Friday, 26 November 2010

Knock On Wood: Two Weeks Post Angioplasty.

 (photo)

Well it's been two weeks since my ballooning, so I thought I should do an update.

First of all I should clarify, I didn't have a stent inserted with the ballooning.  Current stents are designed for arteries which are structurally different to veins.  Stenting is not recommended for jugular veins at present (although some countries are doing it) and complications can arise.  Personally I'm quite happy not having a foreign body stuck inside my neck.  Jeff is enough to deal with, without adding risks of occlusions, reactions or stents that may go on holidays and travel to your heart.

The procedure I had involves the insertion of a balloon into the vein which is blown up to stretch the walls of the vein to snap the fibers and hopefully stay open with the force of the blood flow.  Think of it as your favourite pair of comfy undies with the overstretched elastic.  The idea is to go from uncomfortable new tight elastic undies that cut into your muffin top, to blissful lying on the couch, with a piece of cake or bag of Dorritos, no bra, manky ugg boots and over-sized granny undies, comfiness.  Hopeful those fibres will stay where they are and not snap back.

Recovery has been slower than I hoped thanks to the fickle nature of Bob.  Stupidly I thought I would be fine after a couple of days like a 'normal' person.  You'd think I'd learn by now.  Everything takes longer to heal with Bob.  Hell, even a papercut takes a year and a half to heal with Bob.  So why I thought this would be any different I don't know.

The feeling of being punched in the neck and groin is slowly passing and hopefully given another week it'll just be a twinge.  I think I may have overdone things a bit in my haste to see if there has been any change to my functioning (eg trying to scrub the bath) which also hasn't really helped things.  Plus this pesky pestilence from the monkey boys refuses to give in.  Just when I think I have it licked, the bastard raises it's ugly head again.  I'm beginning to think it is the Terminator of pestilence.  Just when you think you've frozen it with liquid nitrogen and blown it into little pieces, it melts and reforms into weird looking Agent Doggett guy from the X-Files, determined to take out my tonsils.

I went back to my physio for review this week.  I have learnt that my anal need to have quantifiable data is a tad unusual.  I have given my physio no end of amusement as her first patient to ever request an assessment pre and post a procedure.  Apparently, normal patients don't want to sit through fatigue scales, balance tests and the like, they just focus on getting the procedure done.   But hell, I've never claimed to be normal.

So the results are in, and I've had improvements.  Not, totally cured, going to climb Everest and run the New York Marathon type of improvements, but improvements none the less.  I wont bore you with the nitty gritties but simply:

  • My balance has improved.  Rather than flapping my arms like a mad woman and falling over whenever I try to balance, I actually managed to stay upright on my right leg for 30 sec with minimal arm flappage.  Woo Hoo!  I'm excited.  Big Kev Excited people.
  • I was able to walk an additional 57m in the 6min test. 
  • My strength has improved from wet tissue to soggy soak and maybe even dry sock on my right side.
  • My fatigue scores have improved.  Not to normal levels but I am less abnormal.
  • I still have a marked difference between my right and left side, with the left being consistently pathetic, but both sides have improved.  For those who have asked, I still have no idea why I have such a marked difference and my physio could only tell me it was abnormal, but not why.
  • My shakiness was drastically improved.  Normally if I strain physically (eg stand up) I am like a human Shake Weight.   But on review I had minimal shakage.
  • Considering it was 32C when I did my review I should have been far worse (it was 24C when I did my first assessment) so that in and of itself says I've had improvement.
So overall, my baseline has improved which is a good thing, and thanks to my analness, I have the objective data to prove it.  So to those who say any improvements from treating CCSVI are a placebo effect (that's you  douchey neurologists) I say bite me baby. 

Subjectively I've had improvements as well:
  • Nausea is still at a minimum.  I've had a couple of times where I felt the first strains of nausea welling up (mostly on particularly hot days), but that's it. I'm still bloated, crampy, irregular or way over regular, so the gastric issues are still there, but this one factor is now missing.  If this is the only long term effect of having Jeff slapped around I'm pretty stoked.
  • Still no migraines (insert me doing a little dance).  I've had some headaches but these have been minimal and overall I've had a total of 2 Nurofen Plus in the past two weeks, whereas pre-angioplasty I was eating them like candy.
  • I stood up in the shower and washed my hair.  To those without Bob this sounds rather unimpressive, but rest assured those with Bob will all be breathing a collective "Whoa" in amazement at such a feat.  I haven't done this since I brought my shower chair about 8mths ago, and even before that I used to sit on the floor of my manky shower to wash my hair.
  • Apparently I'm sharper.  I don't know if I believe this one, but my family, friends and even my physio pointed this out.  Normally I have trouble finishing my sentences thanks to permanent brain fog.  I have trouble finding words, or even following conversations.  This, whilst not back to pre-Bob levels, has all improved.  I even spoke to a girlfriend for about 30mins on the phone and managed to stay coherent.
  • I've been told I also have a little bit of colour in my face now.  Not to be pasty is kind of weird.  I'd become very used to rocking pasty chic, so moving from green tinge to normal pale is a novelty that I am quite enjoying.
Unfortunately some things remain the same:
  • My pooling is unchanged.  
  • My hr and bp have remained pretty at pretty much normal levels of abnormalness (I took multiple readings the week pre and post), though my fluctuations don't seem as extreme and my systolic pressure is generally higher.  My hr has been somewhat higher and I've been having more tachycardia.
  • Still having issues with heat intolerance, though I do think it has lessened a bit, in that I can do a little more than before even on a hot day and am recovering a little better.
So that's where I am now.  I'm enjoying and appreciating the improvements and not sweating (Ha! feel the irony) the things that haven't improved.  The IR who did my procedure said he was unable to open Jeff as much as he wanted so I was not expecting a panacea.  As I've said previously, I didn't go into this looking for a cure and I am aware that the research is in it's infancy and there is still controversy as to why this would cause any improvements, but I am happy to ride the wave, or go with the flow (love the play on words) as my best friend suggested.

