This Is MS Multiple Sclerosis Community: Knowledge & Support

1eye, wasn't this for hydrocephalus? This was a shunt outside of the jugular, draining the CSF from one end and depositing it into the jugular in the other? What's interesting is that you and your brother both had cerebral drainage issues.

DrSclafani, here was a question someone asked you, although it didn't land in this thread:
http://www.thisisms.com/ftopicp-137569.html#137569

My question: you once brought up the need for doctors to catch a restenosis or clotting when the vein had only narrowed rather than closed up completely. All I can think of is hypervigilance to any return of symptoms. Did you have any ideas? If this happens, is it safe to wait weeks for a follow-up or is a more immediate response going to be better for outcome?

nunzio
it was my impression that athey did not treat this abnormality. if the azygos vein were obstructed i might consider this, but i could be wrong

i will ask robbie what his experience is, just in case i have misunderstood him

24 hours without a post!

Jugular, to get up to speed on the drsclafani story, try this post:
http://www.thisisms.com/ftopicp-136517.html#136517
or
http://www.thisisms.com/ftopicp-136770.html#136770

We are discussing elsewhere on the forum if a hemosiderin urine test would be of use in CCSVI, as it is in CVI. Zamboni did some research on CVI in the early 2000s that showed the hemosiderin test in CVI was useful in making the diagnosis and in testing afterwards to see if the surgical procedure had been successful. Possible use in CCSVI or false analogue?

Thanks for that Cece and great question!

Cece,

Dr. Sclafani is getting fitted for his Ferrari wheelchair team racing jacket.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Nah, he took Nunzio's suggestion so seriously, he flew to Italy to ask Robbie in person. And pick up that snazzy red jacket while he's there.

It would be nice to have a cheap, non-invasive test to signal when restenosis might have occured to warrant another veinogram. too many false positives (i.e. too sensitive) would still be worth it if it would be a sensitive indicator of when a pt should check for restenosis. Some postings show treated pts with concern almost immediately, some not for months.

The Azygos venous system results from a"deconstruction/reconstruction" of the cardinal veins of the embryo. It results in the azygos and hemiazygos veins, and the jugular veins. The truncal areas are commonly involved with abnormalities in patients with CCSVI. One could make the case that these abnormalities are the result of malformation of those veins as the cardinal venous system changes to the mature jugular azygos system.

In addition to the truncal areas, it is also possible to develop malformations in the azygos vein proper, not just in the valvular area. This results in webs and tissue formation in the azygos veins, that might be a remnant of the immature cardinal system.

These webs are extremely difficult to see because they are small and easily obscured by the contrast media in the main channel. Some practicioners routinely use a semicompliant balloon to interrogate the vein. These balloons have "waists" or indentations when they are inflated because of the resistance to distension resulting from the webs. Thus the contrast media within the balloon is not spherical. This is a sign of webs.

Inflating the balloon to higher pressures results in angioplasty of those veins.

So yes, I think it is an interesting technique but requires balloons that do not exert too much pressure on the wall, ie...semicompliant balloons. A compliant balloon would be preferable but I have not found one in the right shape and length as a product offering.

I like this idea because the webs create pockets of resistance to flow. Failure to diagnose and treat these malformations may reduce successful outcome. However there is always risk of inflation, although it is not common. I would anticipate that there is a risk of thrombosis.Rupture of the vein is unlikely because pressures are not too high.

The area of reflux or the position during reflux does not correlate with the neurological manifestations of demyelination.



it is very difficult to make a recommendation in this circumstance. I have no access to your clinical situation. A 12 mm balloon is a good size for the azygos vein. did you feel pain during inflation. That is a good sign of whether maximum dilatation occured.



I do not like stents and will always try to avoid them. However, you have a very atypical appearance if your stenoses are caused by radiation. There is actually no guarantee to that! You could easily be a patient with MS who developed cancer and then got irradiated. In other words your stenoses could have been a malformation like everyone else has or it could be due to radiation stricture of the tissue that were irradiated. . Were you on immune suppression before your cancer developed?
I think repeated dilatations might be necessary and I would try that before i gave up or considered a stent.



If you are fortunate, many times

the normal vein is very distensible, but the abnormal vein is resistant to stretch. The valvular stenoses are also problematic for the same reason.

i think that stretching the vein might work but elastic recoil must be overcome. I like the idea of overdilating the veins., especially the valves... rearing fusions is not an easy thing to do

yes, fogdweller, i agree with that idea.

the 'rotorooter" idea is used in arteries to pull out plaques on the arterial wall. I do not think they apply hear

The valve opens and closes. We try to advance the catheter when the valve is opened

Nunzio
if the azygos vein is obstructed, then increased flow in that area because of renal vein and iliac stenosis is potentially deliterious. However if there is no obstruction of the azygos, then i think flow will not be overwhelming. Remember that left iliac stenosis is well compensated by using the cross pelvic collaterals into the inferior vena cava

Also, i did not find any mention of treatment of the may thurner sydrome during liberation in their paper.

We need more information

that plastic shunt is probably draining excess fluid from his brain. it is a different animal. Those shunts are draining water like material not high volume blood

good thought, tho!

whoa pardner!

They are just good men and women, trying to assure confidentiality and safety of the volunteers.

i did not appeal because of two insurmountable difficulties in the short term:
1. they wanted this funded by a grant, not paid for by patients.....good point, ideal actually, but i do not see pharma offering to fund this and the catheter manufacturers do not have adequately deep pockets

2. They wanted a double blinded study....i think that is premature, but probably needs to be done once we have figured out safety and best practice issues.

in the meantime, i have been continually exploring all kinds of alternatives, none of which has reached fruition. I am hopeful now, tho