DrSclafani answers some questions

[Nunzio]

Very interesting. Dr. Siskin mentioned to me about finding people where CCSVI was detected by doppler US but not seen on the venogram. He spoke of it as a indication of how unreliable the doppler was, but this would seem to indicate that the venogram was the inaccurate one. Could this be what he encountered?

Exactly; Dr. Galeotti states that if you ask a radiologist during the procedure, he will tell you the veins are normal but dr Galeotti dilates the valves anyway. If you do not do that you will miss all the valve leaflet problems. He says the two tests are complementary. So you pick up some problems with doppler and others by venography.

[1eye]

I volunteer my sister or brother, who are both lawyers. I'll flip a coin and get one... or my other sister who is on an IRB but knows stats and ethics and such.

[thirdday]

Very interesting. Dr. Siskin mentioned to me about finding people where CCSVI was detected by doppler US but not seen on the venogram. He spoke of it as a indication of how unreliable the doppler was, but this would seem to indicate that the venogram was the inaccurate one. Could this be what he encountered?

My question would be, was something missed in the venogram? Was enough dye used? Did the dye go into the correct places? Or are both the ultrasound & venogram results dependant on the doctors interpretation and experience?

[FlashHack]

My understanding is that the catheter actually has to pass through the malformed valve and thus keeps it from misbehaving so it looks like there is no reflux. Once the catheter is removed the the valve returns to it's errant ways and this shows up on a Doppler scan.

[Zeureka]

Very interesting. Dr. Siskin mentioned to me about finding people where CCSVI was detected by doppler US but not seen on the venogram. He spoke of it as a indication of how unreliable the doppler was, but this would seem to indicate that the venogram was the inaccurate one. Could this be what he encountered?

My question would be, was something missed in the venogram? Was enough dye used? Did the dye go into the correct places? Or are both the ultrasound & venogram results dependant on the doctors interpretation and experience?

Guess a lot of all that possible to play a role - experience of the doctor to perform the venogram and doppler certainly crucial!
...and generally as Nunzio already explained the two exams: doppler and MRV are complementary - so never providing identical results - and one can discover some things in the doppler (eg valve issues in jugular) which in the venogram does not necessarily see and vice versa. And furthermore IVUS applied by an experienced doctor helpful to eg also to find additional valve issues in azygos that, as it seems, are often overseen without this technique.
Seems we need several pairs of different eyes/senses to see different things, together with the liberators seventh sense!

[LR1234]

Hi Dr Sclafani,
Would you mid answering a couple of questions

1.If a vein is over stretched during an angioplasty so that it is too wide to place a stent Can this be as detrimental as a blocked or stenosed vein? (As in the case of Rici) especially if reflux still exists.

2. It seems that for many MSers blood flow is a problem not just inverted valves/stenosis/blocked veins.
Are their currently any drugs on the market that could increase the flow through the veins?
I know we have drugs that can raise and lower BP (fludrocortisone/Liprinisol) etc which change the flow through the arteries but I don't think effects the veins do they?
Also Thyroxine raises the heart rate would this help with venous flow?

Could adding some sort of fluid via IV to MS patients veins reguarly help to clean the blood and keep it moving??? (maybe some sort of saline solution or mineral solution)

Thanking you in advance

L

[miranda]

Dear Dr. Sclafani

My son is on your waiting list but unfortunately we did not anticipate such a delay. He fractured his right clavicle about 10 years ago. The orthopaedic
placed a screw which he later removed. He was diagnosed with MS
Sept 2009. I have mailed all his medical reports to Holly. Since he is
in a state of panic as soon as he found out about the delay, he had a
CCSCI DOPPLER EXAM by an inexperienced IR. According to his
findings there was cerebral blod flow disturbances He suggested
an MRV.

Is there a gold standard diagnosis for CTOS? Should he be tested /treated ?


Is there a connection between CCSVI / CTOS/ MS ?

Does any of the above make any sense ? I wonder

Thank you Please try hard to get their approval . We all need you
and will definitely wait for our next appointment

miranda

[pklittle]

Dr Sclafani,

You never cease to amaze me! Thank you once again for all you are doing!

