This Is MS Multiple Sclerosis Knowledge & Support Community

Hi to All,

Nico great to hear that you are doing well. Really happy for all that are having some great improvements.

My Son had an MRi/MRV and the report shows no vein abnormality.
& yet the doppler test showed more than 50% stenosis.

Why is it that it did not show up on the MRV would anyone know.?

For all you guys that have had the procedure thankyou for posting your results no matter how big or small the improvements we are very anxious to hear..

3 more sleeps for my Son now!

Kerri when is your next video happening or are you too busy enjoying life?

CureOrBust wrote:

nico wrote:...bear in mind l have had SPMS for several years...

If you were truly "textbook" SPMS, then ANY improvement IS MAJOR!

l agree! l've queried this diagnosis several times, been poked and prodded by several neuros and the diagnosis remains unchanged. before l started intensive physio in 2008, there were days l couldn't lift my head from the pillow, l've come a long way and the CCSVI treatment is hopefully going to be the icing on my cake, as it were! l remain cautious but hopeful. cheerts, nico

Good to hear from everyone and of their improvements, the word's slowly getting out in Oz.

kats wrote:Hi to All,

Nico great to hear that you are doing well. Really happy for all that are having some great improvements.

My Son had an MRi/MRV and the report shows no vein abnormality.
& yet the doppler test showed more than 50% stenosis.

Why is it that it did not show up on the MRV would anyone know.?

For all you guys that have had the procedure thankyou for posting your results no matter how big or small the improvements we are very anxious to hear..

3 more sleeps for my Son now!

Kerri when is your next video happening or are you too busy enjoying life?

Yes enjoying life! I even did gardening for a few hours yesterday and kept upright!! I couldn't believe myself. My daughter said to me "You have not been so tired lately mum." I kissed her - you can't argue with a child's observation! Vid probably later in the week. Kerri

hi folks

been a while since i've had a chance to get on here. wanted to say quickly that it's wonderful to see all these people with improvements. thought i would share ours.

katz' improvements have been fairly low key but we have a little 13-month old who has been a bit crook (just the flu) and also just learned to walk (woo!) so we haven't had much in the way of good sleep since the operation. she's a bit of a handful! katz is still always tired, but the interesting thing in my opinion is that she's coping so much better than I am - the reverse was true before the op. she is able to smile at night when i get home from work, and her spirits are much better than before the operation... from where i sit, the change is profound, though she doesn't really see it.

previously she would be wracked with fatigue - but these days she's really just the same kind of tired that anyone with a toddler who is lucky to get 6 hours sleep in a night, is going to be.

so it's really hard to say that there is a definitive improvement - because she is still pretty tired! - but my personal opinion is that in the past she would have had serious problems dealing with the last couple of weeks, and instead we're going out for dinner tonight after a long hard day with a sick baby.

along with this there isn't much improvement in feeling in her hand but again it's been tough times. hopefully things will improve in the sleeping situation soon and we can report some more decisive news... though honestly I think it's all really great.

everyone else's news is awesome... this is da bomb!

cheers
mark

Hi to All,

Hope everyone is doing well after their procedures.

Kerry thankyou for posting that is very good news. I am so happy for you and for all the others that are experiencing some good changes.

My son is going in tomorrrow hope all goes well and i will keep you posted.

How is everyones walking? Have you noticed some great improvments in your walking or does this take time?

Good luck & good night to all

Kats

congrats to mark's wife, katz (if l have that wrong, l apologise) and all the very best to everyone having the procedure this week!

cheers, nico

Hi Everyone,

Just like to let you all know my sons procedure today went really well.
Proffessor T and his whole team assisting were all great.
He was so tired that he needed to go straight to bed. It was a long day for him he was up from 5am till 5.30 pm when we arrived home .
We managed to meet with Nean and it was great to chat with her and the family.

My son had 4 balloons and they were all diff sizes. size 5 8 10 & 14 from memory. He had a bit of "jungle juice" to relax him. He did well.
He mentioned he had a bit of discomfort around the ears -but when I asked out of 10 what number is the discomfort he said 3 out of 10 which is very good.

The ballooning was done in the Azogys vein and the valve and the right jugular vein.
The left jugular vein appeared to be nomal.
I am not very medical and the above is what I could absorb.

Nean look forward to hearing on your improvements & please keep in touch.

Good luck to everyone else that is going to have the procedure. if

My son has said that if he needs to have it again he would do it no probs.

So now we will just wait & see patiently and I shall post any benefits that we notice.

Best Regards
Kats

kats
good to hear that all went well with your son, fingrs crossed that you both see improvment's soon.
Elaine

Kats - sounds like your son had quite a complex stenosis pattern! Glad he wasn't too stressed by it all. Must be brave.

Phil - are you still having your exploratory procedure tomorrow? Good luck

Helen

Hi Everyone,

I'm writing this on behalf of Nean (I'm her husband), having been inspired by Kats' report on her son which she posted immediately on her return from the hospital.

Nean had her procedure today just before Kats' son and it went very well. We've actually just got home from dinner with the neighbours so you can see that Nean is feeling pretty OK even after the long day she's had. She also had four balloons, both jugulars, plus one behind the ear (sinus?) and one in the azygos. Her main discomfort was lying on her back in one position for the amount of time involved (about 2 hours). I didn't attend the procedure as I tend to faint when my family gets in the hands of the medicos - so I don't know the details exactly.

Was great to meet Kats and her son and husband.

Nean will post any news when she has any. In the meantime BIG BIG thanks to Prof T and his fantastic team, they really are a wonderful bunch of people, and to all Aussie Action pioneers that have led the way and made this all possible.

Now we'll keep our fingers and toes crossed and get a good night's sleep.

Cheers

Nean's husband

So great to hear of latest procedures and to hear the good news is continuing to come. All around things are sounding very positive. Here is link to my latest update.



Have a great Easter, Kerri

Hi Everyone

As my husband said last night my procedure went very well yesterday. Prof T and his team were really great and were able to put me at my ease pretty quickly as I was feeling a bit nervous.
I hope, like a lot of you, I too will be able to report some progress...at least I know my blood is flowing the way it should!
Wishing you all a happy and restful long weekend.

Hi All,

Just to advise that I had my CCSVI treatment yesterday with Prof Tee. 5 balloons for stenoses of both IJVs and azygos. The most surprising aspect was that there was stenosis of the stent inserted in Poland in November at the valve of the RJV. I felt fairly tired and sore-ish overnight but better today. No changes to report, yet.

Despite the fact that I've been tested and/or treated for CCSVI by 4 professionals in 7 months in Europe and Australia and all shown different results, you can't say who's right and who's wrong. It seems to show how fickle and evolving this whole area is. We are lucky to have all these guys involved in CCSVI, developing and honing their skills. I think it is important that we keep a lid on CCSVI in Oz and NZ for the present and not make a big noise in the mass media. That's what happened in North America and as a result of all the publicity, the plug got pulled on Dr Dake. Guys like Thomson and others in this part of the world need some breathing space to research, communicate and fine-tune the CCSVI protocol, IMHO.

Phil