This Is MS Multiple Sclerosis Community: Knowledge & Support

thanks

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dr. Super Sclafani---whose specialties include: Interventional Radiology, Honorary Member of NYPD, Ability to help patients maintain a sense of humor and learn about IR while waiting for better times to come (and I'm sure I've missed something):

I got so involved in listing all of your super abilities that I totally forgot my question---hate this cog fog. When I remember my question I'll post again!

Patrice

Dr Sclafani,
Forgive me if you've answered this before, but when the IRB approves your proposal, will you be able to provide compassionate treatment to those with SPMS for instance? or your prior patients treated that need followup care? Or will it be strictly screenings, like Buffalo?
thanks

Dear Dr Sclafani!

I was diagnosed RRMS in november 2007, at the age of 51.
In march 2009, I had a second relapse. All my lesions are in the spinal cord. I am suffering from sensitive problems, weekness in the legs, tinitus and pain.

I recently had a doppler done in France, that showed no blood flow on the left side of the neck and a stenosis in the right jugular vein.
Than I had an MRV done.
The interventional radiologist explained it to me, telling me that I had no left jugular vein at all, and that the stenosis in the right jugular vein could be ballooned while doing a venogram.
I had that venogram some days ago.
No left jugular vein could be found, and no stenosis, no reflux on the right jugular vein either. The azygots and all the other veins were O.K. Unfortunately, nothing could be done for me.
The doctor told me that I was born without a left jugular vein, but she could not tell me if there was a relation between that abnormality and my MS. I am really very disappointed.

Did you hear about such a condition allready?

Is there any advice that you could give to me?

Thank you for your answer!



Indiana

It is interesting that such a situation has been described several times here on tims, but it hasnt YET been reported among those who perform this procedure frequently. Therein lies the rub. This is a reason we need IRB controls that require publications of data.

on my first procedure, i indeed made that same diagnosis, thinking that the right jugular was occluded half way up the neck. I even tried to get a wire to go up through a narrowed area so i could re-establish the vein. Fortunately, i eventually realized that what i thought was a diseased internal jugular was actually a vertebral vein.

in another case of occluded IJV mentioned on tims, i asked the poster to send me a copy of the image. Turns out that the vascular surgeon catheterized the vertebral vein and misinterpreted the vein for the jugular vein. I would be curious to know whether your doctor was a vascular surgeon or a interventional radiologist.

Then I have had cases where I knew there was a jugular vein from the MRv but it was extremely difficult to get the catheter into it. It took more than 30 minutes to successfully get the catheter into it.

Finally, i had a case where the guidewire sailed up into the jugular vein with no problem and venogram showed a stenosis. I then did IVUS and recognized on IVUS an incomplete duplicated IJV behind the main one that was compressing the main IJV. For better or worse, in an attempt to understand that anatomy better, i took the catheter out of the IJV so i could catheterize the duplication. I was so proud that i had realized the diagnosis so quickly and had shown the residents the entity, which i believe i discovered. Unfortunately when i tried to go back up the IJV to treat, i could not. I spent thirty minutes trying to back up the vein that the wire had previously and without difficulty entered.

my point is that i speculate whether these absent IJV exist, or whether less experienced or less compulsive operators will miss them.

So whats my advice.? Either get another opinion or get another venogram

Here is what my draft of the IRB says so far:

INDICATIONS for patient inclusion in this trial include one or more of the following:
1. A diagnosis of MS based upon the revised McDonald criteria
2. Expanded Disability Disease Scale Score (EDSS) ranging from 0-8
3. Signs of abnormalities suggesting CCSVI on imaging of the neck by ultrasound and duplex imaging, by MR venography, by CT venography or catheter venography
4. CT or MR findings suggestive of dural sinus thrombosis
5. Patients who develop acute congestive plethora of the head and face and have risk factors for jugular vein stenosis or occlusion, such as, prior instrumentation or catheterization of multiple IJV, mediastinal tumor, or cervical adenopathy
EXCLUSION CRITERIA:
1. Children under age 18 and adults greater than 65 years
2. EDSS 8.5-10
3. Prior serious or life-threatening contrast reaction, such as anaphylactic shock, laryngeal edema, severe bronchospasm or cardiac arrest. Minor and moderate reactions are not absolute contraindications.
4. Renal failure with eGFR<60
5. Pregnancy
6. Presence of inferior vena cava filter
7. Presence of pacemaker wire or indwelling catheter
8. Uncorrected or uncorrectable coagulopathy
9. Unwillingness to undergo endovascular treatment


So the short of it is, i will be treating for these indications, plus i will of course continue care of my existing patients,

i am not doing my study to determine whether there is an association of ccsvi in patients with MS. I am comfortable with that determination already.

