Cece's turn

Cece · Post by **Cece** » Wed Mar 02, 2011 11:59 am

This is good news, 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.

I know several people who are getting treated at AAC Brooklyn in the next few weeks. And a few more waiting on insurance credentialing. All people I have come to care about. I have such hopes for everyone.

AMJ · Post by **AMJ** » Wed Mar 02, 2011 1:57 pm

Cece and Nunzio it is so uplifting to read of your improvements. It gives all us waiting for our turn hope and that is something we don't want to lose. Keep the updates coming. I wish you both the very best with continuing improvements every day.

vivavie · Post by **vivavie** » Thu Mar 03, 2011 10:22 am

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

Nunzio · Post by **Nunzio** » Thu Mar 03, 2011 4:05 pm

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.

Cece · Post by **Cece** » Thu Mar 03, 2011 4:11 pm

I agree with Nunzio about the anterior facial vein draining into the IJV. I have not however noticed any improvements in my skin.

I still have more pallor than I'd like but it could be that I live in Minnesota and it's winter.... ;)

Nunzio, that periorbital vein went away again after the second procedure too?

As long as I'm posting, I will also quote my daughter from last night, as she stopped to watch me rough-house with my 3-year-old. "You wouldn't do that." (pause, a couple minutes later) "You have more energy from the Dr. Sclafani thing."

Cece · Post by **Cece** » Thu Mar 03, 2011 4:20 pm

AMJ wrote:Cece and Nunzio it is so uplifting to read of your improvements. It gives all us waiting for our turn hope and that is something we don't want to lose. Keep the updates coming. I wish you both the very best with continuing improvements every day.

Thank you, AMJ. I hope your turn comes quickly.

Nunzio · Post by **Nunzio** » Thu Mar 03, 2011 4:42 pm

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.

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.

Cece · Post by **Cece** » Thu Mar 03, 2011 4:59 pm

Such weird veins we have!! The image helps, thank you.

Since May Thurner got on the radar, with many doctors imaging the iliac, I think we'd have heard about iliac duplication by now if it were anything but a rarity.

What about doing a screen capture (hitting "PrintScr") and pasting it into Paint? It might not be elegant but it might work. I was spoiled, Dr. Sclafani put my images up for me.

prairiegirl · Post by **prairiegirl** » Thu Mar 03, 2011 6:32 pm

Cece wrote: I will also quote my daughter from last night, as she stopped to watch me rough-house with my 3-year-old. "You wouldn't do that." (pause, a couple minutes later) "You have more energy from the Dr. Sclafani thing."

Love it!

MrSuccess · Post by **MrSuccess** » Thu Mar 03, 2011 7:34 pm

jab jab jab

Mr. Success ..... smiling like a butcher's dog

drsclafani · Post by **drsclafani** » Fri Mar 04, 2011 3:44 am

Cece wrote:Such weird veins we have!! The image helps, thank you.

Since May Thurner got on the radar, with many doctors imaging the iliac, I think we'd have heard about iliac duplication by now if it were anything but a rarity.

What about doing a screen capture (hitting "PrintScr") and pasting it into Paint? It might not be elegant but it might work. I was spoiled, Dr. Sclafani put my images up for me.

cece and nunzio

if you want an elegant utility that does screen capture, check out Snagit. you can get a trial version for free and if you like it, it costs less than $50 for a full version. it quickly enables screen capture of videos, web pages, images, portions of images, allows annotation, etc.

i cannot live without it

Nunzio · Post by **Nunzio** » Fri Mar 04, 2011 7:05 am

Cece wrote:This is good news, 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.

Yes Cece, I am sure that those IR that enter on the right side only will miss 100% of classical May-Thurner syndrome.
I have a good article below that advocates different degree views and the use of IVUS to visualize properly the problem.
We still do not know the significance of this problem but the possibility of overloading an already compromized Azygous just make sense; time will tell.

http://www.phlebolymphology.org/2009/07 ... s-disease/

Rokkit · Post by **Rokkit** » Fri Mar 04, 2011 7:20 am

Hey Nunzio, I emailed the author of that paper back in August. Sadly, I received no response. I don't expect everyone to make us a priority just because we have a problem, but some kind of response would have been nice. You know, just pointing me in another direction or something. Frustrating. Here's what I said:

Dr. Raju:

Today I read your paper "Iliac vein outflow obstruction in ‘primary’
chronic venous disease."

I'm not a doctor, but the subject matter of your paper is extremely
interesting with respect to Chronic Cerebrospinal Venous Insufficiency
(CCSVI). I imagine you are familiar with CCSVI by now, but if not:
CCSVI is a syndrome, recently described by Dr. Paolo Zamboni, where
the main outflow veins of the brain and spine are impaired, resulting
in reflux which may be significantly associated with the lesions and
symptoms seen in MS. (See http://www.ccsvi.org for more info.)

Most of the focus right now is on the internal jugulars and azygous
veins because nearly every MS patient seems to have issues there.
However, it has been noted that in PPMS patients there is frequent
involvement of the lumbar and iliac veins. Recently, anecdotal
information is coming to light that suggests May-Thurner may be found
more often in MS patients.

These are very early days for CCSVI with much to be proven. In reading
your paper, it appeared to me that you may be uniquely qualified as an
investigator in the lumbar/iliac area. I just wanted to make sure you
were aware of this new area of research. I hope you are inclined to
pursue it.

I am a patient of Dr. Dake's at Stanford. I have 3 stents in my
jugular veins. My one year follow-up is in October. I have evidence of
lesions in my sacral spine that I doubt are caused by stenosis in my
jugular veins. If I can answer any questions, or help in any way, I
would be happy to do it.

Cece · Post by **Cece** » Fri Mar 04, 2011 7:45 am

Dr. Raju is familiar with CCSVI. In January of 2010, over a year ago, his ultrasound technician posted here that he was sending her MS patients and that it was a very complex and long exam.

Here it is:

pamella wrote:Yes. Dr. Raju is also a personal friend of Dr. Zamboni. As a matter of a fact, Dr. Raju had just returned home from a visit with him when he approached me about the study. I am a registered vascular technologist and the chief vascular technologist where Dr. Raju works and have seventeen years of experience in ultrasound. He along with a neurologist here have been sending patients to me for an ultrasound of the intracranial veins as well as the juglar veins. I follow the procedure that Dr. Zamboni has outlined in his study. As someone else here has already mentioned, a lot of vascular technologist scan the juglar veins on a regular basis for the purpose of ruling out a blood clot. There are not a whole lot of technologist that scan the intracranial arteries let along the intracranial veins. The scanning of the intracranial veins should definitely be done by a registered vascular technologist with lots of experience in transcranial doppler and a heart and desire to help with the validation of what Dr. Zamboni has already seen with the research that he has done. I can tell you that as a vasular technologist that scans venous patients everyday for chronic venous insufficiency of the lower extremities, (which requires the patient to be standing the whole time) it is very taxing physically to scan a patient in an upright position. That is why I say that a technologist must have the heart and desire as well as skill. Essentially, Dr. Zamboni is to CCSVI what Dr. Raju is to CVI. They are both pioneers in their fields and have brought the world of CVI and now CCSVI to us as we know it and are beginning to know it.

www.thisisms.com/ftopicp-88589-.html#88589

Every paper on May Thurner and the iliac seems to lead to Dr. Raju and Dr. Neglen. They would have much to contribute to CCSVI if they see merit in it.

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

Cece · Post by **Cece** » Fri Mar 04, 2011 7:58 am

drsclafani wrote:cece and nunzio

if you want an elegant utility that does screen capture, check out Snagit. you can get a trial version for free and if you like it, it costs less than $50 for a full version. it quickly enables screen capture of videos, web pages, images, portions of images, allows annotation, etc.

i cannot live without it

Elegant is better! I have wondered how you make those red or green squiggly arrows.