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!
Saturday, January 31, 2009
Tuesday, January 27, 2009
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.
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.
Sunday, January 18, 2009
the juice's journey
I feel sometimes that the "juice" is making its way through my body, visiting here and there, and having effects of sorts, some good, some less than good. Every day is something different. The respite of pain in my wrist lasted maybe 48 hours, and seems to have reverted. The strength in the wrist has also diminished. Oh, and the headaches are back, as well as a bit of neck pain. I've felt a bit nauseous over the last few days, although that could just be a result of different eating habits during time on holiday. So much to analyse; so little that can be understood.
Mine does not appear to be a "standard" case of MMN, if there even is such a thing. This appears evident from my doctor's written report, and also from the feedback from another specialist who has reviewed my case. He found the data "fascinating", which may be an appropriate term for an observer who hungers to learn from the many cases he gets to see. For me, sitting inside the observation booth , the term is almost distasteful.
They speak of the "yoyo effect" of treatment, and it seems this exists both at a micro and macro level. On a day to day basis, my mood goes from optimistic to bitterly despondent and depressed. And I've hardly been in this long enough to get a macro perspective!
Mine does not appear to be a "standard" case of MMN, if there even is such a thing. This appears evident from my doctor's written report, and also from the feedback from another specialist who has reviewed my case. He found the data "fascinating", which may be an appropriate term for an observer who hungers to learn from the many cases he gets to see. For me, sitting inside the observation booth , the term is almost distasteful.
They speak of the "yoyo effect" of treatment, and it seems this exists both at a micro and macro level. On a day to day basis, my mood goes from optimistic to bitterly despondent and depressed. And I've hardly been in this long enough to get a macro perspective!
Thursday, January 15, 2009
the analyst
I am an analyst. No, I don't work as an analyst, say for an investment company or an IT firm, Rather, I am an analyst. It's what I am, and it's what I do. All the time. Everything around me is the subject of constant analysis - what is going on and why. Cause and effect. How things work and why.
Had a swimming lesson the other day (it's a long story). Not enough to just take the instructor's word regarding the correct way to do things, but I had to understand why they are correct - the physics or dynamics of the swimming form, and why it works. Once I did, the learning stuck much better, because I knew why I had to keep my head down; why my head movements to come up for breath had to be a certain way.
I enjoyed simultaneous equations in school. N variables and N equations. Didn't matter how many there were; as long as there the number of variables equalled the number of equations, exactly one solution could be found. That's what I like. Determinism. That's why I enjoyed the sciences, and despised the humanities. The latter were so wishy-washy, and there was no way you could know your answers were correct. That's probably why my main business runs computer systems that perform millions of complex billing calculations every month on behalf of our clients.
Now, I am living in a world of non-deterministic MMN. There is no direct or simple cause and effect. There is only fuzzyness.
Yesterday, for the first time in at least a year, the pain in my right wrist subsided, and I was able to put pressure on it (like when doing a push-up). So, a full month after starting treatment, it does seem to have helped, with significant restoration of strength in both the hand and wrist. I look forward to my next appointment where some objective tests will be applied. Also keen to see if my leg spin bowling is any better.
The side effect issue still sits there. Having returned from my holiday, it seems the absence of headaches may be related to being in a calm and relaxed environment (pity I can't stay there all the time). Will pick up another large box of nurofen and panadol before we go away again for another week tomorrow.
Had a swimming lesson the other day (it's a long story). Not enough to just take the instructor's word regarding the correct way to do things, but I had to understand why they are correct - the physics or dynamics of the swimming form, and why it works. Once I did, the learning stuck much better, because I knew why I had to keep my head down; why my head movements to come up for breath had to be a certain way.
I enjoyed simultaneous equations in school. N variables and N equations. Didn't matter how many there were; as long as there the number of variables equalled the number of equations, exactly one solution could be found. That's what I like. Determinism. That's why I enjoyed the sciences, and despised the humanities. The latter were so wishy-washy, and there was no way you could know your answers were correct. That's probably why my main business runs computer systems that perform millions of complex billing calculations every month on behalf of our clients.
Now, I am living in a world of non-deterministic MMN. There is no direct or simple cause and effect. There is only fuzzyness.
Yesterday, for the first time in at least a year, the pain in my right wrist subsided, and I was able to put pressure on it (like when doing a push-up). So, a full month after starting treatment, it does seem to have helped, with significant restoration of strength in both the hand and wrist. I look forward to my next appointment where some objective tests will be applied. Also keen to see if my leg spin bowling is any better.
The side effect issue still sits there. Having returned from my holiday, it seems the absence of headaches may be related to being in a calm and relaxed environment (pity I can't stay there all the time). Will pick up another large box of nurofen and panadol before we go away again for another week tomorrow.
Monday, January 12, 2009
good therapy
Important discovery: being on holiday in a fine resort is good for you! Very relaxing over here; side effects have mostly subsided, with the occasional headache. Certainly it seems the quiet over here helps. There is definitely more strength in my hand. Still some pain and weakness, particularly around the wrist. Every day brings different sensations around different parts of my right hand. Cramps in my calves are far less frequent. I'm thinking of developing some of my own objective tests of muscle strength and the like, so I can get a better sense of whether and how the juice works.