First I would be an interventional radiologist, because that would give me the most experience to prepare me for this work.

then i would read everything i could about this entity because the technical side is not the most difficult. it is getting into a zen with the disease. understanding what problems the veins could have

then i would determine for myself whether this made sense and whether i would be good at this and would be doing good for the patient because PRIMUM NON NOCERE......or first do no harm

then i would find a neurology partner because someone has to prove the diagnosis, and treat the patient's MS

then i would read some more, this time about MS, maybe join TIMS to learn from patients how to deal with their concerns and issue because there is a human being on the other side of the catheter

then i would look for a seminar where this is taught, and hear from those with experience because people have already learned a lot

then i would really get to know my first patient very well, to make sure that person was courageous, knowledgeable and a true partner because there are political issues, etc that need support

Then i would get an IRB to avoid getting shut down because getting shut down is NO FUN and causes emotional distress for everyone and because we owe it to humanity to document and report the results and to protect patients

and share with administration because if they do not understand, they will never support this

then i would do my first case because there is a patient on the other side of the catheter

This could be evidence that MRVs are useful before the procedure for the extra information and not altogether unnecessary...a question for the research to answer, I suppose.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Happy Birthday, Cece! And maybe this goes with the association between MS and May birthdays, but I too am surrounded by May babies -- May 3, 14, 18, 19, 23, in the immediate family!

I am not juts getting sentimental in the thread. I have a query. Dr. Sclafani, is it too far out to think about veins/arteries from cadavers? Or is there a way to grow them from your own tissue?

Dr. Sclafani,

The IR that did my liberation procedure has been required by his hospital to submit a proposal to their IRB.

Would you be interested in exchanging notes with him concerning the IRB process and your efforts?

He has requested that I not release his name to the public just yet, so please PM me.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

It has been said that he discovered America...so I'd add Lost-style time-travelling and good telescope skills...

<start placebo rant>

I don't think it would be sad for the rest of the people not subjects of the hypothetical trial you refer to, that they are only playing a waiting game. It is good that they don't have to be in this position.

Placebo has been disproved as a treatment, to the satisfaction of a contributor to the Cochrane Group. a meta-study published every few years, and also to my satisfaction. If it cannot be used as a legitimate treatment for anything (it can't) why should anybody on a trial believe it will work on participants, whether they fall into that randomization group or not? I certainly didn't. That is the real ethical dilemma: how can a scientist think any of the test subjects are fooled for two years (my god, two years of untreated MS? -- that has been countless times enough to kill). On the trial I was on I suspected I was on placebo for 2.5-5 years (I call it 'no treatment', which is what it really is, unless you are running a double-blinded, placebo-controlled, randomized voodoo trial), but like a fool I thought 'well, they could tell, they were measuring me every three months, they would have taken me off the trial, wouldn't they?' Nope.

At least I knew I wasn't taking an untested drug, until they made the trial open-label, and only then, I was. Then a short time later, I had a heart attack. Then they stopped the trial. Coincidence? Oh well, at least I didn't die of MS!

Placebo is NO TREATMENT. Call it what it is! (oh, sorry, that's what you *did* call it.) Use something ethical as a control, like current treatments! Then you won't have to run *that* as *another* costly trial, to prove which one is better! Unless they are statistically EXACTLY the SAME, in which case the feeble-minded unfortunate brain-damaged CCSVI victim would have to exercise personal choice, which might be beyond their ability. So the doctor would have to do it for them. And that would be a real tragedy.

Sugar pills are only good for proof (legal) of malingering, to insurance companies, and workman's compensation boards. Leave them there, please. There is no other ethical reason than when the doctor believes, for a medical reason or an educated guess, that there is no problem.

Do you wonder I don't trust these 'MS' neurologists?

<end of placebo rant>

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Dear Dr. Sclafani,
I was talking with a friend IR and I was introducing him to CCSVI. He mentioned he would do the procedure through the brachial vein unless a stent was needed.
Thinking about it seems reasonable and you do not have to go through the heart to reach the jugular vein. I know everybody that does the procedure uses the inguinal vein so could you explain to me the disadvantages of using the vein in the arm as an access point.
Thanks again
Nunzio

i am not doing my study to determine whether there is an association of ccsvi in patients with MS. I am comfortable with that determination already.[/quote]

I hope that you are up and running soon, and that your study will further the understanding of the association of CCSVI and MS for others (even though you are already convinced ). Thanks for your conviction and continuing efforts-- much appreciated!

I think patients are at least being allowed to continue on whatever CRABs there are on when the studies of percutaneous venoplasty are done...at least that is how Zamboni did it...other doctors might do differently. Would a randomized trial require patients to not be on CRABs? Or is the venoplasty considered adjuvant?

edited to say: I forgot what I wanted to say, which is that the problem is that there is no current treatment for CCSVI, as the crabs are only for the immune-related secondary effects...so the group that draws the no-treatment straw would still be getting no ccsvi treatment.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition