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Hi everyone,

I'm starting a new thread because Dr. Sclafani said something that really captured me (and many others!) so I sent the info to Dr. Simka. From what I've read here, he appears to already know about it. Anyway after posting on Dr. Sclafani's thread I have received numerous private messages wanting to discuss it further and asking if I've heard back from Dr. Simka. The answer is no... but if and when I do, with his permission I will gladly post. I will see him on Sat. June 25th if not sooner.

I'm happy to talk privately but I don't know anything... other than what I've researched... so let's talk about it here. I appreciate the private messages because of the need to keep Dr. Sclafani's thread clear of discussions among ourselves so he doesn't have to wade thru so much. This is what Dr. Sclafani said on page 127 (or was it 128? oh well close enough) and you can read the responses afterward on his thread. The emphasis in bold is mine:

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.

Now until Dr. S is able to respond to all the questions we will just be speculating here, but his thread is SO long now and this seems important.

I looked up May-Thurner Syndrome -- wow, very interesting:
http://my.clevelandclinic.org/disorders ... drome.aspx

I asked Dr. S if this syndrome might explain edema and purple discoloration in the feet. I'm not suggesting I have the syndrome but I'm curious. He's not available to post right now so I don't know any more than what you see here.

There's probably more research around here someplace.

Pam

Thank you for starting a separate thread Pam.

As I said in Dr. Sclafani's thread, Dr. Siskin responded to my e-mail enquiry that yes, they do enter on the left...

what I failed to mention is that he said:

"This is a recent change that we made" (!)

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

Then, maybe there IS hope for me?

I interviewed Dr. Simka several weeks ago and asked him if he checks the lumbar veins the answer is no he does not.

The lumbar veins are usually showing agenesis meaning they simply didn't develop correctly according to Dr. Zamboni's papers this is not something that can be repaired.

The problem with all of this is that there are going to be other things like this that aren't understood yet but that will be understood over time as doctors run into it and begin to describe it in the literature for others.

I think one of the most terrible things that happened is this demand for double blinded trials when people still don't know what they're looking for in all the different possible presentations.

most terrible things that happened is this demand for double blinded trials when people still don't know what they're looking for in all the different possible presentations.

I should clarify that what I mean by that is that observational trials should be undertaken so that doctors can see what they're looking at without the necessity of being blinded which is absurd at this point in time.

Trials are vitally important. Once people know what they're looking for and what they're looking at and there is a procedure that is well described exactly what needs to be checked, you could do a blinded trial but until then it's premature because people can do poorly after the procedure not because it doesn't work, but because people don't know what they're doing yet.

I agree with you. I think what gives me pause is this: Maybe it can't be treated and maybe it's even riskier in some way to enter from the left, but what can we learn from it? What if no other stenosis is apparent? It would give answers I think.

Pam

AH ... but I think a key point could be ... why are these other veins under developed?

Let's not forget if the azygos is the problem, the lumbar veins flow directly into it.

So MAYBE they didn't develop properly because the azygos was blocked and blood had to find a separate way around the lumbars so as to not back-up from the azygos blockage. So they never got proper nutrition to develop.

AFTER the azygos blockage is released, then blood would flow through the lumbars providing regular nutrition and allowing them to finally develop.

Let's not forget the body is miraculous ... it will do things like this.

All of this is very interesting, lots of valid points. This forum is so smart. Here's another question. If a person has May-Thurner syndrome, wouldn't it be an important thing to know? I mean... it can lead to deep vein thrombosis (which is how M-T syndrome is usually discovered). DVT can be life threatening. I for one do not suspect DVT and I think it would be counter-productive to be paranoid about it... but... I will certainly be much more vigilant and not shrug off any symptoms of DVT to "wait and see," losing valuable time, which is what I would normally do rather than run to the doctor.

Pam

mrhodes40 wrote:I interviewed Dr. Simka several weeks ago and asked him if he checks the lumbar veins the answer is no he does not.

The lumbar veins are usually showing agenesis meaning they simply didn't develop correctly according to Dr. Zamboni's papers this is not something that can be repaired.

So if he can not fix it, why did he explicitly choose to enter on the left? and Dr Sclafarni has been "converted" also?

mrhodes40 wrote:The lumbar veins are usually showing agenesis meaning they simply didn't develop correctly according to Dr. Zamboni's papers this is not something that can be repaired.

So not being able to repair something means pretending it can't be a cause or contributing factor?

I know, you're just quoting and not asserting. I'm still amazed, as I can't imagine Drs Simka and Kostecki not knowing how Dr Z does things and why.

I'm intrigued by the mention of the kidney vein above. Could there be some link to the hypourecemia seen in MS patients?

This just in from Dr. Sclafani (thanks Doctor!!):

2. The reason to look for a May thurner syndrome is not because anyone thinks there is an association. Zamboni only found about 3 patients in more than 100 patients.
The reason to look is that WHEN it is present, blood is shunted through the ascending lumbar vein through the perivertebral plexus and into the azygous. Obviously if there is azygous or lumbar vein problems, it is possible that it might affect the collateral flow of the CSV system.

So not being able to repair something means pretending it can't be a cause or contributing factor?

All I am saying is that Dr Simka told me that as of this time they do not check the lumbar veins. Dr Zamboni thinks patients would want to know repairable or not.

From my perspective the much larger issue is people thinking treatment didn't work when they don't 'seem' better after treatment. If it was me id rather know it was unrepairable than be ignorant and fruitlessly search more treatment options.

it is not known what impact treating, say, the jugulars, might have on someone with lumbar agenesis. it may be that it helps not at all, or perhaps a tiny bit but they progress slower than before. no one knows right now...

what if the lumbar veins or any of the veins in some ms people aren't actually deformed from birth but because of a trauma they are actually being restricted because of a shift in the muscle or bone or perhaps twisted. i won't even pretend to have the kind of medical knowledge that so many on this site do. but i do know for sure that until i had a bad trauma i was in perfect health. i have always tried to get dr.'s to check the circulation system for yrs. because of what my body was doing and the symptoms especially the earlier yrs. they would look at me like i was nuts or just be plain rude. then along comes ccsvi. i would lay on that table all day if they would somehow check out every vein. i know at this point and time maybe they can't correct all the veins but at least they would be aware of what is involved and maybe give them the big picture and more understanding so they would be able to soon. it might answer why everyone responds to ccsvi treatment differently.