DrSclafani answers some questions

[Sotiris]

I googled "selective venous angiography" and got this:
http://www.ncbi.nlm.nih.gov/pubmed/8334262
It mentions selective arterial and venous MR angiography being compared with "intraarterial venography" which is the gold standard. It also compares selective arterial MRA vs nonselective arterial MRA. Selective must be MRA terminology. Conclusion is that the selective arterial MR angiography is a powerful noninvasive method.

(Interestingly it separately says that the MR of the venous system is an "accurate" evaluation. Powerful beats accurate, is it saying that MR angiography is a better tool for evaluation of arteries than it is for veins? This was an AVM article, it was looking at cerebral drainage CCSVI-relevant veins.)

Cheer has a list of a gazillion things that negatively impact the venous system! It's all in her endothelial health regimen.

Venography without a qualifier such as MR is a roentgenographic examination of veins. Selective is when it is applied to selected veins. A recent paper about the different methodologies for the diagnosis of CCSVI is the following "Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls."( http://www.fondazionehilarescere.org/pd ... 5-ANGY.pdf)
The Beirut study finds that CCSVI is less common in pwCIS and more common in pwMS. So they argue that this may mean that CCSVI is a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy. I ask if this could also mean that having MS, there may also be another factor for the deterioration of veins (e.g. a virus) or if this could be a property of the malformations (truncular vs. extratruncular). I know there are no clear answers yet, but I would like to know what Dr. Sclafani thinks about it.

[drsclafani]

I have spent the last week reading all of your replies doc, very informative thank you very much for your time.

I was interested in your suggestion to fogdwellers question as I have have sore jugs too, but you took it off-line, is there a suggestion you could put on-line, I would not know if I have restenosed since I had no improvements to begin with even though both jugs and azygos were 80-90% stenosed:

Dr. S. , I am looking for follow-up treatment to angioplasty I recieved September 27, 2010. It was in So. Cal. and that is about 11 hours drive from my home.

I suspect restenosis. Original effects faded after about a week, and I am now experiencing greater leg pain and recovery time after exercise is much longer (3 days instead of 1/2 day.) I still hve sore and stiff neck which may or may not be related. I am interested in following up.

My question: what do you suggest? Doppler? MRV? Venogram? If in order (e.g. MRV and only if it shows a problem, venogram.)?

Is it likely that the stiff neck is related? I had verly sore jugulars after angioplasty; they wer stretched as mluch as they could.

I think surveillance is most practical with Duplex ultrasound with Bmode imaging and Doppler color imaging and hemodynamics.


angioplasty stretches both the vein and the adjacent muscles. This could be cause pain, inflammation of the vein could also cause pain. Stents are likely to cause pain

[drsclafani]

I live in the UK and have had ms for 17 years. I went for CCSVI ultrasound by a zamboni-trained doc in Glasgow over the summer. I had mild stenoses within the 'normal' range that they felt didn't warrant treatment. It took them a while to see this as i have very low BP.
I had an appointment with my neuro last week to compare MRIs from 06 and two weeks ago. He says he's concerned about atrophy but apparently Aricept, tysabri or B12 supplementation wouldn't work.
I've been doing weekly O2 therapy since my 'fruitless' glasgow visit in august.

Are there any approaches i should be exploring to slow down atrophy?

Zamboni technnique does not primarly focus on the B mode abnormalities that would show "mild narrowing". The flow pattern, rather than pressures and flow rates are what dr zamboni reported. I am a little perplexed by your report from zamboni trained experts. Perhaps you misunderstood

[drsclafani]

Dr. Sclafani: I have assembled below your replies concerning your proposed treatment protocol when you are able to resume CCSVI procedures. It seems that you are planning on performing an initial Doppler screening yourself. Post-op, patients who had to fly-in will stay over a few days to be sure there aren't any problems. A prophylactic dose of a relatively safe short acting anticoagulant for three weeks will be prescribed. No stents will be used.

