DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Case Reports

Postby drsclafani » Mon Jun 28, 2010 6:31 pm

lilsis wrote:What happened to the good ol' Case Report? There are thousands that have been published but I've yet to find one for a treated MS patient. What would happen if every physician who has treated CCSVI submitted one Case Report each? I know it doesn't count for much, but if they were coming from everywhere wouldn't it be something at least to show improvement or overlapping symptoms between MS and impaired cerebral circulation?

Speaking of Case Reports, I read one on dural sinus thrombosis and the surgeon stated the cause of the thrombosis was IJV stenosis, citing that venous stenosis promote turbulence and progressive thrombosis and should be treated with safe and effective balloon angioplasty. It was published in 1996. Symptoms included lethargy, blurred vision, balance and coordination issues, sensory and motor dysfunction, to name a few.

Since my sister has been treated (RIJV only as the azygous was never checked and the left is still a big question mark) she has felt on nine separate occasions a sensation of something slithering across the inside of her forehead, to the temporal bone, behind the ear and down the neck, all the while accompanied by pressure as it moves. Each time she feels it get 'stuck' behind the ear (stenosis was ballooned), the pressure becomes painful, and with diaphragmatic breathing it finally continues its path down her neck and no longer feels it once it passes below the clavicle.

I have heard similar stories from 2 other people, and Denise Manley of the US was found to have a calcified clot in one of her IJVs. Do you agree with the statement (application of Virchow's Triad?) that venous stenosis promote turbulence and progressive thrombosis?

Thank you so much for your time and compassion.


that is an interesting symptom complex. a slithering across the inside of the forehead. What did her neurologist think about that. you seem to be suggesting a clot but i have never heard of such a thing

of course i believe that stenosis leads to turbulence and that can cause thrombus and thrombosis. I have used that argument to advance treatment. It is logical and it is appropriate in my view to treat the stenosis in symptomatic patients. There are many reports of dural sinus and internal jugular vein thrombosis treated by thrombolysis and angioplasty with improvement. However, i do not recall that any that i have read were in patients with MS
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Re: Case Reports

Postby drsclafani » Mon Jun 28, 2010 6:33 pm

lilsis wrote:What happened to the good ol' Case Report? There are thousands that have been published but I've yet to find one for a treated MS patient. What would happen if every physician who has treated CCSVI submitted one Case Report each? I know it doesn't count for much, but if they were coming from everywhere wouldn't it be something at least to show improvement or overlapping symptoms between MS and impaired cerebral circulation?



Thank you so much for your time and compassion.


most journals avoid case reports especially those most reputable and well read journals. They do not need them to fill the space between their covers.

they are certainly not going to persuade neurologist caregivers
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Re: CCSVI in Italy

Postby drsclafani » Mon Jun 28, 2010 6:35 pm

CureOrBust wrote:
drsclafani wrote:plan A...ccsvi stands on its own. what are the symptoms?
headache? fatigue? spasticity? how does one differentiate that from MS? anyone other than MSers get ccsvi? Can't differentiate it? need a trial for ms patients. because it is a vulnerable patient population.
what about people awaiting a diagnosis? I was mis-diagnosed for 10 years, and then when I went to a new neuro, he had a strong suspicion it was MS, but I did not get the diagnosis until after an MRI. Could you grab patients "suspected" of MS and first test them for CCSVI; instead of the MS defining tests such as MRI?


not at my university. the cat being out of the bag, so to speak.
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Postby CCSVIhusband » Mon Jun 28, 2010 6:36 pm

DR. S

Formerly "mshusband" here.

My wife had the procedure done today ... blocked azygous AND May-Thurner.

Thank you for going to Italy ... we wouldn't have even had that looked for a few weeks ago.

Your trip wasn't fruitless for sure!

Just wanted to let you know!
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Postby drsclafani » Mon Jun 28, 2010 6:37 pm

HappyPoet wrote:Hi Dr. Sclafani,

Happy Monday to you! I hope your weekend was full of rest and relaxation.

A question for you: Did you have an opportunity to speak with Dr. Zamboni about malformations of the dural sinuses?

Thank you very much. :)
~HP


thanks, it was a bit of rest.

we spoke only briefly about it. there was no clear consensus expressed.
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Postby drsclafani » Mon Jun 28, 2010 6:40 pm

drbart wrote:
drsclafani wrote:
mshusband wrote:Dr. S ...

If someone had a problem with their leg, couldn't you do a venogram for MayThurner ... and then explore a few other veins?


depends upon what the problem was.
but there is no association between may thurner and ccsvi that i know


Okay I'm confused again. I thought the whole left vs right femoral vein thing was related to this? Different disease, same veins?


i answered the way i did for a reason. That reason was to elicit the confusion you feel.

