Things have settled down now. I had just a single day of treatment on Monday (half the usual dose) with the usual side effects, and rest period to get over it.
Looking back on my visit to the Mayo Clinic, I came away feeling perhaps it was a bit of a waste. It's strange - you go to a place like that with an expectation that they will find something very bad, and have the ability to fix it. Then after all the the effort, pain, and expense, and all they do is confirm something you already know! A tinge of disappointment. Yes, relief as well that there is nothing really serious or terminal. Together with that, is the sinking feeling that now I really do have to move to acceptance of my condition of multifocal motor neuropathy, and plan to deal with it for the rest of my life.
From a medical perspective, the Mayo is very impressive. The trip and the outcome has helped me reflect on the level of care I have been receiving until now. If the Mayo ranks a 10/10, then I would say that the medical resources and care available here in Melbourne, Australia probably ranks about 8/10 (my neurologist concurs with my assessment, although he would hardly be one to argue such a point). I am very fortunate to have access to excellent doctors (my neurologist did time at Mayo, and lots of other Australian doctors do same), and the public health system means that my IVIg is free.
On that basis, someone like me going to the Mayo for an assessment is only of moderately incremental value. If I lived in a small town in the US that didn't have such resources, I would have grounds to be less trustful of my diagnosis, and therefore a trip to a major centre would be easier to justify.
Of course this is all with 20/20 hindsight. Still, yet another useful lesson. Time (and quite a long time) will tell if they treatment approach suggested at the Mayo proves to be valuable.
Friday, November 20, 2009
Sunday, November 15, 2009
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.
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.
Friday, November 13, 2009
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 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.
Wednesday, November 11, 2009
Review with The Man
My last day at Mayo started with the onset of a headache. The little brochure they gave me said that one in three people who have a lumbar puncture experience a headache afterwards. I'm now back in Australia, but was unfortunately unable to leave the headache in the US! It's a dull, throbbing pain, punctuated by bursts of intensity whenever I laugh, cough, or suddenly move my head. What I probably need is some solid R&R time to get over the whole experience.
But back to day 5: I finally get to meet Dr Dyck for a review of all of the test results, and recommendations moving forward. He takes a bit of a history, reviews the documentation, discusses it with the other neurologist present, and confirms the original diagnosis of multifocal motor neuropathy, with conduction blocks in right and left arms. I guess the good news is that there is nothing more insidious there, and I am satisfied that enough diagnosis work has been done to find anything else that could be wrong with me. I explain the side effects that I have experienced, and also show him my hand strength measurement apparatus, and he is suitably impressed. He must be 70-odd, and his finger is able to support over 650g!
As regards dealing with the main condition, he has a few interesting insights. Considering the half-life of IVIg being ten days (contrary to what I've seen online), he is more in favour of smaller doses fortnightly rather than a bigger dose monthly.
There are two schools of thought regarding the use of IVIg for MMN: treat aggressively early on to limit the permanent degradation in hand strength, or delay/limit treatment until the condition gets more severe, because the stuff will eventually stop working. His view is more aligned with the latter: that I should take only as much of the "juice" as is needed to ensure my hand weakness doesn't severely impact my life.
It has been nearly eight weeks since my last juicing, and my hand strength has held up reasonably well - the pain that I was expecting as a result of weakness has not appeared. So I'm thinking that maybe a reduced rate might be in order. He also suggests that it's worth considering different brands of IVIg as they are produced differently, and some may be more effective than others.
He concludes with some general comments about auto-immune disorders: get plenty of sleep (I wish!), eat well, exercise, etc, ... and choose life! He asks me where that phrase comes from, and I recognize it from Deuteronomy (30:19). The quote resonates strongly with me, and I've been thinking since that time about how important my attitude is to all of this. The trip has left me with plenty to consider, as much in terms of treatment as as how to adjust my lifestyle. More once the headache subsides.
But back to day 5: I finally get to meet Dr Dyck for a review of all of the test results, and recommendations moving forward. He takes a bit of a history, reviews the documentation, discusses it with the other neurologist present, and confirms the original diagnosis of multifocal motor neuropathy, with conduction blocks in right and left arms. I guess the good news is that there is nothing more insidious there, and I am satisfied that enough diagnosis work has been done to find anything else that could be wrong with me. I explain the side effects that I have experienced, and also show him my hand strength measurement apparatus, and he is suitably impressed. He must be 70-odd, and his finger is able to support over 650g!
As regards dealing with the main condition, he has a few interesting insights. Considering the half-life of IVIg being ten days (contrary to what I've seen online), he is more in favour of smaller doses fortnightly rather than a bigger dose monthly.
There are two schools of thought regarding the use of IVIg for MMN: treat aggressively early on to limit the permanent degradation in hand strength, or delay/limit treatment until the condition gets more severe, because the stuff will eventually stop working. His view is more aligned with the latter: that I should take only as much of the "juice" as is needed to ensure my hand weakness doesn't severely impact my life.
