Thursday, May 10, 2012

The Party in My Spine Continues

The lumbar region in regards to the rest of th...
The lumbar region in regards to the rest of the spine. (Photo credit: Wikipedia)
For me, it's all about the spine. My version of MS is destroying the axons in my cervical spine. In an attempt to thwart this attack, I've been receiving injections of a drug called methotrexate, directly into my spinal column via a spinal tap, or lumbar puncture.

In my previous post I explained how I had been suffering from a side effect of the spinal tap, which is called a post-lumbar puncture headache. The identifying characteristic of this headache is that it can be severe when you're in an upright position, but is mild or nonexistent when you're prone. According to one source, this occurs in between 10% and 30% of lumbar punctures. Many of you have had lumbar punctures for any of a variety of reasons such as diagnostic procedures (MS, meningitis, etc.) or an epidural during childbirth. So, I'm sure a few of you have had The Headache.

If the headache doesn't subside within a couple of days, the standard treatment is called an epidural blood patch. I wrote in my previous post about having a post-lumbar puncture headache from Tuesday through Friday of last week, and about how I finally received a blood patch on Friday afternoon, and experienced immediate and complete relief. Although that was the end of my post, unfortunately it was not the end of the story.

A little over 24 hours later I began to feel headaches again, and by Sunday morning they were back in full force. It turns out that about 10% of the time a blood patch does not provide permanent relief. I waited a couple of more days and then went in for a second blood patch yesterday, nine days after my initial lumbar puncture.

I sit here today hopeful, if not confident, that this episode may finally be behind me. If it isn't, I probably won’t have a third blood patch. I’ll just ride it out. Post-lumbar puncture headaches usually dissipate on their own within a couple of weeks at the worst.

It's been a pretty unpleasant ride, and yes, my back is a little sore too. 

Looking ahead about six weeks, my next intrathecal methotrexate treatment may be a repeat performance. I don't know whether to shrug off what occurred as bad luck which probably won't happen next time, or if there is something about the procedure or about my spine that makes me more likely than average to suffer from a post-lumbar puncture headache again.

Allow me to be clear about one thing. Suspending the intrathecal methotrexate treatments due to this discomfort is not an option, yet. Although I consider success from this treatment regimen to be a long shot, it remains my best option for avoiding complete paralysis in the coming years. So even if I have to suffer in a similar manner while I continue to evaluate this treatment, I will. But I sure as heck would rather not.

There is an option that my oncologist, who is administering this treatment, has offered. There is a device called an Ommaya Reservoir which is essentially a port in your skull where the intrathecal treatments can be given with a syringe in a simple and painless manner. The only problem is that you're walking around every day of your life with a small hole in your skull.

If I ever decide that intrathecal methotrexate is the long term answer for me, I might opt for the Ommaya Reservoir. But I'm very reluctant to have a permanent (although removable) port installed in my skull if within a few more cycles of treatment I might decide that intrathecal methotrexate is not working for me, just like every other MS treatment in my life has not worked for me.

Decisions, decisions.

Does anybody out there have experience with Ommaya Reservoirs? If so, please respond in the comments section here or send me an e-mail at

As Kim was helping me get dressed this morning, after only my second shower in almost 2 weeks (it's hard to shower when you're lying down), and we were gratefully resuming our normal routine, she observed that our everyday problems aren't so bad when compared to what we had been through over the past nine days. This begs the question: why must we suffer adversity in order to fully appreciate our good fortune?

Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.
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  1. This page has a video on it that talks about things that can make lumbar punctures less likely to "go bad". The whole video is interesting, but the part about how to make lumbar punctures better starts at about 7:30.

    You might be able to find someone who uses the most up to date methods to avoid future discomfort. Of course, you probably know all this already, but I thought I'd mention it just in case it was new.

  2. This is really good info and I'm glad to get it.

    Knowing the great attitude you have, I'm guessing that 'youre putting the best face on this so may I just say "AAARRRGGGGGGGH!" for you!