DrSclafani answers some questions

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

Postby Cece » Thu Jun 17, 2010 8:30 pm

girlgeek, it's not a new one, it's from 1990...I posted it on the page before this one... :)
"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
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Cece Posted the NY Times article

Postby QueenMum » Thu Jun 17, 2010 8:31 pm

See Cece's post above.

http://www.nytimes.com/1990/05/02/nyreg ... gewanted=1

He's had a pretty amazing career....[/quote]
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press release

Postby ram47 » Fri Jun 18, 2010 12:55 am

This is the official press release of the dutch research (University Amsterdam) regarding their research on CCSVI:

New theory not confirmed as cause of Multiple Sclerosis
17 juni 2010

MS (Multiple Sclerosis) is unlikely to be caused by obstructions in the neck veins of people with the disease according to research at VU University medical centre. Researchers at the VUmc MS Centre Amsterdam advise against a treatment (by angioplasty) of the veins. In a recently completed study, the VUmc MS Centre Amsterdam found that neck vein abnormalities were as common in people with MS as in healthy people. Moreover, the study found that these variations did not impact the outflow of blood from the brain.


Last year, there was considerable interest among patients with multiple sclerosis (MS) when Zamboni, an Italian vascular surgeon, presented a new theory on the cause of MS, with the prospect of treatment. The accepted theory is that MS is caused by a disruption of the immune system. According to Zamboni however, MS is caused by altered flow in the draining veins of the brain as a result of which the blood has difficulty leaving the brain and even flows the wrong way.

In the VUmc study, twenty MS patients and a control group of twenty people without MS were examined with an imaging technique (MR venography). The study looked at the presence of obstructions in the neck veins and the blood outflow in the brain.

Narrowing in the head and neck veins were found in eight of the 20 healthy participants and in ten of the 20 MS patients. The size and direction of blood flow in the brain was normal for all 40 participants. Therefore, abnormalities in the venous system occurred with roughly the same frequency in MS patients as in healthy participants. Because none of those examined showed any obstruction in blood flow in the brain, the researchers argued that these are normal variations and certainly do not indicate abnormalities that require treatment.

The VUmc research was conducted with relatively few test subjects. It is therefore possible that other techniques will provide additional insight into the structure and function of the vascular system with MS patients. The VUmc MS Centre Amsterdam will continue research with a larger group of MS patients, healthy control participants and patients with other neurological disorders. This research will involve Doppler-echography as well as MR venography.

The follow-up research project will be made possible by the financial support of the Dutch MS Research Foundation.
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Postby miranda » Fri Jun 18, 2010 3:56 am

Dear Dr Sclafani

I need your advice. My son is 40 years old and he was diagnosed with

CIS in September 2009 . He has been asymptomatic. Since I am

extremely worried regarding the progression of MS, if he is CCSVI

positive, should he undergo angioplasty at this stage, or should he

wait for further research . At present he suffers from depression

Thank you

miranda :) PS Holly has his medical records
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Postby JoyIsMyStrength » Fri Jun 18, 2010 7:29 am

My hand is raised for a question. Pick me, pick me! :)

You said on page 128:

...As i watched that first procedure in ferrara, i noted that they did a venogram of the left iliac vein and then catheterized the left ascending lumbar vein and did another venogram. I aske paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side...


And other fascinating stuff. So I looked up May-Thurner syndrome:
http://my.clevelandclinic.org/disorders ... drome.aspx

The above link says:

May-Thurner syndrome (MTS) is caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left extremity. DVT is a blood clot that may partially or completely block blood flow through the vein.

Most people do not know they have MTS, but it is identified when they present with a DVT.
Patients should seek treatment for symptoms, including swelling, pain or tenderness in the leg, feeling of increased warmth in the leg, redness or discoloration of the skin, or enlargement of the veins in the leg.

Even though DVT itself is not life-threatening, the blood clot has the potential to break free and travel through the bloodstream, where it can become lodged in the blood vessels of the lung (known as a pulmonary embolism). This can be a life-threatening condition.


This is why most doctors hate it when patients look up scary stuff on the Internet, right?

I have bilateral symptoms but left has always been significantly worse than right and MRV report states that there is congenitally hypoplastic left jugular with stenosis. They didn't scan the azygos. I have spinal lesions.

So anyway, here are my questions:

1. If a patient has undiagnosed DVT due to May-Thurner, is there a risk that threading a catheter from the right could dislodge the clot?

2. I hope I don't sound dramatic but could May-Thurner be a possible cause for my swollen purple left foot (there is also swelling/edema on the right but the left is often bright reddish-purple). No pain or heat, no bulging veins. My GP dismissed it as "you're just getting old" and I said, "Them's fightin' words!" I think that's just him being lazy but I didn't say so.

Thanks for helping us understand...

Pam
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Postby Cece » Fri Jun 18, 2010 4:43 pm

JoyIsMyStrength wrote:This is why most doctors hate it when patients look up scary stuff on the Internet, right?

They seem to also hate it when we join message boards and fly off to Poland for (minimally invasive percutaneous etc) experimental surgical procedures!
"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
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ROTFLMAO

Postby larmo » Fri Jun 18, 2010 8:23 pm

Cece wrote:
JoyIsMyStrength wrote:This is why most doctors hate it when patients look up scary stuff on the Internet, right?

