And then I dreamt:

[1eye]

If you want to lie down and be counted, you can always let the Canadian neurologists follow you (if you are Canadian and you don't mind that sort of thing). No guarantees as to the slant that information might acquire along the way.

Is Dr. Hubbard welcoming information from non-Americans? Those who have had to seek the procedure outside their country?

I fully expect that Ontario or if reelected, the 'Conservatives' will try to coerce the information using tax 'incentives' or some other means. Will they beat it out of us do you think? Contribute even more to the quality of our lives? They have found so many ways to enhance it already, isn't it grand?

[griff]

Welcome to the forum, griff! From what I can tell, there are doctors doing research and doctors simply doing procedures. Dr. Zamboni has said that we should seek treatment within studies or research, which includes any doctor doing registries. Dr. Hubbard comes to mind, as does American Access Care. Dr. Siskin is doing a bit of both, by having a group that is part of a study but also doing straight-up treatments for other patients. He has published on those patients, so that counts, actually. Dr. Arata's group is just doing the procedure afaik. There are many factors we should take into consideration before getting the treatment, one being if our results will add to the body of knowledge, but other factors are price, convenience, if our insurance is accepted, what anticoagulation and techniques the doctors use, experience, etc.

Any patient who wants their data to be collected should remember to send an email to Dr. Hubbard's group requesting the packet for the patient-centric registry! These forms can be brought to whatever doctor does your procedure.

Thanks Cece, and thank you for the info. I would not have any problems with not getting into a research trial; however, I would expect follow-ups just as with the treatment of other illnesses; otherwise it is hard to know if we treated the problem or not. It could be a major issue with those like me who might have other veins like, lumbar, vertebral, iliac, etc. stenosed.

Unfortunately, I live in Europe, so I am not sure how well the US treatment would work out for me in the long run, eventhough I see dr Sclafani to do the most through job. So, Europe or North Africa, Middle East would be closer. I had an operation but then only a stenoses in my right IJV was found and treated with a small 6mm balloon. So, not surprisingly it got restenosed. Now, I am pretty much uncertain what to do. The vascular surgeon whom I am in contact with from the hospital where the operation was done is very conservative and he is against stent (I am very much also), large balloons and torning the annulus. I talked to an IR who knows but not practice CCSVI operations and he told me that he does not know whether the permanently open valves might cause a problem for the heart or not. He thinks that the valve has a role not only to impede reflux but also to slow down the speed of blood flow to the heart. He does not believe in evolution theories and that we do not need valves anymore since we stood on our feet.
Of course, thrombosis, clotting, scarring, intimal hyperplasia are also an issue. I can not see any data on how well certain clinics are doing in these areas. I just heard from this IR that he met patients coming home from Bulgarian and they did not even get a proper medical report, so it is hard to even help them. I feel that doctors who are not involved in CCSVI are also helpful but they just do not get the info from the IRs for the proper follow-ups. They would do it many times. They did it for me twice and not for personal gain or money.
Anticoagulation is also an important issue but it is also something that I can not judge as the IR should talor it to his technique I guess. I know dr Sinan is very proud of his anticoagulant regimen.

[1eye]

Because of the thickening where the valve is attached, there might be a limit there to how wide the vein can be. Other things can happen requiring ballooning or some intervention, like reversals of valves, fusing of openings, webs, etcetera. Almost everyone is different.

I think maybe people that are sick are not as convinced, about the importance of information gathering, as they are about trying to get better.

Many things have stood in the way of even clinical trials in the US, but things are improving. The initial roadblocks may have worked against an organized scientific effort, because when the dam burst, or the balloon popped, or whatever analogy you want to use, things got much more turbulent. Now some less scrupulous and scientific doctors may rush in to fill the void. Most licensed certified US and Canadian doctors (I have no experience elsewhere, but I think there are safeguards), I believe, are compassionate and competent. It is up to the patient to be her or his own best adviser. That is one of the ironies and disadvantages of cognitive problems.

I ain't no doctor. This is not medical advice. My only qualification is that I had CCSVI.

[Cece]

I talked to an IR who knows but not practice CCSVI operations and he told me that he does not know whether the permanently open valves might cause a problem for the heart or not.