It has been nearly eight weeks since my last juicing, and my hand strength has held up reasonably well - the pain that I was expecting as a result of weakness has not appeared. So I'm thinking that maybe a reduced rate might be in order. He also suggests that it's worth considering different brands of IVIg as they are produced differently, and some may be more effective than others.
He concludes with some general comments about auto-immune disorders: get plenty of sleep (I wish!), eat well, exercise, etc, ... and choose life! He asks me where that phrase comes from, and I recognize it from Deuteronomy (30:19). The quote resonates strongly with me, and I've been thinking since that time about how important my attitude is to all of this. The trip has left me with plenty to consider, as much in terms of treatment as as how to adjust my lifestyle. More once the headache subsides.
Friday, November 6, 2009
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.
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.
Wednesday, November 4, 2009
Blood, Sweat and Tears
My first stop early on day 1 (we're talking 6:30am) is registration, and then an interview with a neurologist, who takes a comprehensive history, and gives me some rudimentary strength and nerve tests. She goes back to order a series of tests, and eventually they present me with a schedule that will keep me busy for the whole week. I keep asking people when I will get to meet Dr House, and some of them get the joke. No sign of Cutty, or anyone looking even half as hot, which only shows how fictional medical TV series are.
1. Blood
This place is a factory. First stop is specimen collection - I have to collect 24 hours worth of pee, and they give me a generous bottle, as well as an opaque bag to keep it in as I walk around. Because I have had fish on the plane, I have to wait until the next day to start this. Then it's next door for some blood tests: I ask for have it lying down because I'm a queasy woose about these things, and the technician is very sympathetic and does an excellent job in taking eighteen tubes out of me. Man, that's a lot of blood!
Next stop is for a skeletal survey. This department is very busy and all appointments are running late today, and I end up waiting well over an hour to be called. They have a few TVs and computers with internet in the waiting area, which is very handy. Eventually they call me in, and x-ray just about every bone in my body. In the middle, someone comes in to tell me that I'm going to be late for the EMG test scheduled for later that day, and they've shuffled it around to the next day, and prepared a revised schedule. I am overwhelmed by how well-organized this place is.
2. Sweat
From there, I go for an autonomic test - something I've not done before. They put you on a table, attach a bunch of monitors, and test how you sweat during certain activities. This test measures how the nerves work that control blood pressure, heart rate and sweating. This was quite innocuous, and because my EMG was moved to the next day, that was it for me.
The next morning, day 2, I had the thermoregulatory sweat test. Now this one is a doozie. You strip down, lie on a bed, and they cover you with this powder. Then they slide you into this "hot box", which is progressively heated up to 38C (100F) over a period of around 45 minutes, and they monitor how quickly and where you do or don't sweat. The powder changes colour to purple as you sweat. The box is all sealed, but has cameras so they can take pictures of you all (or half) purple covered in only a loin cloth!
After a while (and it's not easy to keep track of how long you've been there), the heat gets quite oppressive. Of course you have to lie completely still through all of this, and listen to the muzak they have playing. It was like being trapped in a lift on a hot day with the air conditioning broken down. Eventually, the operator offered to change the music selection - in addition to both kinds of music (country and western), they had some Sheryl Crow, which was the best of what was on offer.
3. Tears
Next test for that day was the big one - EMG. They do a nerve conduction study first. That part consisted of sticking electrodes to my arms, zapping me with electric shocks at various points, and measuring how much I flinched (sort of). Last time this was done, they found conduction blocks in both arms, which is what gave rise to the diagnosis of multifocal motor neuropathy in the first place. Some of the electric shocks are pretty full-on. I've never been shot, but I imagine that's what it might feel like - a very sharp, intense and localized pain at various points on my arms and legs.
The whole thing was being observed by a visiting neurologist from Switzerland. He seemed like a nice enough fellow, and I didn't have a problem with another person watching my pain.
The second part - the EMG - was done by the neurologist. This involved sticking needles into various muscles, and "listening" for the electrical signals going through as the muscles are activated. So, say, with the needle in my hand, he would push down on a finger, and ak me to push upward. The pain is nothing short of excruciating, particularly in a few spots around the fleshy part of the hands below the thumb. After a few on the left side, I started shaking and teeth chattering. He then moved to my leg, and finally did just one on my right arm before deciding it was enough.
After it was over and they all left the room, I broke down in tears. I just felt so awful. Perhaps it was the pain, perhaps that I was holding it in (to the extent that I could) during the test itself, or perhaps I just needed to open the emotional floodgates through this whole process, and that was an opportune time. Eventually, I composed myself, and fortunately that was it for day 2. Back to the room to rest and relax.