They seem to also hate it when we join message boards and fly off to Poland for (minimally invasive percutaneous etc) experimental surgical procedures.


ROTFLMAO

They don't have a problem with us taking our US/Canadian/?? dollars and spending them in another country. It's actually much less expensive, even with the plane fare, than the cost of having the procedure done in North America.
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Choice of doctor

Postby SickButHappy » Sat Jun 19, 2010 6:58 am

Dr.Sclafani,
1) Know I've started to read your post. You are SO generous of your time & knowledge. I thank you from all of us :)
2) I know you won't go specific about dortor names, but your agenda being so full, we have no choice but to look at other options. Not so many doctors performs it (America), I've listened testimonials of people that had the procedure done by another Dr.S, but how can we know if that specialist is updated with the "best" available practices? Do you all keep in touch?
+ there is big price difference. Is one of the reason being clinic vs hospital?

many thanks :)
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Re: Choice of doctor

Postby bmk1234 » Sat Jun 19, 2010 7:03 am

SickButHappy wrote:Dr.Sclafani,
1) Know I've started to read your post. You are SO generous of your time & knowledge. I thank you from all of us :)
2) I know you won't go specific about dortor names, but your agenda being so full, we have no choice but to look at other options. Not so many doctors performs it (America), I've listened testimonials of people that had the procedure done by another Dr.S, but how can we know if that specialist is updated with the "best" available practices? Do you all keep in touch?
+ there is big price difference. Is one of the reason being clinic vs hospital?

many thanks :)


The Doctor owns the clinic and can control pricing. The Dr. can not control the pricing at the hospital.
blaine
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Postby SickButHappy » Sat Jun 19, 2010 7:07 am

Dr.S,
If it is not feasible to be scanned, how do you feel about moving directly to venography, without any prior testing?
thanks :)
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Postby SickButHappy » Sat Jun 19, 2010 7:09 am

thanks BMK for the cost question, but I still wonder about the choice of doctor... how can we know that he's using the best available practices?
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Postby Zeureka » Sat Jun 19, 2010 4:06 pm

Dr Sclafani, hope you had a nice time and picked some of the better weather in Italy, quite strange over here this year :)

I would be interested if you heard from Prof. Z. or experienced yourself that some (rarely?) patients had so-called "transient headaches" after procedure.

What could be in your view the explanation for this? There could be many...I made up all kind of theories/speculations in that period...and appreciated a lot also the encouraging comments received from other TIMS friends that would certainly be transient, but wonder whether ever could know the real reasons behind it.

Mine are now fortunately gone...so indeed transient.

But what a long period of non-stop headaches of a kind I never experienced in my life and strangely started 5 days only after procedure and then lasted 10 days!...only second day had a short migraine and then 4 days felt marvellous...and then suddenly this stuff going all around my head in different places each day going down in pain-intensity which in end pain blocked/limited to the left side temple where had indeed the major angioplasty in the jugular - no stent (is this just a coincidence?) and then went away...it's that I was never a headache person before procedure... now I feel very good again. Wanted to wait a bit before I post and ask you...to monitor first how goes on...

Thanks so much for your views!
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Postby Daisy3 » Sun Jun 20, 2010 10:11 am

drsclafani wrote:
Daisy3 wrote:Hi Dr S,

My husband has been-recently-diagnosed with MS. It's also a rare form of MS too,known as RPMS. It seems a lot like PPMS.
Have you any experience with RPMS?
My slight worry is that when we do finally have the investigations done they won't find anything wrong with him.

Dr Zamboni did not mention this type of MS as far as I know..


I have no experience with this classification.
see below


Progressive-relapsing and relapsing-progressive multiple sclerosis: a re-evaluation.
Kremenchutzky M, Cottrell D, Rice G, Hader W, Baskerville J, Koopman W, Ebers GC.

Department of Clinical Neurological Sciences, University of Western Ontario, London, Canada.
Abstract

Classifications of multiple sclerosis subtypes have been largely based on clinical phenomenology. Nevertheless, definitions of relapse, remission and progression have been imprecise. Recently an international consensus group, as part of a reclassification of disease subtypes, recommended dropping the term 'relapsing-progressive' (RP) and retaining the term 'progressive-relapsing' (PR) multiple sclerosis. The term 'RP' multiple sclerosis had been applied when the early course combined both relapses and progression and was believed to identify some patients with a worse than average outcome.


Thank you.

Our neuro classified it as RPMS which is the same as PRMS I think.
Thanks for digging up the info!
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Dr. Sclafani -Wishing you the best on Monday

Postby annhow » Sun Jun 20, 2010 1:34 pm

Dr. S.

Wishing you the best as you meet with the IRB. May you have tremendous favor with the board and satisfactorily answer any and all reservations they could possibly have about CCSVI and granting your IRB status!

I know everybody here will be thinking of you.

AH
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Re: Dr. Sclafani -Wishing you the best on Monday

Postby drsclafani » Sun Jun 20, 2010 9:57 pm

annhow wrote:Dr. S.

Wishing you the best as you meet with the IRB. May you have tremendous favor with the board and satisfactorily answer any and all reservations they could possibly have about CCSVI and granting your IRB status!

I know everybody here will be thinking of you.

AH


I needed a bit of a break, so sorry for not being very available this week.

the stress of sitting on the sideline is getting to me

i am a do-er

let's hope for the best news monday

then i can answer some questions for you
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