Yes, we know that 10-15% of people are born without these jugular valves, which is reassuring, except we don't have any large-scale statistical studies done to see if being born without a jugular valve puts them at greater risk for heart issues or neurological issues. It does increase the risk of transient global amnesia. For me I am taking my chances with that, since the CCSVI blockages themselves seemed to be the greater immediate known problem, not a potential problem that 10 - 15% of the population is subjected to anyway (those born without these jugular valves). But we all have to weigh the risks for ourselves and the risks aren't known yet. Being a pioneer, which is what we still are for another year or two or three, is not the safest of choices. But depending on one's MS, doing nothing isn't the safest either.

I am surprised that you'd be ballooned just to 6 mm in a jugular. Do you know, was it a very small jugular? That's a more complicated issue than the usual valve obstructions. More concern has been raised lately about the large balloons. Maybe there will be a live-and-learn moment with tearing the annulus too.

I am with you in saying that Dr. Sclafani is the best particularly through his use of ivus, examination of the iliac and ascending lumbar veins, thoroughness with the azygous, and general expertise at seeing what is going on with our great oddities and varieties of CCSVI presentations. Dr. McGuckin also was recently shown on a patient's youtube video going over what he did for her, he too checks out some of the other or lesser veins, for example, and possibly the iliac, in addition to the usual jugulars and azygous.

[MS_HOPE]

1eye, I don't know if Hubbard Foundation will mail the survey out of the country; why don't you email them and ask?

I am with you in saying that Dr. Sclafani is the best particularly through his use of ivus, examination of the iliac and ascending lumbar veins, thoroughness with the azygous, and general expertise at seeing what is going on with our great oddities and varieties of CCSVI presentations. Dr. McGuckin also was recently shown on a patient's youtube video going over what he did for her, he too checks out some of the other or lesser veins, for example, and possibly the iliac, in addition to the usual jugulars and azygous.

Cece, my report from Dr. McGuckin shows: EXAM: SVC gram, IVC gram, Pelvic venogram, Ascending Lumbar venogram, Bilateral Internal Jugular and Renal venography, Bilateral Internal Jugular, Azygous, and Left Common Iliac vein. Multi-level angioplasty.

I assume SVC is Superior Vena Cava, and IVC is Inferior Vena Cava.

He found and treated five stenoses, all but one @ 80% (Left IJ, Azygous, Left Common Iliac, and Left Renal), one @ 50% (Right IJ). Flow was restored - I saw this on the images. (But no perceptible benefits almost four weeks later.)

I do wonder about the veins that drain the brain when we're upright (vertebrals?), which are not imaged or treated at this point by anyone, to my knowledge. If they're also problematic (and I suspect mine are), could this explain the lack of symptom improvements?

[Cece]

Vertebral veins are looked at during the full protocol ultrasound but as I understand it they are too small to be treated. Still the ascending lumbar is too small to be treated but is still imaged so that the patient knows about any problems there. Last spring one of Dr. Sclafani's patients was found to have an issue with the verts but no treatment was done. It's a good question.

Everything you list that's beyond the azygous and jugulars is not guaranteed to be checked by other doctors. It's interesting that he is finding issues in the renal vein, in you and another patient recently. Does the renal vein reroute to the azygous?

I am sorry to hear that still no improvements. My first guess is always to check the flow with a follow-up ultrasound. Not always easy or close-by. Then to wonder if anything was missed, like you say, maybe an issue with the verts. Then to wait and see if a slow gradual recovery might yet happen. 80% blockages are severe! You would expect some changes after that is cleared.

[Liberation]

......

[Cece]

What a great response, Liberation, thank you.

Yes, we know that 10-15% of people are born without these jugular valves, which is reassuring, except we don't have any large-scale statistical studies done to see if being born without a jugular valve puts them at greater risk for heart issues or neurological issues.

Yes, that is true. We do not know what kind of health probblems this population have. My IR whom I went for follow-up for doppler also mentioned that he would consider the impact of speedier blood flow towards the heart. Valves should somehow regulate this flow. It might be a good question for dr Sclafani

He's addressed the lack of jugular valve before, I don't think he's addressed specifically how the valve would regulate the flow back to the heart. I don't think blood moves that speedily through these veins? They are low-pressure. That's my guess, anyway, someone ask the doctor.

