DrSclafani answers some questions

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

Postby joana123 » Fri Jul 23, 2010 2:01 pm

Thank you for your reply.
I don't know what to do, the doctor did not want to redo the balloon angioplasti: said that it makes no sense, and sent me home. I am desperate, is there any hope for me?
What can be done in my case?

With respect.
A.
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Postby LauraV » Fri Jul 23, 2010 2:11 pm

It's out! A friend just sent me the link for Dr. Sclafani's article in ENDOVASCULAR TODAY.

http://bmctoday.net/evtoday/2010/07/art ... ufficiency

Articles like this in medical journals can only help.
Bravo, Dr. S!
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Postby newlywed4ever » Fri Jul 23, 2010 5:11 pm

I'm sending copies to local IRs - again, many thanks, Dr S!
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Help to Get the word out...

Postby LadyGazelle » Fri Jul 23, 2010 6:09 pm

HERE'S WHAT I DO TO ALERT OTHERS ABOUT CCSVI:

Paste any length link at www.tinyurl.com and it will be converted to a tiny url. And you don't need to type http:// I make 2-sided tiny tags that are printed on both sides (bright green card stock).

I use 1/2" adhesive (bright green) circle stickers to stick these tags up everywhere. (They were even on wheelchairs at the hospital and in the bathroom, too!) :D It's much easier to give the tinyurl with a few numbers/letters to someone over the phone too!

ThisIsMS Forum: tinyurl.com/25ks43k
Endovascular Today: tinyurl.com/2bjnvyr


Here is what I print on the other side of my tags:
MS & CCSVI Forum: PatientsLikeMe.com
Dr. Zamboni Videos: tinyurl.com/y9c2uwy


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Another thank you !

Postby girl69 » Sat Jul 24, 2010 2:10 am

I just had to say it again : Thank you Dr. Sclafani for that great informative article, thank you for everything you have done, are doing and probably (certainly :) ) will still do for us !!!
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Postby CureOrBust » Sat Jul 24, 2010 2:48 am

Theoretical question:

If a patient came to you with a lower leg venous issue, that required a Catheter Venogram (and they have a referral for such from another Dr), if you found out they also were suffering from MS, how "risky" would it be for you to have a "look around" their Azygous and Jugulars etc (NB: in this theoretical experiment, the patients existing venous issue is in their left leg). And would you?
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Postby Hockeydad » Sat Jul 24, 2010 6:19 am

Hi Dr S and everyone, I got my report for my CCSVI test. Out of the Zamboni 5 marker citeria, I have 4. Other than that I don't understand anything that was written. Can anyone put this in english? For the right and left; there is no thrombosis, There is venous insufficency with reflux in the IJV at 0 and 90 deg. The cross sectional area of the IJV at 90 deg is larger than the cross sectional at 0 deg resulting in a negative delta (positive result). B mode abnormality noted. Bidirectional flow noted in the deep cerebral veins.

So Positive for (IJV and Subclavian) for Spontaneous;Phasic;Augmentation;Compressible. I can read blue prints but not this.

Thanks

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Postby Cece » Sat Jul 24, 2010 6:36 am

Hockeydad wrote:Hi Dr S and everyone, I got my report for my CCSVI test. Out of the Zamboni 5 marker citeria, I have 4. Other than that I don't understand anything that was written. Can anyone put this in english? For the right and left; there is no thrombosis, There is venous insufficency with reflux in the IJV at 0 and 90 deg. The cross sectional area of the IJV at 90 deg is larger than the cross sectional at 0 deg resulting in a negative delta (positive result). B mode abnormality noted. Bidirectional flow noted in the deep cerebral veins.

So Positive for (IJV and Subclavian) for Spontaneous;Phasic;Augmentation;Compressible. I can read blue prints but not this.