Follow up visits by neurologists to assess conditions. Doppler ultra sound testing performed according to Dr. Zamboni's criteria.

These last two are real stumbling blocks for me, at least. I live near Chicago and I am not aware of any neurologist here who isn't opposed to the CCSVI theory, so I doubt if follow-up observation is a real possibility. The IR who did my first procedure did have a Doppler ultrasound test done on me by his hospital, but they have since slapped an IRB on him in March and it still hasn't been satisfied.

Does this mean someone cannot be treated by you until they already have a local neurologist and ultrasound testing facility lined up for post-op surveillance? Or does this mean that treated patients should plan on flying back for these follow-ups?

Donnchadh

Long distance followup is difficult but not impossible. However in order for my followup to be logical i am having to find locations where Doppler screening can be done. I think i have canada taken care of but the US is more difficult. i have some ideas but cant get started unitil this followup is worked out.

Yes, it is important that a group of ultrasound facilities be accredited by someone to assure that they do a standardized examination that is reliable. Training is very important, otherwise abnormal findings will be missed. There is not much concern for the ultrasound done prior to treatment of ccsvi. In my practice, I would generally want to perform that baseline examination myself, at least unless there were mitigating circumstances. However as we will likely see insufficient centers in each city for a while, it is important that those treating have access to local neurologists and ultrasound labs to do the surveillance testing necessary to stay on top of follow up. The on line survey of symptoms can only go so far. We need more objective signs indicating possible restenosis, etc.

I have spoken with Dr Z about this and we will develop a standard at the first isnvd meeting in bologna in 2011. In the meantime, I will have to assure adquate long distance followup for my own patients.

Some neurologists have "fired" their patient.

many patients do not routinely visit neurologists and have given up on medications. thus i surely need colleagues who will cooperate. Many i have spoken to have demured and walked away.

Other patients DO NOT want to share their treatment with their neurologist. Some dislike or mistrust their neurologists or are dissatisfied with their neurology care and would be interested in referral to an MS specialist who is open minded regarding ccsvi

So therefore I needed some neurology colleagues close to me that I can refer patients to.

The decreases in oxygen saturation are slight The body is highly effective in extracting oxygen.

However, hypoxia is a factor increasing risk of thrombus formation and with intimal damage could lead to thrombosis. I think that studying outcomes of those who travel is an important point to collect. Good job!

I plan to anticoagulate all my patients with a prophylactic dose of a relatively safe short acting anticoagulant for three weeks. Thus those traveling home will have some protection. I was planning to restrict patients from flying for a few days too.

I am not a student of geography but i am not averse to referring patients to labs that are knowledgable perhaps outside of chicago but closer than new york. If one does not exist, I am not going to abandon patients. Which means either you visit me and my colleagues or I train people to evaluate and image my patients. I plan to train someone in the doppler techniques in chicago


BTW, you left out periodic patient self evaluations at one m onth, three months, six months, and every six months thereafter.

[drsclafani]

"Dr Siskin reported 33% with NO improvements. That is very high!!!"

My consultation on 10/12/10 with Dr. Siskin was to be sure I didn't have unrealistic expectations - and there are no guarantees. (repeated that 10 times) I didn't know he reported 33% with no improvements. No wonder he was insisting I understood that. And he is not fixing MS symptoms so I couldn't even mention what my symptoms were.

However, when I changed my focus on possible inverted valves with reflux which was suspect from an earlier local doppler test, he first told me there is nothing that can be done about inverted valves. Further he stated that people in his office were tested with the doppler and they all have reflux but no MS. But then he wanted to do a doppler - and I asked if it was Transcranial doppler, and he said they have that equipment too.

Only after the test did I learn it was a Transcranial doppler because they put the instrument next to my ear on my face, and when he came in, they whispered to each other and then he told me they found "mildly positive" and he suggested a catheter venogram - but it was up to me. What is mildly positive??? So I said, "That would check the azygos too, so sure - let's do it."

