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Cece wrote:MS_mama, maybe check the thread index, he does use an anti-clotting regimen but I forget what & how long...whenever he tells a story about "his very first patient," it's memorable...in regards to thrombosis, his very first CCSVI patient had a beautiful initial result and then clotted over and it could not be salvaged.

Yikes. The Dr. Siskin et al group doesn't use anticoagulants, so that's why I was asking.

(off to check thread index....)

Johnson wrote:Although gold is an excellent conductor of electricity (arguably the best conductor metal), it is non-ferrous (non-magnetic), and would not be subject to the heating that ferrous metals would be. I have a very large gold crown, and have had many MRIs with it in my mouth. The only real problem is that it tends to cause a "black hole" on the images.

Of course! How stupid of me!

NoFlow - I think your bridge will be fine.. Sorry!

drsclafani wrote:

Wow... an IRB approval appears extremely complicated, labor / time intensive and potentially costly?

Any best and/or worst case guess how long it may take (assuming you are pressing forward with clinical research)? Any chance of getting an exemption? or even Quality of Life trial? Expedited review?

I am hopefull to restart in June.
I will use the time to try to organize more research projects, mobilize the site, and recruit additional neurologists. IT was the amount of patients who could undergo neurological exams that limited our procedures. I amhoping to end up doing more patients by the end of the year than I planned to do this year only a month ago

it is hard to start a train, but harder to stop it

here is another deja-vu quote...for motivation in Dr.S's absence.

Cece wrote:

drsclafani wrote:

Wow... an IRB approval appears extremely complicated, labor / time intensive and potentially costly?

Any best and/or worst case guess how long it may take (assuming you are pressing forward with clinical research)? Any chance of getting an exemption? or even Quality of Life trial? Expedited review?

I am hopefull to restart in June.
I will use the time to try to organize more research projects, mobilize the site, and recruit additional neurologists. IT was the amount of patients who could undergo neurological exams that limited our procedures. I amhoping to end up doing more patients by the end of the year than I planned to do this year only a month ago

it is hard to start a train, but harder to stop it

here is another deja-vu quote...for motivation in Dr.S's absence.

Reading that quote brought tears to my eyes, Cece. I know that everyone here knows how awesome Dr. Sclafani is but it can never be said enough.

In the past three years, I've learned more about MS than I ever thought I would. I've known people who were diagnosed with it but it didn't really "hit home" until the man I'm in love with was diagnosed with PPMS almost three years ago. I started researching everything, immediately. I couldn't accept that an answer wouldn't be found in our lifetime.

To continue with the train analogy.....it's left the station and is picking up speed more and more.

fogdweller wrote:
If you have known anyone on anti-clotting therapy, you can tell very easily if you skratch yourself and it is very hard to stop the bleeding. I sincerely doubt that a placebo drug would produce this side effect.

What, you think placebo effect suddenly stops because anti-coagulants cause excess bleeding?

Why don't you think placebo effect wouldn't also cause excess bleeding in those on placebo? The people on placebo injections in the Rebif trial I linked to didn't just IMAGINE they were having flu-like side effects among other side effects. They were having REAL physiological effects. What makes you think anti-coagulants would be in a different category and suddenly immune to placebo effect? Anti-coagulants aren't unique just because they have REAL side effects. Rebif has REAL side effects too.

Unfortunately, for many of us the 'light at the end of the tunnel' turns out to be a train coming the other way.

That sums up my experience with trains.

This thread is called "DrSclafani answers some questions". Please limit it to that.
Comparing drugs to the liberation procedure as an identical placebo effect is for a different thread.
IMHO it's like comparing apples to orangutans. They are not in the same league either!

Dr sclafani

Procedures -

I had read some where ( but cant find it now) that Dr Z used balloon cutters on his trial paitents second time around and was said to be of more benefit in clearing blockages.
Its also noted that you use balloon cutters ?

larmo wrote:This thread is called "DrSclafani answers some questions". Please limit it to that.
Comparing drugs to the liberation procedure as an identical placebo effect is for a different thread.
IMHO it's like comparing apples to orangutans. They are not in the same league either!

With all due respect, larmo, fogdweller was bringing up the medication aspect of any trial involving venoplasty since anti-coagulants are often provided to patients following the procedure.

I think that's clearly an important part of the discussion regarding the design of a blinded trial for CCSVI treatment since it's necessarily a part of it.

L - not stupid at all. It is called hypoxia.

I always tell MRI techs about my nugget crown, and I have two others backed with platinum. They always re-assure that it is not a problem, but it is always best to be diligent. Find out your exact alloys and tell the technician. Most dental work is not an issue. I would think that even braces would be safe, but I am not certain.