Still need to do some further research into the side effects. It seems the extent of mine are not so common. Next visit to the Neurologist is in a couple of weeks, so that should be an interesting discussion. In the meantime, best to make the best of my time away.
Still need to do some further research into the side effects. It seems the extent of mine are not so common. Next visit to the Neurologist is in a couple of weeks, so that should be an interesting discussion. In the meantime, best to make the best of my time away.
Wednesday, January 7, 2009
relaxing in the sun
Daily ritual for the last 6 days: wake up and take some pain and nausea meds. That has typically been enough to set me right for the day. There does appear to be some increased strength in my right hand, which is a little encouraging. Today, the headache was there early in the morning, but subsided. Wrist is especially sore today, but I'm not going to bother with medication (yet).
The last few days on holiday in the Sunshine Coast have been quite relaxing. Am especially looking forward to today: the younger kids are all going away on an excursion or being taken care of, so it's spa day for myself and my wife.
Probably the malaise most affecting me at this stage is "over analysis". I'm an analytical person at the best of times, always thinking, and needing to understand what is happening and why. So trying to work out what is a symptom, or a side effect, or a result of getting away from the daily grind, is almost impossible.
Before I started the initial IVIG treatment, I decided to visit a Traditional Chinese medicine (TCM) practitioner for an alternative diagnosis. Even at that stage, the thought of having regular infusions was very unattractive, so having someone else look at the problem before any treatment and give an opinion seemed like a good idea.
The practitioner told me I had an enlarged liver, that I didn't get enough sleep (correct), and that this was partly because I went to bed each night with too many unfinished things on my plate (he was right about a lot of unfinished things). To TCM people, it's about energy flows within the body. He had found a blockage, and before I could even thank him for the diagnosis, he launched into some initial treatment. I didn't go beyond that, because I am determined to try one thing at a time so as to understand what does and doesn't work.
Here is the paradox: I will accept a formal diagnosis from a western doctor based on blood work and diagnosting imaging, despite the fact that they don't know the cause of the condition, don't have a cure, and don't know why or how the treatment works. Yet with the TCM practitioner, I demand to know the link between his diagnosis and the symptoms - needing him to justify himself. It does seem that our western society trusts medical practitioners despite so many unknowns surrounding much of their work.
Today's challenge: forget all about it while I attempt to detox my body in the sauna, melt away in the spa and at the massage table, and immerse myself in a good crime novel. For me, that's an formula that is empirically proven to work.
The last few days on holiday in the Sunshine Coast have been quite relaxing. Am especially looking forward to today: the younger kids are all going away on an excursion or being taken care of, so it's spa day for myself and my wife.
Probably the malaise most affecting me at this stage is "over analysis". I'm an analytical person at the best of times, always thinking, and needing to understand what is happening and why. So trying to work out what is a symptom, or a side effect, or a result of getting away from the daily grind, is almost impossible.
Before I started the initial IVIG treatment, I decided to visit a Traditional Chinese medicine (TCM) practitioner for an alternative diagnosis. Even at that stage, the thought of having regular infusions was very unattractive, so having someone else look at the problem before any treatment and give an opinion seemed like a good idea.
The practitioner told me I had an enlarged liver, that I didn't get enough sleep (correct), and that this was partly because I went to bed each night with too many unfinished things on my plate (he was right about a lot of unfinished things). To TCM people, it's about energy flows within the body. He had found a blockage, and before I could even thank him for the diagnosis, he launched into some initial treatment. I didn't go beyond that, because I am determined to try one thing at a time so as to understand what does and doesn't work.
Here is the paradox: I will accept a formal diagnosis from a western doctor based on blood work and diagnosting imaging, despite the fact that they don't know the cause of the condition, don't have a cure, and don't know why or how the treatment works. Yet with the TCM practitioner, I demand to know the link between his diagnosis and the symptoms - needing him to justify himself. It does seem that our western society trusts medical practitioners despite so many unknowns surrounding much of their work.
Today's challenge: forget all about it while I attempt to detox my body in the sauna, melt away in the spa and at the massage table, and immerse myself in a good crime novel. For me, that's an formula that is empirically proven to work.
Thursday, January 1, 2009
happy new year?
Woke up with a splitting headache this morning, and for all the wrong reasons. Usually, it might be due to an overindulgence in celebrating the new year. But a Strongbow, a couple of episodes of The Mentalist, and a 1am bed time hardly add up to a big party. So I was quite surprised that the nasty headaches had returned with a vengeance. How long will they continue? I so hate having to keep taking drugs for them, especially ones that don't reall work that well anyway.
There does seem to be a further increase in strength in my right hand. And yet, I am still left with so many questions about this process. Being on the wrong end of the seeming black art of Neurology is not a fun experience. One thing is clear: nothing happens quickly, and during 2009, there is still so much I will learn about my situation and how to best deal with it.
There does seem to be a further increase in strength in my right hand. And yet, I am still left with so many questions about this process. Being on the wrong end of the seeming black art of Neurology is not a fun experience. One thing is clear: nothing happens quickly, and during 2009, there is still so much I will learn about my situation and how to best deal with it.
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