Wednesday, 13 June 2012

A month after CCSVI operation

Before: Cooking – I love to cook but haven’t for ages because my legs hurt after five minutes. I could sit but chopping etc after 5 minutes my hands went all ‘spastic’. So cooking has ceased much to the disappointment of my wife :-)
1 week after: a bit longer, breakfast for me and jake doesn’t leave me as stuffed – but still spastic hands
16 days after: standing pretty much the same as after week 1.
25 days after: standing longer for sure - gave a 20 minute talk and stood for the whole thing (normally i would sit)!!

Before: Exercise – No motivation to do any because it hurts and makes me feel stuffed for hours.
1 week after: walking to factory 43 once a day
16 days after: not walking but doing a MS exercise regime in my chair at work
25 days after: was able to walk at howqua to ‘rocky mountain’, climb it and walk back. Then walked to the jetty. Later walked from the howqua river up the huge bank to the road. Next day was stuffed – but huge difference in what I am able to do.

Before: Showers – I still shower but it’s far from a hot shower – its mildly warm at best. Then because I’ve been standing for 8 minutes or so I am stuffed for the next hour or so.
1 week after: can have them warmer and no where near as stuffed when done
16 days after: still having them a bit warmer, still not feeling tired as much afterwards
25 days after: having 10 minute warm showers – its lovely - sit down for a minute afterwards and thats it. Considering i was going to buy a 'shower chair' to sit whilst i showered this is a massive improvement. No shower chair for me now!!

Before: Typing – Just typing this has made my hands start to go ‘spastic’
1 week after: still spastic hands
16 days after: seems to have improved a bit – will have to watch that
25 days after: haven’t typed much in the last week or so – will monitor this one

Before: Cold – I am only just sensing this the last few days, but me feet and hands are always cold.
1 week after: improved heaps within the first few hours
16 days after: Its winter so its hard to judge – hands yes – feet not as much as a thought
25 days after: still warm hands – feet on and off – but being winter its to be expected. Bob has cold feet during the day too so i think its just normal for winter.

Before: Fatigue – Just a general feeling that walking outside to spray the weeds for example is a massive effort, so I don’t bother (i do but im stuffed for it)
1 week after: more motivated – walked from D&A to NAB then to CBA in clayton which i haven’t done for ages
16 days after: last weekend went to springvale on saturday – walked way to much and fell over for it on the way back to the car. Had the motivation to walk it though which is good.
25 days after: am standing longer, walking longer - still room for improvement but am loving the extra mobility i have now

Before: Heat Intolerance – Hot days, hot showers leave me stuffed.
1 week after: will know more in summer – but i can have warmer showers

Before: Bladder – It takes freaking 5 minutes to do a wee, and I have to sit down because standing up for 5 minutes leaves me stuffed.
1 week after: improved heaps – just go when i have to go – still sitting – but bladder control/function now very good
25 days after: still going great – in full control once again!

Before: Leg Pain – That tree trunk feeling when I do just a bit too much – throbbing in pain – not pain like i need to take drugs, but need to sit down and get off them
1 week after: nup, thats gone now
16 days after:still gone – even after my long walk through springvale – no throbbing afterwards
25 days after: after my howqua marathon they were a bit sore the next day – no throbbing though

Before: Neck Pain – Again, im only just realizing this – but my neck is sore – I’ve just ignored it (like the cold hands and feet)
1 week after: gone – but a different pain now, feels like jugular veins are sore from surgery, thats all
16 days after: gone – jugular veins not sore anymore either
25 days after: neck is fine

Before: Foot Drop – My right foot just drops – i cant lift it at all which results in walking badly and having to wear the AFO
1 week after: still drops
16 days after: still drops – this is the biggest change I am waiting on – once it comes good my walking should improve heaps (after re training)
25 days after: progress!! I can’t believe it – with my heel on the floor I used to be able to lift my right foot about 10mm off the ground. At times during the weekend i was lifting it 40mm high. Mornings and days I haven’t done too much I can do it – end of the day I can’t. But it is progress and I believe in the coming weeks my foot drop will be gone!

Before: Balance – I can’t stand with my feet together and eyes closed (or open actually) – When moving through a crowded place with people sitting I have to walk very carefully and slowly so I don’t fall on them :-)
1 week after: improved but not great
16 days after: improved a tad more – practicing balancing walks and stands during my MS workout now to try and improve it some more
25 days after: same as after 16 days – improved but still dodgy

So after 25 days i have had some massive results. Such an improvement in ‘quality of life’. Walking up to the ‘rocky mountain’ at howqua was huge for me – not just physically but mentally too – the boys loved it, so did I – getting up there with them tossing rocks down the mountain – it was great fun. So do I push myself every few days – try to get my muscles to wake up again – although the next day im pretty sore in the legs. Or do i just slowly, steadily improve – i dont know.. the day after the rocky mountain was the drive home. Legs were sore, came home and needed some panadol to make it go away – but was able to stand for my 20 talk that day – im not sure what to do – push the boundaries and let my body try and catch up or just slowly do a bit more… im leaning towards push the boundaries – maybe I’ll ask dr. s although he’s a vascular surgeon and probably doesn’t know… hmmm


  1. Congrats to whatever improvement you have! I am sure it is better than before. I wish neuros would take our word for the improvements whether big or small. I know in my case they may seem small but are HUGE for me :) It's too bad they have to tell us what to think :( That is why I have not seen or dealt with one since 2005! A waste of my time and energy.

  2. agree 100% - its such an improvement in our quality of life - i dont care if its a cure or even if it has nothing to do with MS (although that is unlikely) - it makes us better !!!

  3. Thanks for taking the time to discuss this, I feel strongly about it and love learning more on this topic.
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