CCSVI - Aussie Action!

[smokey]

Smokey,

The initial (pilot) clinical trial @ the Alfred has already begun (first 20-30 angioplasties) and an evaluation of these patients' clinical outcomes in May-June will determine an expanded clinical trial's framework. Evaluations will probably continue over at least 18 months.

This process will ensure angioplasty procedures:
1. will continue;
2. will be conducted with oversight of a medical research review board; and
3. the studies & data ultimately will be peer reviewed by being published in reputable scientific/medical journals.

Cheers,
..Adolfo

Thanks Adolfo.

Prof. T intends to consult with neurologists at the end of the pilot clinical trial.....could take quite a while to put together a joint research proposal - and very challenging to structure it!! I can't imagine many people would be stepping up to be controls! I can appreciate fully why further trials needs to occur, but it's going to be difficult to wait!

Regards.......Smokey

[CureOrBust]

Hi everyone - well, saw Prof. T today and here are the results.

'The superior right internal jugular has a stenosis of greater than 50%. There is also a mid-vein stenosis present measuring greater than 50%. Left jugular vein all normal'.

I'm confused did you have a consult with him or an actual angioplasty? From what I understand, he does not have the doppler equipment, at least not at The Alfred.

And yes, it's true that Prof.T is not accepting any new patients, and currently he has a waiting list for MS/angioplasties . He will consult with neurologists May/June '10 and hopefully begin a clinical trial.

Now I am confused AND worried When you say he is not accepting any new patients and has a waiting list, does that mean that those (ie me) who have been booked for an initial consult, will not be scheduled for the angioplasty?

[avantitech]

Have my ultrasound on Thursday morning in Melbourne....here's hoping. See Prof T on Friday.....here's hoping even more!

Smokey,
was the outcome of today's appt. with Prof that you are on a waiting list or are you scheduled for a venogram and if so when?
..Adolfo

[dado84]

Hello there everyone

I had my venogram at alfred with professor Thompson on thursday. My both jagulars and valves within it are perfect as well as azygous . Been quite dissapointed with the results and still cant believe that ccsvi is not part of my RRMS. I had doppler ultrasound couple of months ago which showed jagulars in fine order with no stenosis or reflux but there was mild reduced flow in vertebral veins. After learning about professor Thompson through this site immediately i contacted him and arranged appointment. He informed me at our appointment that reduced flow in vertebral veins is not a problem as there is lot of them so if one is blocked blood will take different vein amongst many to travel down in other words there would be no reflux issues etc. He told me that someone will get back to me with info of the date of venogram and possible procedure which i was very amazed with. Anyway after yesterday i been very down as i was really thinking that CCSVI was correct path of the MS mystery maze. But i guess life is not that simple after all. Even though i didnt contribute anything to this site as a new member i will do in other threads.Anyway thank you guys so much for your posts. Very best of luck to the ones who had CCSVI procedure and for those ones that are about to find out that they have CCSVI because so far it really shows great promise even though a lot of proffesionals including Professor Thompson thinks that CCSVI is probably another unfortunate thing that some MS patients have. And last but not least the ones like me whose results proved negative, guys CCSVI door is closed but another couple of doors are opening first and likely the one to put the end to MS being stem cell therapy. Lets concentrate on that.

Cheers to all

[ozarkcanoer]

dado,

I'm so sorry CCSVI did not work for you. It seems that it is just a piece of the puzzle. I hope that further research will clarify what this puzzle piece really means for ALL of us. Good luck in your future quests for relief from the MS monster.

ozarkcanoer

[Opera]

Hi Dado,

I read somewhere that stenosis can occur in the smaller veins as well which cannot be detected with the technology currently available. Perhaps this may be the reason your test came up with a negative result.

I wish you the best of luck.

[smokey]

Hi, just to clarify.....I was scheduled for a consultation with Prof. T, not an angioplasty. I'm glad I had the consultation. I'm clearer about the/my condition, if not what it might mean for MS! I guess we're still all in the dark on this one.

My understanding is that those whose ultrasound results meet the criteria for CCSVI but who are not currently scheduled for angioplasty in Melb will be placed on Prof. T's waiting list.

[nico]

Hello there everyone

I had my venogram at alfred with professor Thompson on thursday. My both jagulars and valves within it are perfect as well as azygous . Been quite dissapointed with the results and still cant believe that ccsvi is not part of my RRMS. I had doppler ultrasound couple of months ago which showed jagulars in fine order with no stenosis or reflux but there was mild reduced flow in vertebral veins. After learning about professor Thompson through this site immediately i contacted him and arranged appointment. He informed me at our appointment that reduced flow in vertebral veins is not a problem as there is lot of them so if one is blocked blood will take different vein amongst many to travel down in other words there would be no reflux issues etc. He told me that someone will get back to me with info of the date of venogram and possible procedure which i was very amazed with. Anyway after yesterday i been very down as i was really thinking that CCSVI was correct path of the MS mystery maze. But i guess life is not that simple after all. Even though i didnt contribute anything to this site as a new member i will do in other threads.Anyway thank you guys so much for your posts. Very best of luck to the ones who had CCSVI procedure and for those ones that are about to find out that they have CCSVI because so far it really shows great promise even though a lot of proffesionals including Professor Thompson thinks that CCSVI is probably another unfortunate thing that some MS patients have. And last but not least the ones like me whose results proved negative, guys CCSVI door is closed but another couple of doors are opening first and likely the one to put the end to MS being stem cell therapy. Lets concentrate on that.

Cheers to all

firstly, l am really sad to hear that ccsvi is not a factor in YOUR MS disease progression. However, it must be noted that your results are consistent with the results by the recently undertaken Buffalo Study which indicated that approx 62% of MS patients had CCSVI and that it was more likely to occur the longer a patient had MS. Therefore, whilst it is apparent that CCSVI is a causitive factor in MS for the MAJORITY of MS patients, it is not appropriate to state that it causes everyones MS. I can only hope that CCSVI continues to be treated as a vascular issue which a majority of MS patients happen to have; the result of unblocking veins on MS symptoms is still very much a work in progress. I hope and pray that a solution is found for you sooner rather than later.
Cheers, Nico

[Brainteaser]

XX

[Kyles]

I had a consultation with Prof Thomson on 8 April and he definitely told me that he is not taking any further bookings for balloon angioplasty until he has completed and evaluated the 25 he currently already has booked in. He indicated this would be June.

As I live in Canberra, he recommended that I speak to Prof Bester at St Vincents in Sydney as he is still taking bookings as far as he knows and I would be more likely to get seen to before June.

I called Prof Bester and sent my Ultrasound results to him on 9 April and am awaiting a response.

Keep you posted.

Kyles

[avantitech]

I had my venogram at alfred with professor Thompson on thursday. My both jagulars and valves within it are perfect as well as azygous. Been quite dissapointed with the results and still cant believe that ccsvi is not part of my RRMS. I had doppler ultrasound couple of months ago which showed jagulars in fine order with no stenosis or reflux but there was mild reduced flow in vertebral veins.

..... though a lot of proffesionals including Professor Thompson thinks that CCSVI is probably another unfortunate thing that some MS patients have.

....the one to put the end to MS being stem cell therapy. Lets concentrate on that.

Dado84, this is very interesting...and good on you for contributing...it seems you are open minded and interested in finding answers...if you are the exception to the rule then your case should be studied more not less.

If you don't mind would you be able to clarify a few things to help us understand your case?

To be defined clinically definite MS and not CIS (Clinically Isolated Syndrome)http://en.wikipedia.org/wiki/Clinically ... d_syndrome:
1. Have you had 3 or more attack events? When diagnosed? Current symptoms?
3. Did you have a lumbar puncture which found oligoclonal bands in your CSF?
3. Did MRI scans confirm several periventricular plaques?

Other things to consider:
Have you had any MS drug treatment yet?
Have you been screened for Hughes Syndrome?http://en.wikipedia.org/wiki/Hughes_syndrome
Have any of your doctors considered differential diagnosis to MS? http://www.mult-sclerosis.org/different ... nosis.html

Lastly, folks there are no easy answers to complex problems.