1. Blood
This place is a factory. First stop is specimen collection - I have to collect 24 hours worth of pee, and they give me a generous bottle, as well as an opaque bag to keep it in as I walk around. Because I have had fish on the plane, I have to wait until the next day to start this. Then it's next door for some blood tests: I ask for have it lying down because I'm a queasy woose about these things, and the technician is very sympathetic and does an excellent job in taking eighteen tubes out of me. Man, that's a lot of blood!
Next stop is for a skeletal survey. This department is very busy and all appointments are running late today, and I end up waiting well over an hour to be called. They have a few TVs and computers with internet in the waiting area, which is very handy. Eventually they call me in, and x-ray just about every bone in my body. In the middle, someone comes in to tell me that I'm going to be late for the EMG test scheduled for later that day, and they've shuffled it around to the next day, and prepared a revised schedule. I am overwhelmed by how well-organized this place is.
2. Sweat
From there, I go for an autonomic test - something I've not done before. They put you on a table, attach a bunch of monitors, and test how you sweat during certain activities. This test measures how the nerves work that control blood pressure, heart rate and sweating. This was quite innocuous, and because my EMG was moved to the next day, that was it for me.
The next morning, day 2, I had the thermoregulatory sweat test. Now this one is a doozie. You strip down, lie on a bed, and they cover you with this powder. Then they slide you into this "hot box", which is progressively heated up to 38C (100F) over a period of around 45 minutes, and they monitor how quickly and where you do or don't sweat. The powder changes colour to purple as you sweat. The box is all sealed, but has cameras so they can take pictures of you all (or half) purple covered in only a loin cloth!
After a while (and it's not easy to keep track of how long you've been there), the heat gets quite oppressive. Of course you have to lie completely still through all of this, and listen to the muzak they have playing. It was like being trapped in a lift on a hot day with the air conditioning broken down. Eventually, the operator offered to change the music selection - in addition to both kinds of music (country and western), they had some Sheryl Crow, which was the best of what was on offer.
3. Tears
Next test for that day was the big one - EMG. They do a nerve conduction study first. That part consisted of sticking electrodes to my arms, zapping me with electric shocks at various points, and measuring how much I flinched (sort of). Last time this was done, they found conduction blocks in both arms, which is what gave rise to the diagnosis of multifocal motor neuropathy in the first place. Some of the electric shocks are pretty full-on. I've never been shot, but I imagine that's what it might feel like - a very sharp, intense and localized pain at various points on my arms and legs.
The whole thing was being observed by a visiting neurologist from Switzerland. He seemed like a nice enough fellow, and I didn't have a problem with another person watching my pain.
The second part - the EMG - was done by the neurologist. This involved sticking needles into various muscles, and "listening" for the electrical signals going through as the muscles are activated. So, say, with the needle in my hand, he would push down on a finger, and ak me to push upward. The pain is nothing short of excruciating, particularly in a few spots around the fleshy part of the hands below the thumb. After a few on the left side, I started shaking and teeth chattering. He then moved to my leg, and finally did just one on my right arm before deciding it was enough.
After it was over and they all left the room, I broke down in tears. I just felt so awful. Perhaps it was the pain, perhaps that I was holding it in (to the extent that I could) during the test itself, or perhaps I just needed to open the emotional floodgates through this whole process, and that was an opportune time. Eventually, I composed myself, and fortunately that was it for day 2. Back to the room to rest and relax.
Tuesday, November 3, 2009
Welcome to Rochester
Rochester is a long trip for me. First, across the Pacific to from Australia to Los Angeles, then to Chicago. Chicago airport is huge, and a long walk in a hurry from one section to another - having come in on a "regular" 737, but the short trip from Chicago to Rochester is on American Eagle, who fly these little 50-odd seater commuter planes to and from small towns all over the USA.
I can tell very quickly that I'm in the midwest: the flight attendant is fiftysomething, with big blond hair, and a smile that would need to be surgically removed. She's from "round these parts", and is based in Chicago and does these little flights back and forth all day. Someone once told me - always be concerned about a veteran private (in the army): if they were any good, then by that age they would either be a general, or dead!
For a small regional airport, it takes quite a while to get my luggage. The shuttle bus takes a bunch of us around the local hotels, and the driver has an old-fashioned courtesy that's refreshing. My hotel is one of several connected via a superb subway system to all of the Mayo clinic and associated hospitals.
I can tell very quickly that I'm in the midwest: the flight attendant is fiftysomething, with big blond hair, and a smile that would need to be surgically removed. She's from "round these parts", and is based in Chicago and does these little flights back and forth all day. Someone once told me - always be concerned about a veteran private (in the army): if they were any good, then by that age they would either be a general, or dead!
For a small regional airport, it takes quite a while to get my luggage. The shuttle bus takes a bunch of us around the local hotels, and the driver has an old-fashioned courtesy that's refreshing. My hotel is one of several connected via a superb subway system to all of the Mayo clinic and associated hospitals.
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