Sounds like you got it all! Here is what I know: thrombosis means a clot, so you do not have this. Venous insufficiency with reflux in the internal jugular is happening both when you are lying down and when you are sitting up (0 and 90 degrees).The cross sectional area or CSA was recently discussed a few pages back; this means that your IJV is bigger when you're upright than it is when you're lying down; for normal folks it's bigger when you're lying down; this is one of Zamboni's criteria for CCSVI. We discussed B mode abnormality just a few days ago, maybe read back? Bidirectional flow in the deep cerebral veins means that veins within your brain are affected but are not something an IR would touch; they'd leave that for an interventional neuroradiologist or perhaps fixing the IJV will fix the reflux deep within the brain as well. Phasic we have discussed but I have forgotten! Spontaneous, augmentation and compressible...not sure on these either. Congrats, though, you don't have to be an IR to know that report screams CCSVI and it can be fixed. :) :)
"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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Postby Hockeydad » Sat Jul 24, 2010 10:14 am

Thanks Cece. Not sure if I'm happy or scared :oops: I'm on 2 waiting lists now. 1 in Albany and in Arizona. Any opinion on which is "better"? Not sure if there is a "better", but Albany is much closer to get to.
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Postby selkie » Sat Jul 24, 2010 10:32 am

Hockeydad,

I was not able to get a call back yet from Albany, but word-of-mouth & 2nd/3rd hand, I believe they are more experienced.

I did call Arizona and asked them if they use the Zamboni protocols for testing & they didn't know what that was - then they asked somebody and gave me a rather confused answer. I decided they weren't for me.

If Albany's closer, if it were me, I'd go to them - they are also more reasonable I've heard than the west coast which is where I'll probably go if I can get the money because the west is closer to me. But I decided not Az.

good luck!
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To stent, or not to stent, that is the question.

Postby RedfernTO » Sat Jul 24, 2010 12:59 pm

Greetings all! Congrats on the fabulous article Dr S.

To stent, or not to stent, that is the question.

Some friends and I pooled our question lists:
- is there a certain type and location of stenosis that tends to predict the need for a stent?
- need for blood thinners after a stent – how long for? Low-dose aspirin for life?
- Is there an inflammatory process at the site of the stent?
- What happens to a stent as it ages?
- What is the life span of a stent?
- What is the longest a stent has been in place in a jugular vein (non CCSVI use)
- Are there alternatives for stents (e.g. cutting balloons) as a tool to prevent re-stenosis?
- Can you restonose w a stent in place?


I just got the results of my Doppler (done at BVI in Ontario) and I am 5/5. Angela who does the tests at BVI trained in Italy with Zamboni’s team. I’m still flabbergasted.
Last edited by RedfernTO on Sat Jul 24, 2010 2:30 pm, edited 1 time in total.
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Postby Hockeydad » Sat Jul 24, 2010 1:05 pm

Redfern, I was tested by Angela as well. I'm hoping Dr Mac gets his trials going soon, that's ultimately where I'd like to go. Good luck to us all!!
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Double venogrphy?

Postby gauchito » Sat Jul 24, 2010 2:07 pm

Doctor: I am a MSer. A group of doctors in Argentina are developing CCSVI to be available soon in the country. A group of patients (including me) were tested positive by using doppler: Now doctors propose a double venography as next step, that is, the first one for study purposes only and a second intervention some time later (they did not say when) to perform requiered angioplasties. From what I read in our forum this is done all at once in one procedure. Is this double mechanism a typical/valid/legitimate strategy in your view?
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Postby RedfernTO » Sat Jul 24, 2010 2:59 pm

HockeyDad

I heard a rumour there will be a treatment trial in Barrie sometime soon. Who knows if it is true. Since there are hundreds of people ahead of me in line I am not holding my breath...
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Postby Cece » Sat Jul 24, 2010 5:04 pm

joana123 wrote:Thank you for your reply.
I don't know what to do, the doctor did not want to redo the balloon angioplasti: said that it makes no sense, and sent me home. I am desperate, is there any hope for me?
What can be done in my case?

With respect.
A.

He has not been back to answer this but he will be. I am pretty sure the answer is YES there is hope for you. Your doctor did right to not stent there. Dr. Sclafani is saying that it is not where the blockage is. The blockage is lower down. This blockage still needs to be found.

What country are you in? Do you know of any docs with CCSVI experience in your country?

A blockage lower down causes low flow in the vein. This low flow allows the artery to press on the vein. But if the not-yet-found, lower-down blockage is fixed, the vein will be stronger and have better flow. Then the artery will not be a problem for it.

There is lots of hope for your case. Best wishes.
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