Cece's turn

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

Postby Rokkit » Fri Mar 04, 2011 9:27 am

Cece wrote:It is a shame that he didn't respond to you, Rokkit.

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.
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Postby Cece » Fri Mar 04, 2011 9:52 am

Rokkit wrote:
Cece wrote:It is a shame that he didn't respond to you, Rokkit.

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?
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Postby DrCumming » Fri Mar 04, 2011 10:51 am

Nunzio wrote:
vivavie wrote:Maybe I missed it but did you see a difference in you skin texture ie, clear and smooth?

After my 1st procedure I saw a major difference and also in my facial apperence. After my 2nd procedure when my jug collapse my skin was terrible, in the morning it was as if I slept in butter and I had major break out (forehead, torso, neck and shoulder). Naturally the drs said there were no correlation :?

Well they were both wrong (partially) Maybe you should inform them that the anterior facial vein is a direct branch of the internal Jugular vein. The external jugular vein provide drainage from your scalp. The reason I said partially is that it depend were the restriction is. Since the anterior facial vein insert in the middle of the Internal Jugular vein any blockage above , close to the insertion in the sinus would not affect it, but the most common problem is below close to the innominate vein and that would definitely affect your facial vein flow.
In my case I have Seborrheic dermatatis which I think is due to accumulation of toxins on the skin secondary to poor flow with the immune system trying to clean up the mess.
I can tell you I had a dilated periorbital vein that almost disappeared after the procedure.


Dr Ma'moon Hasan Al-Omari showed several pictures of this in Glasgow this fall.
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Postby Rokkit » Fri Mar 04, 2011 12:09 pm

Cece wrote: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?

Yeah it'd be nice if they'd all start blogs and update them once a week. :D
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Postby Cece » Fri Mar 04, 2011 12:15 pm

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

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

Now we are talking. :D
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Postby CCSVIhusband » Fri Mar 04, 2011 12:58 pm

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.
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Postby Drury » Fri Mar 04, 2011 8:21 pm

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.

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Postby Cece » Sat Mar 05, 2011 11:01 am

CCSVIhusband wrote: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.

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.
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.

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.
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 :)

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.
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Postby Cece » Sat Mar 05, 2011 11:16 am

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**
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Postby Nunzio » Sat Mar 05, 2011 4:40 pm

Nunzio wrote:
Cece wrote: Nunzio. Looking forward to seeing that iliac vein! Makes me wonder if others have had similar iliacs that did not get noticed or ballooned. Or if yours is as rare as it would seem.

Hi Cece, I found a picture from a previous venogram I had done a month ago, which is shown below.
Image
If you know a way to post pictures from Dr. Sclafani CD, let me know.
In reality this one did not show much flow into the collateral draining into the Hemiazygous vein as it was very obvious in Dr. Sclafani picture and that is why he decided to dilate it.
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.
Image
After the double dilation the bad collateral(red arrow) disappeared
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby Cece » Sat Mar 05, 2011 5:18 pm

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. :)

Page 1-10: Countdown
Page 10: Procedure: www.thisisms.com/ftopic-15421-days0-orderasc-135.html
Page 15: images from the procedure by Dr. Sclafani: www.thisisms.com/ftopicp-153823.html#153823
Page 23: Nunzio's turn: www.thisisms.com/ftopicp-155377.html#155377
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Postby soapdiva884 » Sat Mar 05, 2011 11:42 pm

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
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Nunzio » Sun Mar 06, 2011 12:35 am

Cece wrote: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?

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.
Cece wrote: 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?

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.

Image
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.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby CenterOfGravity » Sun Mar 06, 2011 11:02 am

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!
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Postby Cece » Sun Mar 06, 2011 11:35 am

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