Stem cell research may be regarded as the holy grail of potential "cures" for many diseases but is yet to yield practical, mainstream medical solutions. I'm all for research, have got 2 family members in the medical research community and I would volunteer if and when Aussie trials are begun...but when it comes to buying a "ready made stem cell solution" from overseas that can cure all major diseases (try to find one that they don't cure) it's a Caveat Emptor situation.

Even those who have been treated via endovascular liberation procedures cannot be classified as "cured" but rather many if not all their their symptoms are at least alleviated if not extinguished, health and quality of life thereby is improved with a low risk of complications.

Remember at present we cannot be un-immunised from our immune system's exposure to our CNS that's why stopping the cerebrospinal vasculature from leaking and restoring a more normal venous return pathway will not cure MS but rather reduce further exposures to reactive immune cell populations.

Prof Zamboni himself has never stated that CCSVI is the cause of MS, but rather that there is a significant association between truncular (large vessel>4mm) Venous Malformations of cerebro-spinal vessels, reflux of deep cerebral veins and MS.

The International uni0n of Phlebologists which includes Interventional Radiologists such as Prof Thomson agree and accordingly in their latest consensus document they published a protocol of treatment (i.e. venogram & venoplasty).

Cheers,
..Adolfo

[smokey]

From a CTV W5 report on CCSVI treatment in Kuwait. Sinan is an interventional radiologist:

'Sinan says all of the patients saw improvements in their MS symptoms, with some noticing "dramatic" results. "On one day, on March 3, we did three patients. Two had dramatic improvements on the table and started crying because they couldn't believe what they were feeling," Sinan reported. He says patients with more severe MS reported fewer improvements, but did notice feeling less stiffness and more energy. Those with less severe disease, reported up to 90 per cent improvements in their fatigue and numbness in their hands and leg. "In one case, the patient couldn't see from one eye and started to be able to see," Sinan reported. Sinan said he's confident the results he saw were not the result of the "placebo effect," a phenomenon in which patients fool themselves into feeling better by an otherwise ineffective treatment. "If this is a placebo effect and I have MS, I would want this placebo effect," Sinan said. "It is amazing the kind of improvements the patients say they have. It cannot all be attributed to placebo. Not being able to see and then being able to see, better bladder control, end of foot drop -- that cannot be placebo.'

'The procedure will not be performed to treat MS per se but to treat only "improper blood flow" in the veins. "So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don't have to talk about MS or the link to MS," said Sinan.'

Interesting.

[elaine]

Hello everyone
just thought i would give you all a quick update, I was feeling quite sore for the first few days.I even felt like my legs were a bit weak, but today i am starting to feel much better.I had a hot shower just to see how i go, which normally i would have to sit down after it for about an hour, but i showered got dressed, even done the dishes and was still standing.I went for a walk about two blocks this afternoon in the sun, i started to shuffel a bit on the way back but the heat did not bother me at all.I suffer from headaches almost everyday last headache i had was on Tuesday after the procedure.
Well that's all for now, I feel really blessed to have had proff T preform the procedure on me and shame to all that want to close him down.I am sure he won't be going without a fight, hopefully my results and all the others will help fight to keep Proff T help so many others.
Cheers Elaine

[CureOrBust]

...Cure... if we can get him in to see Prof Thomson

Phil, thanks for the plug, but I already have an appointment booked in to see him early next month; ie initial consult. Hopefully this means he will also be willing to book treatment, if he deems necessary.

I had a consultation with Prof Thomson on 8 April and he definitely told me that he is not taking any further bookings for balloon angioplasty until he has completed and evaluated the 25 he currently already has booked in. He indicated this would be June.

I am hoping I am in that group of 25.

I speak to Prof Bester at St Vincents in Sydney as he is still taking bookings as far as he knows and I would be more likely to get seen to before June.

has anyone who Dr Bester has treated, been on this website yet?

PS: Dignan can claim first honours, as is the case for most new research. I truly think it is an understatement to say this website is what it is because of him; at least for me.

[Brainteaser]

FYI, I'm told there is something coming up re CCSVI on the Channel 7 Sunday Night program, 6.30PM EST. I can't see it on tonight but it could be. Or it could be down the track or even on something like 60 Minutes. This is good in one sense in terms of spreading the CCSVI word, but obviously bad if it draws oppostion from the strongest trade uni0n in Australia - the AMA.

Phil