Also, he is not following Dr. Zamboni's protocol going in on the left side! He changed that recently because too many people were showing May Thurner syndrome. One person from September;'s procedure in Albany was told to get that fixed locally in Indiana!

But how am I going to get those inverted valves fixed - thinking "vascular surgeon" someplace locally? I heard a doctor overseas say that he would fix the patients abnormal valves as seen on doppler. Is that something any vascular surgeon should be able to do?

Dr. Siskin insists on having more testing to be able to say with statistical evidence that he can fix something. Why can't the doctors just provide evidence what was tried and failed or was a success, and go from there?

Dr. Siskin only has a 67% improvement rate. He should give it two to ten years before stating this poor success rate and maybe start following Dr. Zamboni's protocol. He told me that Dr. Z's 100% of MS patients showing CCSVI to be "unvalidated" and "there is no such thing as 100% of anything."

We'll see in a few weeks.

success or failure may take a bit of time to determine.
I am glad there werent more questions on that post!

[drsclafani]

Further he stated that people in his office were tested with the doppler and they all have reflux but no MS.

That is interesting.

Put together with the research on leukorariasis by Dr. Chung and Dr. Hu, which says that IJV reflux worsens with aging, I wonder if we need to look at younger populations when forming a control group in any study? Take a group of 20-year-old MSers and 20-year-old normals, to reduce the confounding variable of reflux in the older folks? Having reflux at age fifty is not the issue, it's having reflux from birth through age fifty.

Dr. Sclafani, what do you think? If this age-related IJV reflux is affecting control group results, would it affect findings only in doppler ultrasound studies or would it affect MRV studies?

Dr Chung's and Dr. Hu's papers:
1. http://www.ncbi.nlm.nih.gov/pubmed/20172657
2. http://www.ncbi.nlm.nih.gov/pubmed/20800950

cece
never have so many confused so much. we must be careful when investigators speak about reflux. but careful....remember dr doepp analysis with Valsalva manuever
there are two kinds of reflux, reversal of flow because of obstruction, and reversal of flow because the valve is not preventing reflux from the heart

[drsclafani]

Hmmm. I think they used MRVs, when they'd need to use Doppler if they were measuring reflux directly.

I also could be completely off with this!
Beirut study:

Chronic cerebrospinal venous insufficiency is an unlikely cause of multiple sclerosis

B. Yamout, A. Herlopian, Z. Issa, R.H. Habib, A. Fawaz, J. Salameh, H. Wadih, H. Awdeh, N. Muallem, R. Raad, A. Al-Kutoubi (Beirut, LB)


Introduction: A state of chronic cerebrospinal venous insufficiency (CCSVI) secondary to extracranial venous stenosis (EVS) was suggested as a possible cause of multiple sclerosis (MS).
Methods: In this study we performed selective extracranial venous angiography (SV) on 42 patents with early MS (EMS): clinically isolated syndrome (CIS) or relapsing remitting MS (RRMS) of less than 5 years duration, and late MS (LMS): RRMS of more than 10 years duration. We also reviewed available MRI and clinical relapse data in patients with documented EVS.

Results: EVS was present in 7/29 (24%) patients with EMS and 12/13(92%) patients with LMS, a highly significant statistical difference (p<0.0001). Only 3/42 (7%) patients (all in the LMS group) had 2 vessel stenosis, while the rest had only 1 vessel involved. The incidence of EVS in CIS was 9% compared to 33% in RRMS of less than 5 years duration. The most important factor in determining presence of EVS was disease duration: mean=9.4±6.8 years in 19 patients with EVS compared to 3.2±4.1 years in patients without (p<0.005), which stayed significant after controlling for age at disease onset and gender (p<0.002). Within the EMS group, patients with (n=7) and without (n=22) EVS had similar EDSS (1.43±2.13 and 0.8±0.008, p=0.85) and disease duration (mean =2.1 and 2.4 years, p=0.521), suggesting similar disease severity. The 7 EMS patients with stenosis had a total of 14 relapses since disease onset. No clear correlation could be found between site of EVS and relapse anatomical localization. A total of 97 spine and brain MRIs available since disease onset on all 19 patients with stenosis were reviewed. Again no clear correlation could be seen between the location of gadolinium enhancing (Gd+) lesions and site of EVS.

