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Hello Dr S,
Since you are in contact with Dr Zamboni do you know what size of balloons he uses? What is his opinion of Dr Sinan ways of treatment? From your previous posts you seemed to agree about the use of big balloons.
Do you also agree to clean the entire azygos even when stenosis are not detected the way Dr Sinan does?
I am very surprised of the low azygos problems found by Dr Simka (19 of over 300 patients). This is also reflected in reports posted by patients after procedure.
In a recent interview in Amsterdam, Dr Z mentionned a pratical session concerning azygos treatment. I really hope this will be spread fast amongst IR.
I am also concerned about the line taken by IR that will not treat a patient a 2nd time if no improvement after the 1st procedure. I heard or read somewhere Dr Petrov and Dr Sinan said that if a patient show no improvement it is because something was missed! Dr Siskin reported 33% with NO improvements. That is very high!!!
What are your thoughts on this?
Posted: Sun Oct 17, 2010 8:36 am
by LauraV
drsclafani wrote:
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.
Dr Sclafani - sad but true. A good neuro is hard to find. I don't see one regularly. I experienced the three scenarios you mentioned. It's too bad. Your doctor should be your advocate - not your adversary. And a good doctor-patient relationship helps with healing, doesn't it?
Good luck with your search. I hope you find him or her soon!
Posted: Sun Oct 17, 2010 9:42 am
by Donnchadh
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
drsclafani wrote: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.
drsclafani wrote: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.
drsclafani wrote: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.
drsclafani wrote: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.
Vivavie comment:
Posted: Sun Oct 17, 2010 10:38 am
by LadyGazelle
"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.
Re: Vivavie comment:
Posted: Sun Oct 17, 2010 11:31 am
by Cece
LadyGazelle wrote: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?
But Cece, didn't the Beirut study find very little CCSVI or reflux in early MS, only later in the disease course which is why they are saying CCSVI doesn't cause MS?
Posted: Sun Oct 17, 2010 2:07 pm
by Cece
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.
drsclafani wrote: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
Posted: Sun Oct 17, 2010 2:35 pm
by L
Cece wrote: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.
drsclafani wrote: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
What percentage of CIS patients go on to develop a more serious form of the illness? All I can find is the figure, repeated in many places, of 30-70% of CIS patients go on to develop RRMS. So this fits with the Beirut figures, no? This fits with CCSVI being present from birth and more severe CCSVI leading to RRMS? They found 9% and 33% respectively. Or is it too late and I'm too tired and I'm not thinking straight?
Posted: Sun Oct 17, 2010 6:12 pm
by Cece
L wrote: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?
I think that the Beirut study should be compared with Zamboni's technique not to be used as a benchmark for anything. If Zamboni were to test patients in the Beirut study and give his opinion would be the only way to compare and also understand the outcomes. Comparing notes is not going to answer the questions in CCSVI when the patients used are not available to 'compare' theories or techniques.
We as PwMS are too different in vascular problems and symptoms to be able to assume a theory is or isn't present unless the same patient group is studied by contenders.
The way the 'group' are trying to disprove is futile when they are not allowing a comparison on the same patients by Zamboni.
You cannot disprove if the same patient is used, call a duel, 10 patients and each 'side' gets to use their technique then the outcome can be tested and answers found about why there are differences and why there are people wanting to challenge the work of Zamboni.
Call a DUEL and set the date.
A little refresher on how it can be tested for by Haacke and Hubband.
CCSVI is likely to have 50 plus subtypes as Dr. Haacke suggests, so what are we needing to be aware of? What are we looking for? Which do we treat and how?
Monitor the outcomes in a professional manor that is recorded and review-able. This seems to be a very sensible way and unfortunately expensive but necessary.
Posted: Sun Oct 17, 2010 7:02 pm
by japentz
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
Posted: Sun Oct 17, 2010 7:05 pm
by Cece
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.
drsclafani wrote: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
Cece wrote: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?
Posted: Mon Oct 18, 2010 8:43 am
by Cece
Sotiris wrote: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?
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.
Comments from Dr Siskin
Posted: Mon Oct 18, 2010 9:52 am
by Hooch
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?
