CCSVI - Aussie Action!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Sydney CCSVI Clinic

Postby Rokkit » Thu Mar 18, 2010 7:23 am

vein1 wrote:I am in the process of setting up the first dedicated CCSVI Clinic in Sydney, and I hope this to be operating by mid April. In the meantime, I am pleased to see and assess MS patients in my office in Newcastle.

Dr Paul Thibault


Thank you so much for posting, Dr Thibault! And, thank you for working so hard to help us.
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Re: Sydney CCSVI Clinic

Postby rosco » Thu Mar 18, 2010 1:19 pm

vein1 wrote:
I am in the process of setting up the first dedicated CCSVI Clinic in Sydney, and I hope this to be operating by mid April. In the meantime, I am pleased to see and assess MS patients in my office in Newcastle.

Dr Paul Thibault


Tremendous news Paul .. solves my problem.
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red/green

Postby hwebb » Thu Mar 18, 2010 2:49 pm

interesting about the color disturbance for PwMS. I always had the opposite problem. Red looks "too red" and triggers a migraine. After the operation - i still have an aversion to red. Green looks the same.
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Postby dean_b » Thu Mar 18, 2010 5:02 pm

thank you so much nico, adolfo and mark for your helpful advice... and best wishes on continuing improvement following your procedures! your pioneer work deserves nothing less. If the procedure can at least halt progression then that is amazing in itself.. For us I'm guessing the radiographer based his assessment on not detecting reflux which would indicate blood flowing back into the brain. Our GP should happily rever us to Prof Thompson so many thanks for that, I'm assuming there will be a fair wait to see him but that's no issue for us :) Fingers crossed that he will find something in a venogram and be able to perform a balloon procedure... thanks again for your replies and we will update at a later stage! cheers :)
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Re: MS & Colour Vision Deficits

Postby kezzcass » Thu Mar 18, 2010 8:56 pm

avantitech wrote:
kezzcass wrote:Hi everyone,

Rather than write down how I am travelling one week after the procedure I have used my normal medium of Youtube. Please see brief update:

http://www.facebook.com/pages/CCSVI-AUS ... 799?ref=ts

Am loving seeing so many joining the discussion.

Kerri :D


Hey Kerri, very interesting!! fatigue, voice and appearance of your face seem to be the first noticeable changes to both you and your loved ones.

The color vision improvement (your increased perception of green) is of significance because there have been studies which correlate colour disturbances with MS. I for one am red-green challenged with up 65% of PwMS affected.*

How many of us have color vision issues?

Have you had optic neuritis attacks before and has your neuro conducted tests confirming some level of deficit in color perception?

*http://www.ncbi.nlm.nih.gov/pubmed/3664369
where the summary states "Colour deficits were found in 45% of patients tested with the Ishihara plates and 42.5% of patients tested with the FM 100-Hue test. 65% of M.S. patients failed at least one of the tests."


Very interesting indeed. I had first bout of ON last December (although have had periods of eye weirdness before). I did do the red/green vision charts with my Neuro at the time and I managed to read them all except for 1. Most took a lot of 'concentrating' before I got it. I will be asking for this test again in April when I see him. I don't think I have ever had a problem with red. I remember in December a friend asked me to cover one eye and look at red and then the other eye - didn't notice anything different. But I never tested green.

Wow I think we are going to see some interesting correlations arising between us all in the coming weeks. :wink:
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howdy from Helen

Postby hwebb » Thu Mar 18, 2010 9:09 pm

it's still early days for me (had the procedure on Wednesday afternoon). I felt like I was going downhill again in the days leading up to the procedure...had strengthening pressure deep in my head, and was suffering from vertigo which seemed to emanate from the pressure point - if that makes sense! Basically, if i turned my head in a way that impacted on the pressure point...my vertigo would increase. If I moved my head up or down...the vertigo would increase. I was getting fuzzy in the mind again in the days preceding the procedure. I really had to think hard to say which hospital I was in and who was the current PM when the nurse asked me just prior to signing the consent forms!

As the doc ballooned this pressure point ...I felt an increase in pressure...but the pressure was released immediately afterward. Yeah I was sore and sorry for myself coming out of theatre...but the pressure deep in my head was gone. I was immediately more mentally sharp, vertigo immediately gone.

I have some other problems which may take time to resolve, if ever - as they are likely due to nerve damage. I'll post again in a week or so when I've had a chance to get out and about. The doc mentioned he only did subtle ballooning, which i believe is because my veins were very narrow to start with. I'm hoping this will be enough and I won't have to go back to get my veins stretched out more.

