Blood Patch

With apologies to Neil Young, it's a case of out of the arm, and into the back. That's probably enough of the song lyric mash-ups too. The blood patch is a procedure where they draw some blood out of your arm, and inject it into the spot where they previously did the lumbar puncture (or epidural block, or whatever). The blood congeals, and closes up the hole in the dura and thus stops the CSF leak. That's what is supposed to happen, and the good news is that it worked! The headache subsided after a short time and have all but gone. I've been resting all weekend, and looking forward (not!) to another infusion on Monday.

I found the protocol differences between Australian hospitals and the Mayo clinic to be quite interesting. At the Mayo, lumbar punctures for the purpose of extracting some CSF are mostly done by a technician without the aid of imaging, and they only require you to rest for 30 minutes following the procedure. When I had mine done earlier this year, they did it under x-ray to make sure they found the right spot. It could be my neuro requested that because he knows how much I hate needles, and to make the experience less uncomfortable. The other thing they do here is make you lie flat for 2-4 hours afterwards, to ensure the hole closes, and minimize risk of a CSF leak.

This might just mean that my Mayo Clinic experience is finally over, some days after my return. Have been reflecting on the whole thing, and will post about that shortly.

The tap that keeps on tapping

With apologies to Cyndi Lauper, there's a hole in my back that comes all the way from Rochester. The headache that I've had since last Friday is most likely a result of a CSF leak. This is a side effect of the lumbar puncture I had at the Mayo Clinic, where they stuck a hole in my back to draw out cerebro-spinal fluid, and the hole has not properly closed.

So what's the solution? Poke my back again, and this time inject some of my own blood which will help close the hole. I'm booked into go to shortly to have this procedure done.

This is really getting to me. I agonized as to whether to just keep resting and hope that the hole closed on its own, or to have another uncomfortable procedure to close it, and decided this morning to take this route. It should give me a little more certaintly that the headache will stop once and for all.

Of course I also have to book in for more IVIg juice, and have decided with my neuro to just do one day (instead of the usual two), and do that on Monday after a weekend of rest.

So many tests, so little time

Day 3: Spent a few hours in the morning trying to move one of the tests forward, because it wasn't scheduled until the following week. While they give you a schedule, you are actually able to sit and wait for any of the tests on 'standby'. I am very surprised to find out they get a reasonable number of 'no shows' for appointments. Anyway, they are unable to help me, and eventually they take my mobile number and promise to call if they get an opening.

Later that day is the MRI - the appointment was a "double header", and was meant to go for two hours. After filling in the expansive questionnaire, they take me to get an IV put in because this will include contrast. Now I understand why they are asking me about kidney function as well as the usual questions about metal bits inside my body. Of course I get quesy but the IV goes in easily. Turns out the needle is made of plastic (it has to be, because you can't have any metal bits in the MRI).

Usually, I'm pretty good at lying flat and doing nothing for an extended period. First part is the right arm, and for that I'm lying flat on my back with the arm at my side. You really do lose a sense of time lying in that huge thing. Every now and then they say "this one will be 3 minutes" and off it goes, clicking and whirring and pounding away. Eventually, they slide me out and we do the next set with my left arm wedged up - have done this before and it's quite uncomfortable. Then they push some contrast material in through the IV, and do a few more in that position. Finally, I come out, and go back to lying flat and they do the right arm a few more times now that the contrast material is in. Turns out I was in there for over three hours of this stuff.

Day 4: I had managed to switch my lumbar puncture to Thursday instead of Friday, although when I get there, it turns out I was just switched to standby. So that's what I do, and eventually they call me. They don't do this under x-ray; just in a little treatment room with me lying on my side. It is an unpleasant experience, and along the way the needle nicks a nerve somewhere, and I very briefly feel a sharp pain down one leg. After it's over, I lie flat for a while, so as to let that little hole in my back close.

In between this and my next appointment, I manage to fit in a massage at the local spa. Nice to see there are some people in Rochester who make me feel good!