Funny how a little bit of blood flow can make you feel a whole lot better.  Damn that brain and it's pesky need to drain.

I will be sending all the pre-post data to my IR and cardio, for their review.  I will also be pointing out to the IR that if he has more Bob patients, that he needs to up the drugs, thanks to our tendency to not feel the affects of anesthetics (we're lucky like that).  Why I didn't even think of this beforehand I'll never know, you'd think the fact that the local anesthetic barely worked (OW!) when I had my last arterial line would have stayed in my mind, but no brain fog won once more.   If I have to have this done again I'll be requesting enough drugs to knock out an elephant, and then some.  I will also be asking my IR for some pics so I can show you the new eunuch Jeff.

So I will continue to feel up every piece of wood in my vicinity in the hope that I wont jinx myself by putting my improvements out into the ether.  Any additional wood touching anyone wishes to contribute will be more than welcomed.

Cheers
The Un-puking Michelle :)

Knock on Wood, Amii Stewart (1979), what else could I play?

13 comments:

  1. that's wikid news! and the shower fact... made my jaw drop in amazement and happiness lol. and the sweating this too... i hate it lol. my cardiologist always says the symptoms are from my heart rate being too high, but even if I am on a beta blocker doing the trick... I still feel like crap. Blood flow is a major thing I think. I'm so glad to hear, with them not being able to stretch it as much as they wanted, that you're still having improvements! Lets hope once the punching pains go away you'll notice even more :)

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  2. Congrats on symptom improvement, and I'm sorry it didn't help get rid of everything, although I'm sure you are thrilled with the result you got. I am glad that you are free from the nausea and the headaches, especially! Now, if only mine could go away.

    Patron Saint of Jeff Banishers, pray for us!

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  3. Ash - the whole thing makes me wonder what part of my symptoms are vascular and what are neurological. Or even if I have two different disease process going on that have been stuck under the one label. It's so easy to attribute everything to Dysautonomia as it affects so many body parts. My small fibre neuropathy certainly hasn't improved with this. Overall though, I'm not too picky as long as the changes stay.

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  4. The improvement is awesome news Michelle. It's always exciting when something actually works. After all that you've been through with Bob and Jeff you deserve something that makes you want to do the happy dance. I hope you continue to see improvement!

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  5. Ericka - thanks I'm pretty stoked myself. Just being nausea free and not throwing up has to be a plus in the energy stakes. Now if we can find a way to rid you of your crappiness, that'll be my Christmas wish for you :)

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  6. Michele - I sort of don't know how to react to something working, it's a strange place to be in. This whole process has been so out of the blue. I never thought they'd find anything on the MRI and I certainly never thought fixing Jeff would put the kibosh on my nausea. Maybe I'll have to post a video of me doing the 'Nutbush' i celebration, that's really about my level of dancing prowess. :)

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  7. really pleased for you michelle, we all know how debilitating this thing called bob can be. a reduction in symptoms is such a plus.x

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  8. Still here reading. Not so pedantic on the comment front latterly...

    Thinking of you and wishing you well.

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  9. So so so glad you've had improvements across several areas. That is wonderful, and even a small improvement can made a big difference to quality of life.

    Would you mind popping into my head and being a bit anal for a while? (Me and medical stats/concepts are not a good mix...I haven't understood a single thing a doctor has said to me over the past 13 years. Except for one whose dianogsis was, 'well...your brain pretty much exploded.' That one, I got.)

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  10. I know this is a year and a half later, but I gasped in appreciation when you said you stood up in the shower and then laughed as I read out the line about how little this would mean to those without BOB.

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    1. Yep, pretty exciting for us, no so exciting for regular folk. I Must admit at the time I was pretty excited :)

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  11. Michelle, do you still feel like the angioplasty was worthwhile? I had planned to mention also that my name is Jeff and I am sad that my namesake caused you issues.

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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