This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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.

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

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.

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

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

They found 9% and 33% respectively.

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

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:

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?