What are the characteristics of transient global amnesia?

Classic soap-opera amnesia, from what I understand. Forgetting everything about who you are. But it's transient, you recover. Just in the last few years, it's been shown that, while very few people with missing jugular valves get TGA, most people who get TGA have missing jugular valves. Fascinating papers on this from a doctor in China or Taiwan.

They did my right IJV with also 6mm ballon. Also restenosed; however, they told me beforehand that they have to do it couple times to remain that way.

That's another strategy, to do repeated procedures with small balloons. I am not sure if it works or not. Maybe it works on fused leaflets but not on annular stenoses....

This IR (who is not doing CCSVI operations because of regulatory issues) also told me that he thinks dr Sclafani's ivus is an excellent idea. He told me that the cost of such device should be around $1000, so he thinks it would be well worth using it everywhere.

The machine costs around $100,000, it's a big investment. Each individual ivus unit costs around $650 and has to be discarded after a one-time use. The use of it adds time onto the procedure. Even so IMO it is well worth using everywhere. Hospitals are more likely than clinics to have an IVUS. Both of our TIMS doctors, Dr. Sclafani and Dr. Cumming, have used them, although Dr. Sclafani uses them on every patient and I am not sure if that is true for Dr. Cumming, I only know for sure that he's used an ivus because of images he's posted in the now-latent doctors' thread. Are there any other doctors who regularly use ivus?

[1eye]

I think mainly jugular valves have the benefit that they prevent massive reflux when the head is inverted. I think narrowing at valves can be detrimental. Valves can have other problems which are pathological - they can be not working for various reasons, possibly causing stenosis by being too narrow. I would leave it up to the interventionalist who can see what the valves and the blood are doing. They have the expertise and tools, not me.

[1eye]

from: The chronic cerebrospinal venous insufficiency syndrome,
Angiographic findings and Doppler correlation

Authors & Affiliation: Dr Ma’moon Al-omari, Department of Radiology, Jordan
University of science and Technology

Results:

Angiographic evidence of abnormal venous haemodynamics was very
common in MS patients. Significant venous stenosis in at least one of the three veins was seen in 93% of cases: The most common angiographic finding was the stagnation of contrast and delayed emptying at the level of the valve. Signs of abnormal venous Haemodynamics in the IJV were (Rt IJV , Lt IJV) : (1) Reflux at the level of the valve: 57 , 64% (2)Reflux propagated into the cranium 29,41% (3) Stagnation of the contrast with poor drainage: 71 , 77% (4)Stenotic valve due to:-Annulus: 70 , 53% -Septum: 13 , 7% -Membrane like valve :5 , 4%, Intraluminal Flap: 1, 2% , Twisting: 0 , 0.5%. Sings of abnormal venous haemodynamics in the AV were: (1) Obvious stenosis: 39%: Upper Stenosis 21%, lower stenosis 13%, -Multiple stenosis 5% (2) Intraspinal reflux: 35% (3) Reflux into left renal vein: 30% (4)-Delayed emptying at the valve: 46% (5) Significant collaterals: 28%

Discussion: CCSVI is usually diagnosed based on the known Doppler ultrasound criteria. These criteria with the corresponding angiographic finding in patient with CCSVI syndrome are summarized in table (1) Table (1) Doppler Ultrasound Criteria Corresponding Angiographic finding
1-Reflux in the IJV or AV Regurgitation of contrast in IJV or AV, Fig 1A,B 2-Reflux Propagated upward Reversed flow,contralateral IJV opacification, Fig.2
3-Evidence of IJV.stenosis Frank stenosis, Annulus, Septum, Flap Fig.3
4-No flow in IJV Stagnation of Contrast in IJV Fig 4
5-Negative change in CSA in IJV Can not be assist

...figures omitted

Conclusions: Angiographic signs of abnormal venous haemodynamics are very common in MS patient. These finding are so variable, most of these finding can be correlated with the corresponding well established Doppler ultrasound criteria. However some of these findings are unique and can be only appreciated by the gold standard catheter venography.

These are not doppler studies, but studies of CCSVI with X-ray venogram and radiographic dye. I think the words "cannot be assist" refers to this type of procedure being less appropriate for measuring delta CSA.