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

Thursday, 24 May 2012

What is a CCSVI operation like?

So this is a blow by blow account of my CCSVI operation done last week. First let me say it wasn't pleasant but I would do it again for the results i am seeing.Also understand that I have a real fear of needles and IV's in particular.

So arrive at hospital and finally get into the ward and onto a bed. You strip and put one of those stupid hospital gowns on that are almost a waste of time - be prepared to just expose all our 'bits' :-) . They take your blood pressure and temperature and all of that. Finally the doctor arrives and we're off.

You get wheeled into the operating theater. It's so cold in there - not sterile cold - freezing cold - eventually they cover you with blankets though. You slide from your bed onto the operating table. Your gown that is meant to be concealing your nakedness is pushed aside a bit to expose your groin. Now part of my worry was where exactly are the going to go in? The picture above shows where they went in with me. Not near the 'bits' which was a relief.

So before they go in they paint on some of that browny/yellow antiseptic stuff - that is freezing cold to! What happened exactly next I'm not sure (you can't see what they are doing) - but i gather it was a local anasthetic then a cathether put in for the wire to be guided into the vein. That catheter is about 100mm / 4" long - a pretty uncomfortable and a little painful experience.

Once it was in it took about 1 minute to get the wire up to my jugular vein. Before I knew it there was a noise in my head of rushing water (thats the balloon filling with water). It didn't hurt at all. Each side was done in three stages. Up near the ear - ear to chin and under the chin - for me the up near the ear vein was really narrow - so he opened it up to 8mm, continued down. Then he came back up to that ear area and opened it to 14mm - that hurt like hell - its in your head and nothing you can do but squirm (and ask for more sedation which i did straight after that bit was done) - now my hurt like hell may be really different to your hurt like hell - still like is said at the outset - it wasn't so bad that i wouldn't do it again - i would - no questions

My left side was really narrowed thus it hurt a bit more. The right side wasn't and didn't hurt at all. That was it - 45 minutes and I was slid across to my bed and wheeled back to the ward (next room). About 10 minutes later the catheter was taken out by a nurse - didn't hurt at all and she holds pressure on your vein for about 10 minutes. You wait about an hour and get a little injection of blood thining stuff - just a needle in the gut - with the double dose of sedative i couldn't give a stuff what they were doing by then. During that time though i noticed my feet and hands were warm again! Hadn't been for ages... Another 30 minutes or so and your allowed to go home.

So there it is. After effects - none. My veins have been sore for about a week - today they aren't for the first time. The results have been fantastic. At the very least get the ultrasound done of your neck veins and see if they are narrowed. Whether you do the procedure then is up to you of course - but at least find out.

Cheers - Mark


before and after CCSVI symptoms report

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 my son doesn’t leave me as stuffed – but still spastic hands

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

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

Before: Typing – Just typing this has made my hands start to go ‘spastic’
1 week after: still spastic hands

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

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 lunch at work to the bank, then another bank, then back to the car which i haven’t done for ages

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

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

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

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

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

7 days after my CCSVI 'Liberation' Op

Thursday, 17 May 2012

next morning video

I had no plans of making a video this early on in the piece... but you gotta watch this

The morning after the operation

The first thing I noticed within a few hours was my fingers and feet were not cold anymore. The procedure itself is not a walk in the park - the groin insertion part hurts a bit, not unbearable. Then when they blow up the balloons its pretty uncomfortable. If the results end up as I am hoping I wouldn't hesitate to go through it again. Neck is still sore the next morning but not so bad that I need panadol or anything. No other noticeable changes as yet - its only been 15 hours or so - will keep the blog updated daily. Just going to rest for the next few days and let the magic happen.

Doctors report as follows:

VENOGRAM/VENOPLASTY
The azygous vein was reviewed and is normal.
On the right hand side there was a typical distal venous stenosis. This was treated with a 14mm
balloon without complication. Upper jugular was also stenotic at jawline, treated to 10mm.

On the left hand side there was a stenosis in the upper neck above the level of the jaw. This was
treated with an 8mm balloon with a reasonable result. I then used a 14mm balloon to treat the
distal stenosis also with a good result.
There were no complications. Procedure performed under Heparin cover, post procedure Clexane, long term Aspirin.

Monday, 14 May 2012

Before CCSVI

So I thought I’d start a new page on me before CCSVI op and after. So I suppose I’ll start with a list of things at the moment that are annoying, frustrating and all of that.

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 :-)

Before: Excercise – No motivation to do any because it hurts and makes me feel stuffed for hours.

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.

Before: Typing – Just typing this has made my hands start to go ‘spastic’

Before: Cold – I am only just sensing this the last few days, but me feet and hands are always cold.

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)

Before: Heat Intolerance – Hot days, hot showers leave me stuffed.

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.

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

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)

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

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 :-)