Beyond heating, a greater danger is the metal being pulled through your brain at high speed when they are scanning the occipital, so be sure to take out that barbell in your tongue or nasal septum! You don't want to "shoot" yourself in the head.

There are some cool videos of scuba tanks, fire extinguishers, hammers and such getting mixed up in MRI machines. Just Google it.

larmo wrote:Unfortunately, for many of us the 'light at the end of the tunnel' turns out to be a train coming the other way.

What, the neuros' autoimmune train? It is stalled and off the tracks. They are shaking their fists as we pass them by.

Dr. Sclafani,
The test results my wife got at BNAC identified a flap in her left IJV. In the doppler image they noted the flap and a valve. I"m not clear what problems this flap might cause.

Is it part of a malformed valve? Have you encountered flaps in your CCSVI treatments and what is their significance?

Thanks for the education you are providing to make us better patients and partners with doctors.

Prairie

drsclafani wrote:To date I have seen the following: In most patients they are mixed

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

So variation is the rule.

prairie, maybe a flap is #8 (an incomplete valve leaflet)? Or #14, yet to be added....

AlmostClever wrote:Dr. Sclafani,

Please comment on my MRV pics below.

I think I see a blocked external jug and vertebral veins (maybe anterior jglars?) with severe collateral activity. And if that's the case, have you discovered a way to treat the vertebral veins yet? Do you think that they also can cause CCSVI?

What do you think?

Best wishes,

A/C

i wanted a night off, but someone sent me a private message and i was searching for his/her reference. I have been doing this almost every night for almost 2 1/2 months. A labor of love, but i needed some time away.....but how can i ignore some of the questions

so to this one, i would say, sorry mate, your MRV sucks, and the images dont show the area where defects are likely to be located.

not to worry, since the MR cant show your aygous at all anyway, you might as well start looking to book the big enchalada and get yourself a venogram. Nothing else would satisfy me.

prairie wrote:Dr. Sclafani,
The test results my wife got at BNAC identified a flap in her left IJV. In the doppler image they noted the flap and a valve. I"m not clear what problems this flap might cause.

Is it part of a malformed valve? Have you encountered flaps in your CCSVI treatments and what is their significance?

Thanks for the education you are providing to make us better patients and partners with doctors.

Prairie

prairie wrote:Dr. Sclafani,
my wife (Ozarkcanoer) last week had doppler and MR exam at BNAC. Their report to us was that she has a 7.7 mm long stenosis in her right IJV resulting in nearly absent flow and there was a negative delta CSA in the right IJV, also that they saw a flap in her left IJV. So they detected two of five ECD-TCCS criteria. You can see three images I've posted in TIMS at http://www.thisisms.com/ftopic-11810-30.html .

The iron analysis showed her with higher iron present for her age (64) than the other MS patients and healthy controls they have tested.

I'm unclear what pathology the flap indicates in her left IJV, and why there would be no reflux detected with the stenosis present in the right IJV. Would you comment?

We are going to see a St. Louis MO, Barnes Hospital/Washington U. Medical School professor and neuroradiologist next week to consult on these results; not confident he'll be willing to do venography and treatment but it's our next step.

thank you for all the education and interaction you take the time to do on this forum.

regards,

The list of findings that i wrote on this site was my attempt to standardize nomenclature of the pathological entities that we see. Unfortunately i lost traction by being put on the shelf, but i will continue to describe these findings and hope that all investigators and practicioners can agree at some time to standardization.

in the meantime i have to guess what they meant by a flap.

a flap may represent a thin linear filling defect. if it were parallel to the wall, i would call it a septum, if it were perpedicular to the wall, i would call it a web. It appears that both cause outflow resistance.

i imagine that a web is really a valve leaflet that may be like the lid of a trashcan. depending upon circumstances it might cause terrible flow limitation, but a catheter can push it out of the way and lead to a missed diagnosis. I have found one that was really thin, almost imperceptible and seen on only one of four views. The other was really thick and shocking in its appearance. The part that was attached to the wall was like a pinky jutting into the lumen of the blood vessel. Angioplasty may or may not work. I just do not have sufficient long term experience to know yet.

I imagine a septum as a double barrel blood vessel. the ones that i have seen are right at the confluens with the subclavian vein. They were really difficult to recognize on venography because they are superimposed on each other and tend to blur into each other. Before I recognized this on the IVUS, i saw it on the venogram, but didnt realize what a problem it was. It is most easily recognized by IVUS. In the cases i have seen one of the two barrels was always blind ending and cause compression of the true vein. I have fount three. one clotted off the good vein on angioplasty (my first case). the other two were treated and I await followup. The third i picked up only on IVUS.

After posting this, i found your wife's MRvenogram. it showed what i would call a septum, dividing the vein in two. However i would call this an inomplete duplication of the jugular vein.

in fact is suspect that those images have a duplication on each side