Conclusion: CCSVI is an unlikely cause of MS since it is not present in most cases early in the disease, and in only a minority of MS patients affects more than 1 extracranial vein. It is likely to be a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy.

post from drsclafani with what can be seen on doppler vs MRV:
http://www.thisisms.com/ftopicp-113877.html#113877

on Doppler and ECU, one sees hemodynamic evidence of abnormal flow and anatomical abnormalities of the jugular vein

on MRvenography one sees evidence of collapse of veins, collaterals and some real stenoses

The abstract appears to be speaking about catheter venography but the techniques are unclear as are which findings of ccsvi were detected

[drsclafani]

They found 9% and 33% respectively.

I hadn't read that closely...those are really low numbers.

For anyone actually looking for drsclafani in the drsclafani thread, he has the SIR group meeting tomorrow, we might not see him here for a bit?

http://www.thisisms.com/ftopicp-138500.html#138500

i am home. it was a very stimulating meeting but i cannot speak about details

[drsclafani]

Hi Dr. Sclafani!
First I wish to thank you so very much for all of your care, compassion and hard work. I am so very grateful for real doctors like you who are actually interested in helping make things better.

Please forgive me if you have answered this before. I have MS, and it is mind blowing (at least for me) to read back over 245 pages.

Background information - I have been doppler tested, found to have no known stenosis that could be seen, but I do have reflux or 0.95 seconds and 0.89 seconds in each jugular. ***** Doppler also found to be a Complex cyst measuring a.Gem x 1.0cm in the right lobe of the thyroid. *****

I am to be re-tested at University of Maryland by Dr. Haskal and Dr. Jade Wong's staff this Thursday Oct 21.

I have heard of other MS/CCSVI patients also were found to have cyst's on their thyroid. Just so you know blood tests show my thyroid to be normal. I do not have hyperthyroid or hypothyroid problems.

I understand collateral veins may be re routing things through my thyroid. Can you see this on a doppler?

I've heard these cysts, may be related to CCSVI. Could they be? Has this been found and noted by doctors who are treating CCSVI? Did Zamboni write anything on this?

Thank you SO much for being here and all you do.

Judy

Collateral veins through and adjacent to the thyroid are commonly seen

if CCSVI happened to scan the breasts, lots of cysts would be found. not because of ccsvi but because breasts h ave cysts. Same with the thyroid. many thyroids have cysts.

dr Salvi, Dr. Zamboni's neurologist partner, has suggested that venous insufficiency may lead to an inflammatory reaction in the thyroid as well

but listen, this stuff is complicated. There are lots of suggestsion, much of which needs to be validated by investigations which we have just not had enough time to design, let alone perform

[drsclafani]

apologies for too many posts!!! I try not to do this.

NZer1, I think this is similar to what you're saying. A "comparative intent to treat study." I love the idea.

as i suggested to colleagues, we need a comparaitive intent to treat study. each diagnostic test would be described. each of several investigators would read the evaluation of the test and make a treatment plan based upon that imaging. Then the group would convene to look at all of the imaging and come to consensus of intent to treat. Then compare the results of each test by each proceduralist to the consensus.

This may answer the question as to which test would be relied upon, which woud lead thetreatment that was actually performed and of course assess all plans based upon outcome

our goal should be to find the shortest distance between two points

http://www.thisisms.com/ftopicp-109366.html#109366

cece, did i say that? its brilliant

[drsclafani]

Hmmm. I think they used MRVs, when they'd need to use Doppler if they were measuring reflux directly.