Later that afternoon is the last one on the list: a sensory test. This is the one I had kept trying to bring forward; must be popular! While I sit there, the operator tests my ability to feel various things: light touch, cold and heat on my nails, hands, and feet. This one is quite innocuous, and goes for about an hour.

Finally, all the tests are complete. All that's left is the review.

and the results are ...

I really need to learn to adjust my expectations. The spinal tap was supposed to explain/reveal so much about specifically what condition I had, and the reason behind the side effects. Instead, the results are inconclusive, and I am left feeling flat, exhausted (is it the hot weather, the return to work, or a side effect?), and as uncertain as ever.

The protein levels were elevated, but not sufficiently to indicate CIDP over MMN. There was slight inflammation, but not sufficiently to confirm aseptic meningitis. Could be that the meningitis was more clearly indicated if we had done the spinal tap sooner after the initial IVIG treatment (it's been over six weeks), and now we are seeing only a residual inflammation. So, to summarize the test results in lay-speak: "it might be this, but on the other hand, it could be that, and the side effects might have been because of the other".

Bottom line: my neuro is putting me on a short (three week) course of Prednisone in the hope that it might reduce the inflammation, and therefore the headaches. They may also have an effect on the primary condition. And I am left still wondering, and have to pick up some more Panadol - the bulk size *sigh*.

that was spinal tap

A spinal tap, or lumbar puncture, is not a pleasant experience, although in hindsight, like so much of this, the anticipation is far worse than the procedure itself. It was done as a day procedure, and not content for just my wife to accompany me, my mother had to come along as well (despite anything either of us could say to dissuade her). In the waiting area, we spotted what looked like a Greek family accompanying someone who was being admitted. They were a party of six plus the patient, so I guess my "entourage" was relatively small.

The whole thing is quite simple, and done under X-Ray. So I'm lying there on my side, and there's a big X-Ray apparatus that slides over the top of me, and the radiologist is able to see live pictures of exactly where to put the needle in so he gets the right spot. Fortunately, he did it quite well, and it worked first time. Indeed, all the of hospital staff were fantastic - very friendly and helpful. Funny how all of the people in the room put on four-part X-Ray "flak jackets" covering every part of their body while I'm lying there in just a gown.

It takes several minutes for the cerebrospinal fluid to leak out of the hole they make, so I'm making small talk with the guy to pass the time. After it's finished, I suddenly get all sweaty and shaky, but this passes after a few minutes. Perhaps the relief of it being over. I had been anticipating this for several days since my appointment, and it has probably contributed to slightly worse headaches than usual.

Afterwards, I have to lie flat for two hours, just in case the hole in spinal sac containing the fluid does not close properly. Fortunately, this appears to be OK, although my headaches have been worse since the procedure. The information sheet advised of possible headaches after having a lumbar punture - is this a side effect resulting from the procedure to help deal with the side effects? The recent heat wave, and my return to full time work after a break may also been contributors to this. Should get some results in a couple of days, which will hopefully give answers on some burning questions, and perhaps an end to these headaches!

more tests

Had a review with the Neurologist today, which confirmed that remains some increased strength in my hands after the initial IVIG treatment. It's not back to 100%, but it's better than it was a couple of months ago. Being just the first treatment, we must now sit back and see how long it lasts.


Some questions remain unanswered, like why I still have headaches, and he suspects that I may be suffering from an uncommon side effect of IVIG - aseptic meningitis (aseptic as in not the nasty form of meningitis that is really dangerous, but rather the benign one that gives headaches instead). There is also still some doubt as to whether what I have is MMN or actually CIDP. He expressed this possibility earlier, because of the way certain nerves were affected, and this doubt was also indicated by comments from another doctor who reviewed my case, and asked for further information.

So the obvious thing to do is to stick a needle in my back and extract some fluid - the magical cerebrospinal fluid which contains (we hope) the answers to the mysteries that lurk within my body. The lumbar puncture, or spinal tap, is something I've seen plenty of times on TV in medical dramas. I guess the only good thing about having one is that I won't see it - I'll be facing the other way trying to think of something distracting. Do you think they'll let me listen to my iPod during the test? My fear of needles keeps being tested by all these damn tests and treatments, and is something I will just have to get used to.