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NEW paper:CCSVI venoplasty improves cerebral blood flow

Posted: Tue Dec 10, 2013 10:14 am
by cheerleader
From Australia, pilot study published in Plebology--
8 people with MS/CCSVI are doppler scanned before and after venoplasty treatment. All treated patients show a "significant improvement in global arterial cerebral blood flow" after they are treated.
The current findings support the view that the early symptomatic benefits observed after venoplasty for stenoses in the extracranial venous circulation may be the result of increased cerebral perfusion.
http://phl.sagepub.com/content/early/20 ... 3.abstract

Re: NEW paper:CCSVI venoplasty improves cerebral blood flow

Posted: Wed Dec 11, 2013 5:26 am
by Cece
Conclusion The ECDU examination described provides a reliable objective assessment of IJV and VV stenoses and, with the use of BVFs, can quantify the degree of obstruction. These results support the use of ECDU as a non-invasive post-operative assessment of the success of venoplasty. The ability of ECDU to measure GACBF provides an additional parameter to monitor vascular pathophysiology in MS patients. The current findings support the view that the early symptomatic benefits observed after venoplasty for stenoses in the extracranial venous circulation may be the result of increased cerebral perfusion.
Maybe pre- and post-angioplasty measurements of GACBF are a good idea clinically. I wonder too if the GACBF improvements hold up over time, or if this was only measured in the day after the procedure itself. Great research though. The Australian researchers seem objective and impartial and they were able to find an effect. Measurements of GACBF could be incorporated into randomized trial design.

Re: NEW paper:CCSVI venoplasty improves cerebral blood flow

Posted: Wed Dec 11, 2013 5:54 am
by CureOrBust
I have met with Dr Thibault, and I have an email I sent to Warren (the owner of the Vascular One Ultrasound) sending him the Zamboni paper (and a few others) for his first time, back in mid Dec 2009. It was the first he had herd of CCSVI, but was prepared to read the paper to see if he could perform the tests. Back then he was specialising in Cardio vascular scans and was not confident with TCD. I also sent an email telling him of Dr Thibault right near him (its a small town so they probably knew each other already working in related fields) so that could of started their collaboration; at one point he actually worked in Dr Thibaults offices. Its a small world this CCSVI. I tried to get a third Dr (A professor of neurology that was world renown and respected in stroke and cranial ultrasound) at the hospital near them that did my first UC. Its a pity he never came on board, as he was interested enough to do my scans, but only found 1 of the 5 criteria, instead of 2 as Zamboni predicted. However, I later saw in an MRV that there was a narrowing high up in my Jugular which his sonographer did not pick up. If they had found that, things could of been a little different. He is very respected in Neurology (specialising in stroke) and ultrasound. doh!

A few months before I had my last treatment in NY with Dr Sclafani, I had a follow up scan for the previous 2 treatments with them in Newcastle (at Vascular One Ultrasound), and they found no issues that would need to be treated. However, they found further issues to treat in NY.

Re: NEW paper:CCSVI venoplasty improves cerebral blood flow

Posted: Wed Dec 11, 2013 6:01 am
by Cece
CureOrBust wrote:I have met with Dr Thibault, and I have an email I sent to Warren (the owner of the Vascular One Ultrasound) sending him the Zamboni paper (and a few others) for his first time, back in mid Dec 2009. It was the first he had herd of CCSVI, but was prepared to read the paper to see if he could perform the tests. Back then he was specialising in Cardio vascular scans and was not confident with TCD. I also sent an email telling him of Dr Thibault right near him (its a small town so they probably knew each other already working in related fields) so that could of started their collaboration; at one point he actually worked in Dr Thibaults offices. Its a small world this CCSVI.
Ok, that is awesome.
A few months before I had my last treatment in NY with Dr Sclafani, I had a follow up scan with them in Newcastle (at Vascular One Ultrasound), and they found no issues that would need to be treated. However, they found further issues to treat in NY.
In the paper, they mentioned that twice they had patients who appeared on ultrasound to have stenosis in just one jugular but the patients actually had stenoses in both jugulars when the procedure was performed. That sounds similar to what you're describing here, where the noninvasive test found nothing but the invasive test found something.

Re: NEW paper:CCSVI venoplasty improves cerebral blood flow

Posted: Wed Dec 11, 2013 10:42 am
by cheerleader
Great job, Cure---bringing Dr. Thibault on board has been huge.
we are all, quite literally, making this research happen. And you, Jeff, Cece and thousands of others are putting your own health and bodies on the line. It's actually pretty incredible....

Wondering how much time elapsed between your tests in Australia and the re-treatment with Dr. Sclafani? Were the areas treated doppler accessible? Or was it renal/azygous issues? Also wondering how that trip was for you. I know that's a pretty long flight from Sydney to NYC. I'm thinking stress, hydration, air pressure--and how that all effects the veins.
cheer

Re: NEW paper:CCSVI venoplasty improves cerebral blood flow

Posted: Wed Dec 11, 2013 4:28 pm
by CureOrBust
cheerleader wrote:Great job, Cure---bringing Dr. Thibault on board has been huge.
No, unfortunately I cant claim any responsibility for Dr Thibault, just maybe Warren (Sonographer) and possibly their linking up. From memory, someone here on ThisIsMS had a golf connection with Paul.
cheerleader wrote:Wondering how much time elapsed between your tests in Australia and the re-treatment with Dr. Sclafani?
Dont have the dates, so it would all be a guess. And my random guess would be that I was last treated under 12 months before the scan in Melbourne, Aus. Then around 12 months after the scan, I was treated by Dr Sclafani.

Actually, just found the email trail for some of the above. My last treatment in Aus occurred on 2 Jan 2011, and my treatment with DR Sclafani occurred around 28 Aug 2011. The ultrasound at Vascular One (by Warren Lewis) would of occurred somewhere between those two dates. So the gaps would of been shorter at around 6 months. :mrgreen:
cheerleader wrote:Were the areas treated doppler accessible? Or was it renal/azygous issues?
All my treatments, both the two here in Australia and also the one by Dr Scalafani have never found any treatable issues with veins in my torso such as my Azygous or renal vein. Feel free to ask any questions regarding my treatments, because as a non-responder, I think its cases like me that could further any understanding the most. If they could solve why 70+ % of people are not helped by Interferons (not really the case as its an aggregated figure) we would have a damn good treatment option. Even if the side effects suck so much. :twisted:
cheerleader wrote:Also wondering how that trip was for you. I know that's a pretty long flight from Sydney to NYC. I'm thinking stress, hydration, air pressure--and how that all effects the veins.
To be honest, I am not sure it had affected me, however, I did notice that when I saw Dr Sclafrani I would of appeared more disabled in that my walking was worse. However, from memory it basically returned to "normal" when I got back. I find that not moving makes my stiffness worse when I do try to move, so maybe the long flight in "coach" didn't help. I have done a few flights with MS, including two from AUS to UK/Europe and then back with a single stopover for one week. I can't say they scare me in regards to their effects on my MS. I do use Modafinil for Jet-Lag quite successfully.