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.
Showing posts with label rochester mn. Show all posts
Showing posts with label rochester mn. Show all posts
Friday, November 20, 2009
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.
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.
Subscribe to:
Posts (Atom)