, but no pain. When they were done collecting what they needed, they put a Band-Aid over my puncture site and sent me on my way. I had to lay flat the rest of the day and the following day, and for the following week I did find I needed to sit after extended standing due to a general wonky feeling, but overall my recovery has been very easy. I haven’t even had a headache, which so many people have after a spinal tap (and who wouldn’t have a headache after all the screaming!).

I forgot to ask them if they would take a picture of me in the process, but I think they probably would have said no. So here’s a picture of the x-marks-the-spot for the needle, taken two days afterwards. The X’s are to the far right. It’s hard taking a picture of your own back!

Mark for the spinal tap (they used the bottom one)

So you may be wondering why there is more than one X. This brings me to the only time I was wondering if I was going to be ok, because after the doctor, who had done this procedure hundreds of times, had marked the spots, the assistant asked, “Which one are we using?” and the doctor says “The bottom one. Ha! Wouldn’t it be funny if I had like 20 x’s there?” And I’m thinking, oh god, my doctor is from Mayberry. He turned out to be a great doctor…he told me exactly what we were doing, how long it was going to take, kept telling me I was doing great, and in the end thanked ME for being positive and willing to laugh, because they had some grumpy patients before me that day.

Once we were done, I was so relieved! But I definitely could not have done this alone; they literally won’t let you have a spinal tap unless you have a driver. I have to give thanks here to my sister Megan, who drove me to and from my appointment and bravely stood with me while the technician gave us the blow-by-blow of the spinal tap, and then took me to Starbucks afterwards. And also to my 82-year-old mom Dorine, who spent the night at my house, ate pizza and watched the first half of “The Secret Life of Walter Mitty” with me until we both passed out, and fed my doggies dinner that night and breakfast the next day since I couldn’t bend over for 24 hours. Thanks, guys.

Two positive things happened almost immediately since they took some of my CSF. One, my vision is back to normal, meaning my eyeglasses once again have the right prescription. Removing some CSF released the pressure in my spine and thereby released the pressure in my optic nerves, which caused my eyesight to go back to normal. Two, I feel more my self than I have since I went to Ghana. These positive changes only lasted temporarily because CSF builds up quickly again after a spinal tap, but I did experiences an overall lessening of the uncomfortable symptoms.

Over the course of talking with doctors I have picked up that there may be a connection with my swollen optic nerves and doxycycline, which I was taking in Ghana daily to prevent malaria. But apparently swollen optic nerves are not that uncommon with young women or women “my age” and that they really don’t know why it happens. My primary doctor said she has a few patients who live with swollen optic nerves and it’s no big deal. They just monitor it.

On Wednesday, my MRI report came back clean. I am awaiting the spinal tap lab results any day now. The doctor taking my CSF said it looked good, clear and without any traces of blood, two good signs that I don’t have a monkey butt disease. Thank goodness.