This Is MS Multiple Sclerosis Community: Knowledge & Support

One Eye--sorry for confusion, that's an earlier study, not part of Chung's work or the recent connections made in the last 10 years between venous function, valvular insufficiency and TGA (note the word "probably" in this earlier study.) This was before the venous doppler studies linking jugular reflux and TGA...I merely used the quote from the study to show TGA is not benign. Perhaps I'll remove the studies if they confuse the issue...

Jugs--The greater saphenous vein was used in the jugular transplantation, and it is chosen because it is wide and has a valve, to prevent refluxive flow. I don't think Pacific/Synergy now can claim lower restenosis rates that Dr. Zamboni's team, who has now piblished and documented 23% in the jugular veins. And his approach is multi-modal, depending on the malformation (web, hypoplasic, etc.) I don't think our bodies can regrow a valve....but my question is if one that appears "stuck" can be opened with greater flow.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Don't forget that healthy valves are not easily visualized on IVUS, because they are thin. Unhealthy CCSVI valves are thickened, which makes the edges of the valve show up on as fixed white lines. I do not think improving flow elsewhere would change the thickness of the valves, nor get them moving.

I agree completely with this. It wasn't just Bulgaria, it was a widespread usage of larger balloons without the data to support it.
I am interested in Synergy's upcoming research studies, especially the IVUS one.

I think there is definitely need for long term study to see if venoplasty ends up causing the same problems associated with insufficient valves. Conversely, I don't see the need to sound the alarm in the absence of a single reported case of TGA following valve angioplasty.

We should be hearing of multiple cases of TGA since the 'stuck open' state of the valve should be at its worse following valve venoplasty - after all, that's the goal. With typical venous valve insufficiency, the valve deteriorates with age and becomes more and more stuck open. Here, the valve is blasted wide open, which should put patients undergoing venoplasty on par with the very worst of cases of insufficient valves.

There should be an avalanche of TGA cases and yet there are none. Indeed, the very first bowel movement following surgery should trigger a 'roofee' like memory loss. And yet there are no such reports.

Perhaps the sky isn't falling after all.

PwCCSVI may also have protective hypoxic conditioning, which would reduce damage if a stroke or TGA occurs.

I think this is a point worth considering.

Let's run with the idea that improving neck vein drainage lowers venous hypertension and thereby produces a de-hypoxic effect that in turn allows better motor nerve function (through increased plasticity or otherwise). In simple terms, many pwMS experience an almost immediate improvement in their motor function post liberation. It would follow that the improvements should just as rapidly disappear with a valsalva maneuver in folks who have had valvular angioplasty. There should be massive amounts of reflux, worse than before surgery though acute.

I just held my breath and pushed as hard as little ole me could. Yet there is no delirious effect on my motor function, before during or after. Indeed, when I am trying to lift my drop foot against gravity I grunt, strain and grimace the same way one would when trying to lift a 25 lb weight. It seems to help. With my surgically incompetentated RIJV, the back pressure and shorter distance to the brain, I should be filling my head with the old familiar toxic blood and impairing my motor neurological function just like the bad old days. And yet it doesn't.

Here's what we have:

http://articles.ocregister.com/2011-10- ... svi-vein/6

information on subdural hematoma:
http://www.nlm.nih.gov/medlineplus/ency ... 000713.htm

It would seem to be a very rare complication, if the estimates are right and there have been 15,000 procedures done and no other subdural hematomas.

I couldn't find anything about cheer's worries on the CCSVI Alliance website.

Using the search function on the site, zero results were returned for "TGA," "valvuloplasty," and "valvuplasty;" two results for the term "stroke;" three results for the term "Valsalva;" and ten results for "valve."

None of the results that were returned discussed problems associated with the destruction of an IJV valve.

Does anyone from CCSVI Alliance know where on the website cheer's worries can be found and why the information isn't easier to find if it's there at all?

HP--
my concerns on valvuplasty are my own. I write as an individual, CCSVI Alliance has a board and I'm only one member. My current research and writing on the Alliance site is the Endothelial Health program and the Aftercare program, both of which were reviewed and edited by our science writer.

CCSVI Alliance DOES recommend that patients should remain close to home, work with doctors that have clinical trials or IRB registry approval. That you can find on our site---
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Except the IJVVI and resulting reflux should be at its worse right after valvuplasty since making the valve incompetent seems to be the goal. And yet, as mentioned above, not one complication along the lines that you are alarming us about has materialized. You are absolutely right, however, that it is something to consider and discuss but in raising this it really seems as though you have Synergy Health in your crosshairs for some reason. Are you suggesting that they are:

1. Operating on healthy valves?

2. Misrepresenting restenosis rates?

3. Not participating in an IRB study?

4. Have no follow up care or recommendations?

Perhaps you should look into them more thoroughly before warning everyone about them.

Ideally it would be nice to have treatment options close to home. Unfortunately, most of us do not have this option. Myself, I found California pretty easy to travel to and not a sketchy third world country offering sub-standard care at all. On the contrary, I found California to be quite pleasant actually, with nice people, great doctors and wonderful healthcare. And the decision to undergo treatment was my own, after informing myself as best as I could, and weighing the risks, the unknowns, against my individual circumstances. If it didn't work out, it wouldn't even dawn on me (or anyone else I expect) to blame someone trying to draw attention to this medical breakthrough by posting their own personal experiences seeking treatment, for themselves or a loved one.

http://www.jmedicalcasereports.com/content/4/1/225


I am not sure which kama sutra position that is, but it is one to avoid after CCSVI treatment.....

Here it describes a huge reflow to the brain during Valsalva in this man (who was not a CCSVI patient). It would be relatively simple to check a number of patients after CCSVI treatment to see if we have acquired a huge reflow to the brain under Valsalva conditions. The Zamboni protocol is not as easy to apply to post-CCSVI treatment patients in follow-up testing, because there is a degree of this backwash-from-the-heart sort of reflux.

Hi Cece--
I had that case on the first page, along with a few others. I'm still really concerned about the loss of valves as people age.
Just got the final ISNVD program for patients' day, and this will be debated. Should be on the ISNVD site soon.

Debates
(11:30am – 12:00pm) - Moderator: Salvatore Sclafani
“It's all about the valves” PRO – Michael Arata / CON – Bulent Arslan

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Ok, let's ignore that I bumped the thread with information that was already on the thread...

I am not sure that this debate is on the safety of treatment of valves, or is it more a debate on what constitutes CCSVI?
Is CCSVI all valves, all the time, or is it valves, septums, hypoplasias, venous stenosis, etc?
It is all about the valves (an estimated 85% of the time), and it is those other abnormalities too.

*bump*
This past week I've done some engaging with the ideas that Dr. Arata is putting out, as well as learned more about his specific techniques. He is ballooning both jugulars in the area of the valve whether or not any stenosis is seen, as well as the left renal vein in all patients also. A benefit to this would be that no valvular stenosis would be accidentally missed. A concern with this technique is that healthy valves will be unnecessarily damaged or destroyed.

The comparison you made to the 2010 Sinan balloon technique is important but no answers from Mike as usual. The difference in treating methods needs to be said, and public imo!

The most important question unanswered would be did the Sinan patients have similar outcomes to the Arata ones? And why? And the long term prognosis for the Sinan patients is?

Too many unanswered questions that make a HUGE difference to the learning curve for us all, IR's and PwMS!

Edited
I have to say that Mike uses the language of manipulating the ANS and doesn't state that at the same time he removes the valve function-ability. The omission makes quite a difference to the statement, imo.