Helen
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Postby Val1964 » Thu Mar 18, 2010 10:15 pm

I am so happy for everyone ,this is very encourageing for me as my procedure isn't till the 13th april . I am so looking forward to it. I know that sounds odd but any improvement is good. all my best guys.
Val
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Postby nico » Thu Mar 18, 2010 11:07 pm

Val1964 wrote:I am so happy for everyone ,this is very encourageing for me as my procedure isn't till the 13th april . I am so looking forward to it. I know that sounds odd but any improvement is good. all my best guys.
Val


al the best Val, not long now. cheers, nico
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Postby Val1964 » Thu Mar 18, 2010 11:28 pm

thanks nico, I forgot to tell all of you that if you are in Melb. when I come down for surg. I would love to meet you all. we check into thrswanson the aftermoom of the 12th have procedure 12th & check out the 14th. if you can I would love to meet you guys & gals :D
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Postby kats » Fri Mar 19, 2010 4:42 am

Hi to all,

Kerry thanks for the updated video you look great and you sound so positive.

Thanks to all who are posting their improvements it is very encouraging to read the good results.

Everyday everytime I get a moment I log on to read up on your improvements.

My son is booked to have procedure on the 31st of this month with Prof T which is very exciting and we cannot wait for it to be over and then to wait for the results our selves.

He has stenosis in both jugular veins more than 50% in each vein and also the vertebral veins.
Will also keep you posted on how all goes for him too.
Best of luck to all who have had or having the procedure with Prof T he will certainly make some major changes in peples lives.
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Postby Opera » Fri Mar 19, 2010 7:38 pm

Hi

For any one who is interested, Joan's notes on tips about a health program which could be useful for Ms sufferers can be accessed at: CCSVI in Multiple Sclerosis: Endothelial Health Program | Facebook-

You can google this.
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Postby Downunder » Fri Mar 19, 2010 8:28 pm

Well I'm 3 days out from angioplasty (Weds am) and I feel able to post again.

Remembering I'm PPMS and have been so for 16 years.

Initially I felt no different from before the procedure. I did have quite some pain during it whilst the wire was up above my ears. Stenoses were found in both IJVs, (doppler only found stenosis in RIJV), not sure exactly where as I'd zoned out by that time.

But as soon as the wire was retracted from my head, I realised I could hear much clearer and louder. I'd been listening to my mp3 before going in, then later I had to dramatically reduce the volume.

During the rest of the day, I felt as before. I don't think I ever really had brainfog, just chronic headaches. Woke next morning, still felt the same, though I'd have a restful night's sleep. And my neck which is always stiff, just wasn't anymore.

Rested during Thursday, still felt the same, though I had the feeling my vision was sharper. (I've never had much more than slight double vision). That night it was quite warm, but I slept well again. Felt well when I got up and realised I was coping quite well with the heat.

During the day I realised my ankles, which blow up all the time, weren't swollen, even in the heat.

So this morning, (good night's sleep again) I found I could straighten my right hand out for a brief time (not done that in a year or so) and my grip, which I lost 2 month's ago, is slowly returning. ( I do a lot of sewing, so imagine my previous devestation).

So, for having PPMS, I imagine my journey to be very long and very slow. but it is happening. I need the headaches to go away. So far I've had a minor one each afternoon since the procedure, minor, but still there.

I wish I had more dramatic things to post like everyone else, but then there are some tiny changes for the better.

Have a great weekend all
Jennifer
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Postby Salvatore24 » Fri Mar 19, 2010 9:09 pm

Good to hear Jennifer, just stay positive and it will fall into place.

Some news from me, my appointment to see Prof T is scheduled for the 11th of May (yeah, it's a long-ass time away). I briefly spoke to his receptionist, and she commented on how long the list is for MS patients, and that she's been bombarded with calls. To be honest I was surprised to hear that so many people are now aware of CCSVI. Good news nonetheless.
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Postby Brainteaser » Fri Mar 19, 2010 10:14 pm

I think they are fabulous improvements Jennifer. From others, there are 2 levels of improvement - the initial being voice, energy, skin colour, heat sensitivity, flexibility etc, and you've shown some others - hearing and reduced swelling, whilst Kerri showed improved visual colour definition. If you go to the tracking of those from Stanford, especially Marie who is PPMS and whose operation was last May, there is a more gradual improved progress in fundamental disability - walking, balance etc. So, stay confident as even PPMS will get more mileage from this treatment than anything else, IMO.

For my part, I have improved since prior to Poland last November - not dramatically but enough to give me confidence for the future and am looking forward to Prof T giving me a going-over and maybe opening my azygos on April 1 - hmmm, hopefully it's for real!

Just like to say also how fortunate we are here the way things are starting to look here in Oz with those doctors in Vic, NSW and also NZ getting on board with CCSVI - also the fact that they actually seem adept at being able to do it, rather in other places where it is more of a struggle.

Phil
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Postby kiwi » Fri Mar 19, 2010 11:56 pm

@Phil/Brainteaser Can you let me know where/who in NZ is doing the ops/testing. I have had not much luck at all in getting anyone interested
Cheers
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