This Is MS Multiple Sclerosis Community: Knowledge & Support

Well it appears from that post you found that he is as aware of CCSVI as he needs to be. All I wanted was for him to be aware and to act as he saw fit, so it's all good.

See, I want more, I want updates! That was over a year ago. These are guys with expertise, who were looking with IVUS: what did they find? Will there be a publication on it? If Dr. Raju is a close personal friend of Dr. Zamboni's, will he be attending ISNVD this month? Can they contribute to the standardization of CCSVI-related treatment protocols for the iliac or the azygous or other veins (CCSVIhusband has the full list) that route into the azygous? Or did they fail to find CCSVI in MS patients?

Dr Ma'moon Hasan Al-Omari showed several pictures of this in Glasgow this fall.

Yeah it'd be nice if they'd all start blogs and update them once a week.

A link to Al-Omari's presentation is on this page:
http://tinyurl.com/4m7f9m5
Several before & after shots of the periorbital veins!


Now we are talking.

Interesting he can correlate the clinical discourse of CCSVI with the disease of MS - slide 60 ... and that's basically what we've all seen.

The twisting of the azygous he seems to think is worth stenting (slide 53) - which I wonder if that is the opening/closing (phasic) of the azygous.

All of these presentations make sense ... I just wish we were 5 years in the future and had all of this figured out for EVERYONE

I like slides 58 - 61 the most.

Just wanted to let you know that my daughter did not get clearance from her insurance company for treatment Monday. We are naturally upset as you can imagine. What is worse is that she does not have a date set until Aetna clears so not sure where she stands at this point. It is horrible for Dr. Sclafani of course as he is one patient short on Monday. I hate insurance companies!!

She did have an accident last weekend where she tripped and landed really heavily, smashed her face and looked liked she had been in a punch-up with a prize fighter. Luckily she did not fracture her cheekbone but did have a concussion which she could have done without. It was not her week but Sunday is her birthday and we are going to celebrate in spite of everything.

Drury

Was that the one that said supratentorial lesions were associated with bilateral jugular lesions? I had to look up supratentorial.

Unilateral jugular lesions were associated with optic neuritis; severe azygous stenosis with severe disability. He had also treated a patient with ADEM with stenosis in all three veins.

That phasic opening/closing is something new entirely, I believe. I posted some research awhile back about twisting in veins, it was interesting, a vein can twist quite far and be fine and then a little further is when it closes off, it's dramatic...but we don't yet know if there really are twisted azygouses, we've heard about them but haven't seen the images or IVUS images.

It's tough, with CCSVI being so different from one patient to the next. It would seem that fused leaflets at the base of the jugulars is one of the easier presentations; then azygous valves; then annular stenoses; then some of the azygous webs and membranes that are balloonable if you can find them; and the hardest are things like hypoplastic veins or jugular vein partial duplications or that phasic opening/closing azygous. By their rarity, too, it'll take longer for doctors to see enough cases to have an answer, and there aren't easy answers, and from one doctor to the next they disagree even about some of the easier presentations...we have years ahead of us.

I looked at my IVUS images yesterday, with the white badly flapping valve leaflets, and it strikes me how something so small had such a global effect on my health and life.

Drury, I am upset too, it's terrible to be waiting and dependent on the insurance company. Very sorry to hear about her fall and concussion. Tomorrow is a day to celebrate, I agree, and it cannot take forever, the insurance has to finish credentialing, and she will get treated. **hugs**

Now I can show you the picture of my Iliac vein done by Dr. Sclafani with obvious flow into the Ilio-lumbar vein which eventually drains into the Azygous vein.

After the double dilation the bad collateral(red arrow) disappeared

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

Nunzio, excellent images. If I may ask, did both your previous doctors see this duplication but choose not to treat it? Or did the first doctor not see it? In duplications, if one vein pushes on the other, is that going on here? That is a dark big collateral, I am impressed that it went away. Do you think results will be durable?

Dr. Sclafani, do you have any comments on Nunzio's vein?

Nunzio, I've added you to my index in my first post.

CeCe, John and I leave for Brooklyn tomorrow. Monday is the procedure....we were fit in. Unfortunately I believe it may have been due to Drury's daughter not having clearance from reading the threads on here. That makes me sad for her, considering the fall she has taken recently.
But, I wanted to update you on John's status. Monday at 11 am. Cross your fingers that the 2nd time is the charm. We booked at the Super 8 for super cheap, at least for NYC that is. Only a couple miles from China Town. I am so going there to do some shopping. John says I will never walk that far, ha, for shopping I would walk many miles. LOL
Not really looking forward to the drive into the city and the drive out, but we have to sacrifice to get SUPERB care. Once we are in NYC I am ok, it is just the getting there that frustrates me to no end. I don't understand how anyone would or could have a nice car in NYC. Craziness is how I describe the driving there.
I am rambling and apologize for that. I will update on how John is after Monday morning. Take care

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Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

Well Cece, my previous 2 doctor did not see it because they enter on the right side. On my request the second doctor agreed to enter on the left side the second time and saw it but, from his picture, most of the flow was going back to the right Iliac vein, beside my Azygous was "Normal" so he elected not to treat it.

Not really; in this case the right Iliac artery crosses over the left Iliac vein flattening it and pinching it in the center as you can see from the picture below.


Regarding the duration I am not too optimistic because the etiology of May-Thurner is the compression of the left Iliac Vein between your backbone and the right iliac artery which is still present.
Apparently stenting works well in these cases, but I agree in the more conservative approach; we have time for a more invasive treatment later.

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

soapdiva884 good luck with your procedure! Btw, the vast vast majority of New Yorkers don't have cars, and even if they do, they have them to leave town, not to get around in town. One of my best friends lives in the city, they have a very nice Audi that they pay about $400 a month just to park in a garage, and they use it in the summer to go away for weekends or to go shopping in NJ. Otherwise, it's cabs and subways, even for people with money. (cabs add up!!) I'm a New Yorker by birth, and in some ways it is "home" to me.... I can hear the sounds (hurting my ears), I can smell the smells (offending my nose), Oh the memories. How I love visiting NYC now! Good luck with your procedure and your shopping!

Billie, this has to go well!! I am going to be biting my nails tomorrow until I hear.