I also could be completely off with this!
Beirut study:

[...]
Methods: In this study we performed selective extracranial venous angiography (SV)[...]

Selective extracranial venous angiography=selective venography= gold standard. However, even with the gold standard, some problems may be missed. Assuming that they performed the SV without missing any problem, could that mean that apart from aging there is also another factor that deteriorates the venous system?

don't read much into an abstract. The devil is in the details

[drsclafani]

Lady Gazelle I was treated by Dr Siskin in September and was told they no longer go in through the left because they WERE NOT seeing enough May Thurners to justify it. I was also told that they were not looking directly at the valves. They don't use IVUS.
Cece - I believe that you have a good point in that studies maybe should not be being done on those of us with old veins. I wonder what you think of that Dr Sclafani?
Another question to Dr Sclafani - I took Green Tea Extract for the first time on Saturday. It obviously opens up the blood vessels and for me too well. My BP went up (I have been having this problem from time to time) and I felt very unwell. Could this be my old veins or the fact I don't have an azygos vein?

i personally do not think we should exclude any patients fromt reatment investigations. Otherwise we will exclude a lot of patients from treatments

let the data tell us whom to exclude from treatment i.


When your blood vessels dilate, you do not generally get increases in blood pressure

i think you are suffering from trying to explain too much. i understand the need to do this, but often it just leads to misbegotten conclusions

[drsclafani]

I googled "selective venous angiography" and got this:
http://www.ncbi.nlm.nih.gov/pubmed/8334262
It mentions selective arterial and venous MR angiography being compared with "intraarterial venography" which is the gold standard. It also compares selective arterial MRA vs nonselective arterial MRA. Selective must be MRA terminology. Conclusion is that the selective arterial MR angiography is a powerful noninvasive method.

(Interestingly it separately says that the MR of the venous system is an "accurate" evaluation. Powerful beats accurate, is it saying that MR angiography is a better tool for evaluation of arteries than it is for veins? This was an AVM article, it was looking at cerebral drainage CCSVI-relevant veins.)

Cheer has a list of a gazillion things that negatively impact the venous system! It's all in her endothelial health regimen.

Venography without a qualifier such as MR is a roentgenographic examination of veins. Selective is when it is applied to selected veins. A recent paper about the different methodologies for the diagnosis of CCSVI is the following "Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls."( http://www.fondazionehilarescere.org/pd ... 5-ANGY.pdf)
The Beirut study finds that CCSVI is less common in pwCIS and more common in pwMS. So they argue that this may mean that CCSVI is a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy. I ask if this could also mean that having MS, there may also be another factor for the deterioration of veins (e.g. a virus) or if this could be a property of the malformations (truncular vs. extratruncular). I know there are no clear answers yet, but I would like to know what Dr. Sclafani thinks about it.

i doubt that ms causes ccsvi. my original thought was that ms caused ccsvi caused by inflammation of the veins. It is not an inflammatory process in the veins. but a malformation. marlforamations occur in the fetus

[Cece]

Thank you for the responses, especially on the two types of reflux.

I'm glad if I reminded you of your own brilliant idea! It's more actionable now too.

[newfie-girl]

Hello all, I have a quick question, if we are taking Plavix or any blood thinner for 3 months, is it unlikely that you will stenose, while on them, or have people stenosed during the 3 month period, while on blood thinners, I am trying to decide wether to go for my follow-up in Barrie, as it has only been 2 months, post-op and i am struggling with this issue.
I guess what I am asking is, wouldn't you have a better picture of blood flow, if you wait for a period of time, after no blood thinners are taken, to check for blood flow and stenosis.

I have to travel a long distance, and really question, wether or not I should wait for at leasr 4-6 months post-op.
Dr. S or anyone who can rspond and shed some info, I would be truly greatful.
Cece, can you remember reading any stats on this ie: stenosis while on blood thinners and what happens once we stop taking them?

Thank you all.........Chris