The reason that zamboni looked for obstructions of the left iliac vein and the left renal vein, was NOT that there was a association between these well known obstructions, but because obstruction of those veins would lead to greater blood flow around the obstructions and that would result in more reflux.

In other words, we are looking for things that might make collateral blood flow greater.

does that help you understand this.
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Postby drsclafani » Mon Jun 28, 2010 6:43 pm

HappyPoet wrote:Good article!

I especially love that our Dr. Sclafani was quoted. ^5, Doctor.

Also, I'm glad I learned about the nonprofit CCSVI advocacy organization Reformed Multiple Sclerosis Society--I love their name! Being in this article will be terrific for them.

Thanks for posting this, CharW--you'll find this post on your other thread, too.

~HP


I spoke to the reporter for at least an hour and explained many concepts. I guess the back alley reference caught her because i was so upset about it. I hope that she learned from other parts of our conversation
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VERTEBRAL VEINS

Postby THEGREEKFROMTHED » Mon Jun 28, 2010 6:45 pm

Dr S
Was there any discussion in Italy regarding vertebral veins and abnormaliteis like a septum running through? Did Zamboni experience this and would there be any relevance with regards to CCSVI? Is there any solution to this? Also did any of his patients have veins that did not "respond" to angioplasty? If so why would they respond the second time assuming that was the case?
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thyroid disease in MS

Postby drsclafani » Mon Jun 28, 2010 6:49 pm

Will all the drama of last week, i forgot to bring up another concept that Paolo and Fabrizio brought up during my visit with them.

CCSVI causes cerebrospinal venous collateral flow. One of the major pathways for collaterals is just upstream to the most common area of obstruction, down low near the point wheree the jugular vein connects with the subclavian vein. Among the many prominent collaterals are veins running through and around the thyroid gland. Is it possible to get "multiple sclerosis" of the thyroid gland because of this excess blood in the area? The answer i got was that it is quite possible.

So can MSers who have low thyroid function chime in here? When did your thyroid problems surface?
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Postby drsclafani » Mon Jun 28, 2010 6:54 pm

CCSVIhusband wrote:DR. S

Formerly "mshusband" here.

My wife had the procedure done today ... blocked azygous AND May-Thurner.

Thank you for going to Italy ... we wouldn't have even had that looked for a few weeks ago.

Your trip wasn't fruitless for sure!

Just wanted to let you know!


that makes me feel somewhat useful. I wish i could do more.

i am happy for you and very glad i visited paolo

he is a great guy and i helped your wife!, albeit as a surrogate
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Postby MaggieMae » Mon Jun 28, 2010 6:59 pm

Dr. Sclafani,

Would it only be low thyroid function? Not Graves Disease?
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Postby newlywed4ever » Mon Jun 28, 2010 7:01 pm

Don't EVER underestimate your "usefulness", Dr S!!! Over & over again on all these CCSVI threads, is "Dr Sclafani says..." :D
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Re: VERTEBRAL VEINS

Postby drsclafani » Mon Jun 28, 2010 7:01 pm

THEGREEKFROMTHED wrote:Dr S
Was there any discussion in Italy regarding vertebral veins and abnormaliteis like a septum running through? Did Zamboni experience this and would there be any relevance with regards to CCSVI? Is there any solution to this? Also did any of his patients have veins that did not "respond" to angioplasty? If so why would they respond the second time assuming that was the case?


hi george, good to hear from you. holly is going to call you soon

There was plenty of discussion of vertebral veins and the problems that are seen in the them. None of us knew quite what to make of them. The Ferrara group has done minimal intervention there with no conclusive assessment.

Why would someone respond the second time?
1 Some of these veins are stiff and one dilatation might not be effective.
2. operator inexperience the first time
3. use of newer technology
4. stenting might be useful in such cases.
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Postby drsclafani » Mon Jun 28, 2010 7:24 pm

MaggieMae wrote:Dr. Sclafani,

Would it only be low thyroid function? Not Graves Disease?


maggiemae, the concept was increased blood flow, loosening of endovascular tight junctions and hemosiderin and iron deposition, and autoimmunity

not quite typical immune thyroiditis, but in that famili of thyroid disease, not graves disease.

i asked dr haake whether he could do an SWI image of the thyroid when he does an MRV to see what he sees
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Hypothyroid

Postby Shayk » Mon Jun 28, 2010 7:31 pm

Dr. Scalfani
So can MSers who have low thyroid function chime in here? When did your thyroid problems surface?

I was hypothyroid 10-15 years before MS diagnosis and interferon (Avonex) made it worse.

Sharon
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