Saturday, 10 December 2011

Bondage for beginners and other fun things you learn from your friendly neighbourhood Neurologist.

Lapsed blogger due to limited internet thanks to a dead router, and extra crappy health. May be intermittent at best over the next few weeks.

Once upon a time, in a land far far away, I was healthy. Once upon a time I got my fill of medicine watching ER and perving/drooling over Dr Kovac, with his hot Croatian accent. Good times. Fun times. Times to which I wish I could return. But alas, that time is passed and I now have the joy of being felt up by neurologists with whom I used to work.
(Pretty accurate depiction of autonomic testing)

Case in point this past Thursday. Back in June Uberneuro had suggested I have the autonomic testing battery yet again to see how things are progressing. Unfortunately, here in Melbourne, there is only one hospital, one clinic, and one doctor that conducts the tests. This just so happens to be a hospital where I used to locum, in a clinic where I also did a six month placement whilst training, with a neurologist whose patients I used to assess. That's not confronting at all. No. Not at all. No way, no how. Nope. *sigh* Just pass the Tequila. Now where's that bloody worm?

Where was I?

My own work/pride/need a big can of Harden Up Princess, issues aside, the autonomic battery is about as fun as an anal probe conducted by an meth addled lemur on a unicycle.

It begins 48hrs prior to even getting to the hospital when you must cease all medications. You know those ones that keep you standing, stop you vomiting, or crapping or speaking such incomprehensible garble, you need your own personal Rosetta Stone to translate. Yep, those ones. Not even a piddly little antihistamine, when you're smack bang in the middle of the pollen apocalypse. You just know it's all going to end in tears.

Then on the morning, because morning is the worst time of day for anyone with Bob, and the obvious time to do testing, you can't even cry into your Cornflakes, because you are fasting. No water, no salt, no food. And the ever fickle Melbourne decides to finally find Summer after needing the fireplace a few days before, and turns on a 32C day. If I hadn't been so completely dehydrated I would have cried a tear or two whilst I wallowed in self pity.

Poor L-Plater had to drive me. To say he was stoked at the prospect of driving his babbling, brain fogged, staggering mother to her appointment, and then to sit around in the hospital for a couple of hours, may be an understatement. Actually, I think his favourite part was when the sleazy cafe guy asked if I was his sister. The look on his horrified teenage face made the whole day worth it.

You do have to love neurologist humour. It's one step above Dad humour. You lie there thinking "Dear lord, make it stop, please make it stop". Trapped in a never ending comedy hell, where even feigning death or passing out doesn't end the torment. Given that autonomic testing involves been strapped down to a table, the logical place to go was bondage, where questions such as whether a dominatrix takes into account the effects of passive bondage on her clients' autonomic nervous systems? are posited. Yes, this is how I spent the couple of hours of testing. It's a unique approach to relaxing your patients, I'll give him that.

In between these educational S&M discussions, I learnt about living in New York, that the machine used to measure my bp and hr was named Colin and didn't like being called Colleen or Collette, that the giraffe is an abomination in the eyes of intelligent design, and the low down on who was working where these days.

I also did tests like the Q-sart (sweat test), where they put gel on your foot, leg and arm and hook you up to a battery for some fun zapping. Not overly painful, but rather annoying. My results were odd and he admitted he may never have an explanation for why they are the way they are. There were others like the good old deep breathing test where you follow a green light go up and down in 5 sec intervals, and get to feel light headed and giddy.

My favourite would have to be the Valsalva test which I apparently failed so "spectacularly" I didn't even have to do it a second time. YAY Me!  For the uninitiated the Valsalva test involves blowing into a bugle thingy (yes I'm all on top of the high tech medical lingo) and maintain a pressure of 40, for 15 seconds. Pisser is that there is a leak in the device so you have to keep blowing. Bring on that anal probing lemur, because I'd rather be probed by an odd looking pigmy primate, than do the Valsalva again. Having your pulse pressure drop to a consistent zero is not all that it's cracked up to be. Who'd have thunk it? I've had low pulse pressure, 5 or 7, before, but never a big fat zero, and that my friends is mightily unpleasant. Two days later I still have chest and head pain.
So now I am forever banned from blowing up balloons, playing wind instruments, singing, and excessive laughing. Not to mention no more grunting and straining on the loo. Personally, I'm pissed about the no more 80s power ballads belted out in the car to embarrass my children and their friends. And no excessive laughing? Sheesh. What's a girl to do when her dog is surprised by his own fart? Thanks very much Dr Killjoy.

The tilt table test (is this no.4?) was equally fun, and ended early in the piece as he had all the info he needed and he couldn't see the point in torturing me any longer. He did enjoy my descriptors during the process, "blech" and "shite" are now officially in my file. All that university learning has obviously paid off. So after all that, apparently my body doesn't like being vertical. Now there's a shocker. I did have to laugh that I now meet the criteria for POTS. Although, there was the caveat "but it's not quite that simple". Like the Danoz Direct ads I have the "but wait there's more" version of POTS. YAY!  Well today at least. The way my symptoms change who knows what it'll be next week.  Tis nice to have a type for once, even if it is of the iffy variety and completely transient. When I asked him why I've gone from bradycardic to tachycardic he just joked that my body was "trying something new". That there is some fine doctoring, my friends.

The last part was to close your eyes and say when you felt the table was returned to the horizontal, which I passed with flying colours. Now to work out how I can use that in my every day life. You know the whole, "use your strengths to compensate for your weaknesses" theory. Human spirit level perhaps? I did have to laugh when he mentioned that one of his well endowed female patients told him she cheated, because she could feel when her boobs ended up in her armpits. Not that my miniature mammaries can do that. But hey. That really just exemplifies the whole weird and wonderful experience.

I will say he was good at the explanations. He sat down after we'd finished and went through all the graphs and results and explained each of them in detail. He told more bad jokes, plied me with water, let me lay down for a while and gave me a list of suggestions to help, all of which I already do unfortunately. Interestingly, he did say for me I need weight baring and not cardio exercise as I have lost so much muscle mass since August. Apart from the generic effects, cardio is just not going to do anything for my version of Bob.

The only new bit of information was that he thought I'd be a good candidate for monthly intravenous immunoglobulin (IVIG). Of course like most of the options for me, this is damn hard to get in Australia, even if you are fully immunocompromised you struggle to get access. And, yet again, stupidly expensive. C'est la vie. 

So it's all over for another year or two.  After giving him the deed to my house to pay for the privilege of being strapped down, and up, and tortured for a few hours, I managed to get home and fall into coma sleep. Now I have simply to contend with the giant ringworm welts on my body thanks to the ECG and other pads. Thankfully, Dr FB Friends has given me a load of options to help with the painful oozy itching.  (Before anyone asks, there were no hypo-allergenic ones available. Given I had already been 48hrs without meds, fasted and made the trip in, I decided to suck it up and just get it over and done with, rather than repeat the prep process).

So now it's recovery time. Time to live in the Batcave or maybe drag myself out to the couch, catch up on some eps of American Horror Story (please tells me it gets scarier. Because so far its weird, but horror? Not so much), and rest up for a wee while.  Must say a medication holiday does make you truly appreciate what the meds are doing for you. They really are the difference between being able to stand and semi-function and being bed bound. Side-effects be damned, they are here to stay.

Okay I'm off to find a nice corner to pass out in until the exhaustion passes.

Michelle :)

Farewell balloon blowing, singing, laughter and tuba playing, "you're history, no good for me".

12 comments:

  1. Oh, that Valsalva test. Fun. I pass out.

    Add blowing soap bubbles to that list of no-nos.

    Ooh, Dr. Kovacs. Used to have a nickname for him. Dr. Tasty? Dr. Yummy? Something like that.

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  2. You just made a Potsy girl'S night!! Hahaha! I can relate to every detail all to well unfortunately!

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  3. What, no more 80s power ballads? Man I knew you were going thru a rough time, but that is too much!

    I could live without blowing up balloons, always reminds me how large and round my cheeks are. Yep, I know it's weird...

    Have a great day...!

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  4. I don't know what to say, other than you make reading about something I know so little about interesting and funny, and of course really moving at the same time. And now I can't write back without sounding trite! Argh! I am enjoying your posts. That is all. :)

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  5. I also had an unusual QSART test, however I cannot get neither a proper explanation nor the proper advisement so as to make sure I don't have something else going on top of everything else. Why? Because the neurologist that I went to see is literally holding my results hostage. Long story short: She recommended and indeed ordered the QSART, however we don't have the ability to do them in NY, so whilst at the Cleveland Clinic in Ohio I told my rheumy there (equally as clueless) that my neurologist wanted this QSART done while I was there. Yes, an annoying test, but not painful per se. I get back to NY, I call my neurologist and she refuses to speak with me because she's angry that I decided to go to CC rather than The Mayo Clinic, her alma mater. She then calls me a few days later, tells me that the results are abnormal, but says she cannot elaborate because she cannot decipher the results as written. She said "I don't know what all these numbers mean! This is fraud, you should have gone to Mayo." Yeah, well I didn't, so get over it and tell me what is going on IN MY BODY! I calm her down and tell her that I'll call my CC rheumy and ask her to call her. She says, fine. I do so. My rhemy has no problem calling my neurologist to try and clear things up, although my rheumy cannot interpret the results as its not her area of expertise and she has no idea what the test is even used for. My rheumy calls me two days later and says that she's been trying to contact my neurologist but every single time she calls, the secretary tells her that the doctor does not wish to speak with her. In other words, my neurologist is a complete lunatic who is holding my results hostage as she now will not speak to me, nor anyone at CClinic. This is almost two years ago and I have absolutely given up because I'm done playing her drama queen game.

    If I may ask, what did your results say? I have the results myself, but no matter how hard I've tried, I can't seem to decipher them as much as I'd like to. From what I can understand, my wonky results wouldn't be all that unusual for someone with POTS, which is all fine and dandy, however I'd like a certified physician to tell me so, not Google. Then again, it could be indicative of a million other things and my favorite, it could mean nothing.

    Sorry for the rant. I've seen so many incompetent specialists over the years that I've just grown weary of dealing with the medical establishment, period.

    Great blog site, btw.

    best,
    jenji

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    1. man, sorry to hear this, but I have had similar situations. I will go home tonight and look for my qsart results that I also had done at Cleveland Clinic. they had a chart based on age for results. I'm pretty sure I've seen it online also. ttys.

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  6. Very entertaining. I like how you put a comical spin on not such a comical situation. Great job!

    Now I finally know who Bob is, after seeing it explained on a side column on the page.

    Regards,
    Linda

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  7. Elly - I know! How shite is that. No 80s ballads, no balloons, and no damn kazoo, I will now stand and dramatically shake my fist at the universe.

    Amy - no fricken bubbles either? My body truly is evil. PS I like "Dr Tasty", it has a real ring to it. Now if he only existed in real life.

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  8. Jennifer - glad I could make you laugh. It is way to familiar for too many of us. Sometimes you just have to laugh at the absurdity.

    Brahm - I know. I love me some 80s power ballads. They make life worth living. The universe has truly decided to insert the rough end of the pineapple.

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  9. Esme ATLW - not trite at all :) Glad you're at least enjoying them. Part of the blog is about awareness for Bob, part of it is finding the funny and thumbing my nose at it all. I appreciate you stopping by and reading my ramblings. :)

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  10. Jenji - I'm sorry you've been through so much. Some doctors are complete aholes. I've had a few over the years but none like what you've been through. Wow. I don't have my official report yet, that takes 3-4wks to come through. All I know is what he said and showed me on the day. Things like my poor pulse pressure have been going on for a few years now as have the bp and hr oscillations. All of mine was pretty evident just from a quick glance at the screens and all just adds up to the fact that my body can no longer cope with being upright, which we all seem to have in some form or another. This is the first time I've been consistently tachycardic on a test, hence the "POTS with extras" diagnosis. Sorry I can't be of more help.

    Linda - cheers Linda. Bob is way easier to say and spell but I've been using it for so long I often forget others don't instantly know what it is. :)

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx