DrSclafani answers some questions

[drsclafani]

May I ask if the patient saw improvements in her symptoms after you treated her?

Before the procedure the patient had a positive Rhomberg test, that is she could not balance herself with her eyes closed About 90 minutes after the procedure, before leaving recovery, her rhomberg test was negative. The next day she was able to walk much more steadily, mostly without her cane.

Let's hope this gain is held in the long run: She was just treated on Friday.

[Cece]

So, we should start recognizing extravasation (blood flowing outside of the vein due to tears or pokes)!
In this image, I think the extravasation is low in the ascending azygous. You can see where the true vein goes straight up (from the 't' in non-contrast to the 'o' in contrast media). And the extrasation would be the curve of flow off to the right, from below the 't' in non-contrast to the 'd' in contrast media, I think. The flow going off the right above the orange words 'contrast media' was there in the first image which makes me think it is another vein.

[David1949]

May I ask if the patient saw improvements in her symptoms after you treated her?

Before the procedure the patient had a positive Rhomberg test, that is she could not balance herself with her eyes closed About 90 minutes after the procedure, before leaving recovery, her rhomberg test was negative. The next day she was able to walk much more steadily, mostly without her cane.

Let's hope this gain is held in the long run: She was just treated on Friday.

Congratulations to you and your patient. It seems we don't hear as many success stories as we used to. But we still need them.

The IVUS certainly gives you a better picture of the stenosis. I can see where a vein which is flatened out might appear normal if viewed from one direction but if viewed from the edgewise direction it could be seen to be very much narrowed.

[David1949]

Dr. Sclafani
Among your patients who have been previously treated (either by you or others) what is the biggest cause of needing to be retreated?
Elastic recoil?
Intimal hyperplasia?
Blood clot?
New stenosis in a different location?

[drsclafani]

Dr. Sclafani
Among your patients who have been previously treated (either by you or others) what is the biggest cause of needing to be retreated?
Elastic recoil?
Intimal hyperplasia?
Blood clot?
New stenosis in a different location?

Underdiagnosis and underdilatation

[Robnl]

Doc,

Has the undertreatment also something to do with only checking the 'default' veins (azygous/jugs) and not looking at other veins??
In 2010 i was treated in Poland: azy/jugs (no ivus)
In 2011 belgium: azy/jugs . (with ivus)

I improved definitely; but got my doubts when people dont improve if only jugs and azygous are checked. (got the feeling most of the treating docs still look only at the jugs/azy, but maybe i'm wrong)

Would that be a good subject for a coming conference? 'The veins that are related to ccsvi'

[Thekla]

I am wondering whether you are finding any reasons why some patients don't respond or any patterns that might offer clues. Are there other veins that need to be checked? If 'head' related improvements are most common, are there any other approaches to take with lower limb mobility?

[DougL]

If 'head' related improvements are most common, are there any other approaches to take with lower limb mobility?

i don't want to answer for Dr S but i could offer an opinion.

in my "not a doctor" mind, CCSVI is very simple. it means pooling of the blood around the neck area (i know there are lower limb CCSVI too). the heart pumps and blood tries to exit the head/spine region and return to the heart. all of it can't escape because of CCSVI and some pools around the neck and brain area.

if my partner puts her head under water and opens her eyes then her vision is cloudy, she is disoriented. to me that is what CCSVI is like.

lift her head out of the water and look how bright the colors are and how sharp her vision is. that is what treatment for CCSVI is like.

i also believe CCSVI and the resulting pooling of blood is some how related to the damge that doctors label as MS. in some people that damage attacks the nerves that control the lower limbs resulting in mobility issues.

sad as it is, lifing my partner's head out of the water will not fix the MS damage instantly.

the hope is that a healthy brain will be able to repair the damage or relearn around the damage.

i wish i could jump ahead and report any progress. my partner is about to start rehab to see if she can learn to walk without issues again. the signs are all there that she can but MS has had its way for 20 plus years and the road to recovery will be long and hard to travel.

[Cece]

Doc,

Has the undertreatment also something to do with only checking the 'default' veins (azygous/jugs) and not looking at other veins??
In 2010 i was treated in Poland: azy/jugs (no ivus)
In 2011 belgium: azy/jugs . (with ivus)

I improved definitely; but got my doubts when people dont improve if only jugs and azygous are checked. (got the feeling most of the treating docs still look only at the jugs/azy, but maybe i'm wrong)

Would that be a good subject for a coming conference? 'The veins that are related to ccsvi'

Underdiagnosis might be a missed renal vein stenosis due to not checking the renal vein.
Undertreatment might be ballooning a renal vein compression, rather than stenting it.
Are you concerned about your renal vein?

And good question about what might be a good subject for coming conferences. What is likely to be discussed at the Washington D.C. symposium? Starting in 2010, the symposium has been cutting-edge. So what is the current cutting edge? Will Dr. Beggs be back? Will there be superIVUS images to share, or will that be later in the year?

The other veins was a subject of an ISNVD presentation! http://www.thisisms.com/forum/chronic-c ... ml#p186883

[drsclafani]

Doc,

Has the undertreatment also something to do with only checking the 'default' veins (azygous/jugs) and not looking at other veins??
In 2010 i was treated in Poland: azy/jugs (no ivus)
In 2011 belgium: azy/jugs . (with ivus)

I improved definitely; but got my doubts when people dont improve if only jugs and azygous are checked. (got the feeling most of the treating docs still look only at the jugs/azy, but maybe i'm wrong)

Would that be a good subject for a coming conference? 'The veins that are related to ccsvi'

Underdiagnosis:
1. not completely identifying all of the abnormalities either by:
A: not seeing them,
B: not looking for them

2. underestimating the degree of stenosis:
A. wrong guess
B. using fluoroscopy not IVUS

Undertreatment
1. using stents instead of proper balloon size and pressures
2. underdilating
3. not treating all appropriate lesions

[drsclafani]

I am wondering whether you are finding any reasons why some patients don't respond or any patterns that might offer clues. Are there other veins that need to be checked? If 'head' related improvements are most common, are there any other approaches to take with lower limb mobility?

thekla, nice to have a question from you. Seems like a long time.

Some of the reasons that people dont respond or respond for only a short time is underdilatation of the jugular veins or because something else was missed. For example many studies do not show the continuity between the dural sinuses and the internal jugular vein but DO angioplasty of the jugular vein. I have found patients whose jugular veins were now patient but there was no continuity into the brain.

Some things do not seem to respond. For example some septums do not respond well. Some patients develop thrombosis of the vein and this is not going to improve anything. Still other patients have hypoplastic veins and such veins are not suitable to angioplasty many times. Missing stenoses in the azygous vein, perhaps not treating nutcracker syndrome, etc

[Cece]

Dr. Sclafani
Among your patients who have been previously treated (either by you or others) what is the biggest cause of needing to be retreated?
Elastic recoil?
Intimal hyperplasia?
Blood clot?
New stenosis in a different location?

Underdiagnosis and underdilatation

I had thought this wasn't so bad: underdiagnosis and underdilatation can be treated, no harm no foul, and are better than complications.
But then placing a stent instead of properly done ballooning was listed as undertreatment, and there is harm to be had from unnecessary stent placement.
And there is harm in that every procedure costs a significant outlay of cash for those self-paying, and there is an equally significant outlay of hopes, and both may be exhausted after one attempt.
I would like there to be progress at standardizing CCSVI, so that underdiagnosis and underdilatation are uncommon. How do we get there.

[EJC]

Dr S have you seen any (many) patients treated by Donal Reid in Scotland for a second procedure?

Emma had treatment there in Dec 2010 and was one of the early patients, pre IVUS. Donald openly expalined at the time he errd on the side of caution as it was early days. She responded very well to having her valves opened (ballooned) in both ijv's along with her azygos balooned, before the changes regressed over a period of months.

There's always a case for re treatment, but before that's even considered, if you've seen any of his patients, had you noticed a particular pattern emerging?

[David1949]

I would like there to be progress at standardizing CCSVI, so that underdiagnosis and underdilatation are uncommon. How do we get there.

Speaking as an engineer and not a doctor I think there could be disadvantages to standardizing CCSVI treatment too soon. I don't know if best practices have been determined yet. So you might end up standardizing a procedure which is not the best. It would be kind of like saying MS is all about auto-immune and then focusing entirely on that and locking out all other avenues of research.

At this point in the game diversity has some advantages. The IR's all seem to be comparing notes. If someone finds a technique that works well, others can try it out and if it's successful for them too then it will likely be widely adopted.

But that's just the opinion of a slightly crazed engineer.

[drsclafani]

I would like there to be progress at standardizing CCSVI, so that underdiagnosis and underdilatation are uncommon. How do we get there.

Speaking as an engineer and not a doctor I think there could be disadvantages to standardizing CCSVI treatment too soon. I don't know if best practices have been determined yet. So you might end up standardizing a procedure which is not the best. It would be kind of like saying MS is all about auto-immune and then focusing entirely on that and locking out all other avenues of research.

At this point in the game diversity has some advantages. The IR's all seem to be comparing notes. If someone finds a technique that works well, others can try it out and if it's successful for them too then it will likely be widely adopted.

But that's just the opinion of a slightly crazed engineer.

Good commentary. i agree with your assessments