This Is MS Multiple Sclerosis Community: Knowledge & Support

Do you/we have to wait until the IRB meets in July for them to respond to your clarifications?

yes, i think that all patients are open for further treatments for a variety of reasons
1. I believe that Dr. Zinn has "gotten" the ccsvi ultrasound protocol now and we can screen better than before.
2. we have a better way of seeing the azygous vein
3. we never really got good views of the lumbar veins
4. i am getting better at this you know


not absolutely but i did learn something about how to view the lumbar veins and paolo and roberto believe that lumbar veins answer some of the questions.

no, not necessarily. they did not make a decision on whether i will have to wait a month yet.

lets see how my comments work on them and hope for the best

the only stupid question is one that one is doesnt ask.

the azygous is in the middle of the chest. it would not be injured by the clavicle. The jugular veins, on the other hand, could be injured by a clavicle fracture, but i would bet more on congenital causes, since a single vein occlusion is unlikely to cause anything

New ways to view the azygous and lumbar... I'm guessing that you're referring about how to view them better during catheter venography, right?

Is there any hope of MRV providing a reasonable view of these veins?

I ask because my MRV of the head/neck from BNAC is normal, and Doppler shows valve issues in both IJVs, deep cerebral vein reflux and also a prominent intrarachidian vein...

I have mostly spinal lesions, so am wondering if the azygous or lumbar veins are involved for me...

So many questions, so little patience!

Thanks!
Pam

All I can say is WOW!!!
Dr. Scalfani we met in Hamilton and had the pleasure of having breakfast with you. We discussed our sons scans and we are happy to say that he was one of the lucky ones to have the procedure done with excellent results.
And as per your last remark regarding symtoms coming back when illness sets in could be a cause of stress. I trully agree.
Thanks for sticking it out and giving all of us a place to find out CORRECT and UPDATED information.
good luck with your adventure and should you need assistance with anything please contact us.

friends from Hamilton......

I was wondering if the immune system stimulation and possibly body temperature changes could trigger a type of psudo attack. I don't believe anyone I have talked with thinks these events have been full MS exaserbations based on our MS history. I can't say I have been particularly stressed, especially since I'm enjoying every minute of my new energy and life, I've just had some colds and stuff. Thanks for researching!
What is surprising? I read your thread with great interest everyday!!!
I have to tell you you made me cry when reading how you want to name your study Wehmeyer. You are very special and we are very lucky!
Rhonda

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Dr Sclafani,

I was diagnosed with MS in January 2008 (suspected MS January 2006 but I was a coward about the lumbar puncture). I have had the MRV and doppler at BNAC. I posted the MRV showing my stenosis in the right IJV at C1-C2 earlier on this thread. The neuro I saw at BNAC and the neuroradiologist I saw at Washington University (professor of medicine) both told me I need to get a second opinion on my MS. I have an appointment for a second opinion on July 7. Now for my question. According to BNAC I have 2 of the 5 Zamboni criteria for CCSVI. But what if I don't have MS ? Do you think CCSVI could be treated anyway in the hope that it will help my symptoms ? The neuroradiologist I saw (a fine doctor and a really kind man) told me my stenosis would need a stent to stay open. But he also said he didn't know if opening my vein would help me or not. I am one confused individual.

ozarkcanoer

Hello Doc S,
I have been half liberated in April (stent for valve problem), they could not enter my Azygos. I asked you before and your answer was to have it check when treatment is available here. But what are the possible reasons? (They tried with 3 different catheter sizes) and how would you do it? (punch a hole?)

I did not have big expectations going to Poland, I figured if I was less tired I could deal with the physical PAIN and all the other symptoms. I had some real non-placedo benefits (regular bowels + saliva) for a month but now its all gone and I am in worse shape than before.

second Q: While looking for a 2nd cancer last autumn my blood test showed high MCV (mean cospuscular volume), could this increase the odds of stent clotting?

third Q: If or When you will use stents what will be your blood thinners protocol?

I am 46, rrms for 10 years, low edss score, lesions lower spine, neck and head
Q 4: I had bone spine fusion (between L/S) at 18. Too far to cause a problem to my Azygos?

tongue cancer (at 30) curietherapy, radiotherapy and cervical curage (right side). I was surprise that they did not see any problem in my right jugular.

I am a very interesting case, are you interested? (I also have dual citizenship!!)

More seriously I thank you and admire you for the interest you have in MS and MSers. My father is a neuro (life's irony), his only comment was: it's your life...

Precision: his only comment on CCSVI and my going to Poland!!
sorry

I was never convinced in my layman's mind that a neg. veno. was the end of the ccsvi road for people, unfortunately some have received as such and left for greener pastures, hopefully they will keep an ear to the railroad tracks every now and again. I also enjoyed your commentary on lesion locations high/low. This might explain why some have had a negative outcome on PTA top>down vs. bottom>up. I had stents put in 3 the length of my LIJV and 1 on the middle portion of the RIJV. Upon further interrogation (10 months post-op), via IVUS, it was discovered that the valve area (RIJV) was more flap than valve. Upon resolving that area and freeing up the obstruction, the upper collaterals diminished further than post-stenting 10 months previous, along with the zeroing out of the pressure gradient up high. Not only that, my venous hum in the right ear was muted (finally!) to a very sane level for me.
Anyways I was reading this thread on my celphone in bed last night and almost came in to turn the computer on when I read your comments...
the low lesions near the entry of the jugular vein into the chest are where most of the real lesions are. Many of the high lesions are physiologic and go away after the lower narrowings are fixed
Quote:


Here here. KUTGW Dr!

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Ok, for anyone else wondering: lumbar veins???

Here is a very simplified diagram that came up when I googled:
http://www.ctsnet.org/residents/ctsn/graphics/svc1.jpg

_________________
"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

When I read zamboni's paper, I noted that he stated that roberto galleoti, the IR who works in ferrara, enters the left femoral vein and advances up into the azygous and the jugulars. I thought that peculiar because it is such a straighter shot up the right femoral into the jugulars and azygous. In my entire career I have entered the right side in more than 98% of procedures. (For your information catheter manipulation is always more accurate in a straight line. when the catheter has to curve, it loses some of the fine tuning.)

The paper never really explained why robbie did that. So 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.

Paolo, why didnt you say so in your paper, I asked. Because the editors cut it out for space reasons!

So now i will do all my catheterization from the left femoral approach, even though I dont like to.

How can evaluating the lumbar veins be helpful? it is helpful in explaining the disease. at the current time, there is no solution to the lumbar vein narrowings (hypoplasia). But it can explain the disease. It appears that lumbar hypoplasia is associated with PPMS.

The mechanismS by which these veins affect the spine as as follows

narrowing of the renal vein and the iliac vein reduce the ways for the blood to exit the spine. in fact they may actually increase that flow. And perhaps that leads to ccsvi of the spine.

So i think that some of those who have had venograms that appear normal just havent had all the right imaging done.

Not to say that all the venograms I have seen done around the worlds would be something leonardo would have been proud of.

That ultrasound is quite specific. The Doppler is quite relevant and the images need to be taken in just the right way, otherwise the diagnosis is unclear.

Erica, the PhD who works with paolo, is phenomenal. She is very experienced at finding the veins and making pictures that are clear, unquestioned and sensible.

She starts with the right side of the neck in the lying down position. She does the doppler of the jugular vein in three areas J1 near the clavicle, J2 near the thyroid, and J 3 above the carotid bifurcation. She looks to see the direction of flow in each area. she images transversly. This shows the carotid and the jgular simultaneously. The color is supposed to be red and blue.....one going toward (IJ vein) and one going away (carotid) from the heart. Showing the two vessels together makes it very clear that they go in opposite directions if normal. Patients have sent me many images where the vein is seen in profile, but alone. cant figure out flow direction like that.

ok. after looking at the IJV at the three areas, she looks for the vertebral vein and artery. again, the two vessels are imaged together and the colors should be opposite.

Great, then she has the patient take a big breath which allows the veins to distend. she measures the cross sectional area of the jugular in its largest dimension.

Then she does a transcranial doppler looking for the deep cerebral veins. (this is the part i find the most difficult) She is looking for reversal of flow. that is always abnormal.

Finally puts the Bmode on and looks at the anatomy, looking for webs, stenoses, valves, etc

THEN She does everything again, in the upright position.

THEN, she does everything on the left side in just that order.

This study is quite challenging to learn. My colleage dan zinn finally got it. just by watching a few cases. It is not necessarily the most difficult but it certainly is quite specific and doing it wrong is going to lead to failures

As I was saying, I have reviewed a lot of studies done around the world. For the most part , they suck. when you get half the views, or the wrong manuevers, one is left with the distinct impression that you have no idea what it all means.

So it is clear that we need to create a standard. that standard needs to be specific, reproducible and simple.

by the time i learn this one, paolo may have perfected a US test that is easier to do with similar reliability.