My question is this...

Say a person has ccsvi treatment by a doctor other than you. Can they later swap doctors and have ongoing care/further treatment, if needed, with your team?

Pam

[Trish317]

i will comment later. Been very busy past two days.

only time for the survey details....

now, I am looking for a few good men and women

I am looking for five men and women to review the consent for my trial and give some feedback.

Anyone interested should pm me with their email address so I can send it. I will not discriminate and first five volunteers become friends for life

I'm sorry I missed this, Dr. S., because I'm sure, by now, you've had more than enough people volunteer. But, if you need anymore, please let me know.

[Cece]

Hey, tomorrow is the two-month mark from when Dr. S's trial entered IRB... And it has been said that the IRB process can take two-three months (or longer, admittedly)...so tomorrow is when we enter a window of time in which IRB approval may actually arrive. This is good!

[girlgeek33]

Hey, tomorrow is the two-month mark from when Dr. S's trial entered IRB... And it has been said that the IRB process can take two-three months (or longer, admittedly)...so tomorrow is when we enter a window of time in which IRB approval may actually arrive. This is good!

Pretty sure it was 4/4 or 4/5 that he was put on hold. I know we are all anxiously awaiting for treatment to be back up and going strong. Can't be soon enough, I have many friends, and a cousin, that really need this!

[Cece]

Pretty sure it was 4/4 or 4/5 that he was put on hold. I know we are all anxiously awaiting for treatment to be back up and going strong. Can't be soon enough, I have many friends, and a cousin, that really need this!

Well that's a good two weeks away (for it to be the two month mark)! Ne'er mind!

[Cece]

I have an actual question I was working on...

"PTS develops as a direct result of having the blood clot stay in the vein. The blood clot continues to block the vein and permanently damages its one-way valves, resulting in the pooling of blood in the leg, chronic leg pain, swelling and fatigue and sometimes skin ulcers. It's logical that immediate clot removal will prevent PTS," said Vedantham.

http://www.medicalnewstoday.com/articles/121554.php

This is a quote about a totally different condition, but that line stood out to me...in CCSVI, while sometimes it is likely that the valves were malformed to begin with, might it sometimes be the case that one occlusion leads to a valve upstream being damaged due to the crazy blood flow?

[bestadmom]

The irb was submitted a few weeks ago after weeks of interdepartmental reviews and tweaks. Dr. S's last patient was on April 5th, my co-worker's husband, who is a new person since the procedure.

[drsclafani]

how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow,oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery.

do you see a pattern that would lead you to expectations about abrupt improvements? the easy things to imagine would be type of MS, length of disease, etc.

i'm wondering though about the importance of "little veins", ones that MR can't images at 1.2mm and you can't get at with a catheter.

is there enough of a pattern of brain/spinal lesions that would lead you to expect things more specific than spinal -> azygos?

the correlation between CCSVI and MS seems so high, that it might be the people who don't see dramatic changes are the most interesting cases. they may have just as serious an issue with blockage, but at a finer grain.

Hi Dr. S
First I just have to say (and I know you have heard it before!) thank you, thank you, merci beaucoup for being such a dedicated doctor and generous human being !
So, referring to the previous post, I am sadly one liberated patient with no improvements what so ever (end of March). I did get a stent in the right IJV, but as they don't overstent, I was left with a left IJV at about 60% capacity. Do you think that could be related ? I am going back to Poland for a check-up end of June and I wonder if anything more can be done (they said azygous was fine, they must have looked at the vertebral veins as well, right ?).
I know it's tough to say something, but any ideas would be appreciated !! I sooo want to feel positive changes as well (yep! Duh )
Also, if there is anyone like me, contact me so we can do some constructive brainstorming maybe !!!
Thank you very much !!!
Michelle

what is your classification of your MS? If you are PPMS, you would fit Dr. Zamboni's profiles. In such situations, there has been conjecture that no change may be positive if no change means you did not worsen.
60% capacity means 40% stenosis. I wonder if they measured stenosis of the diameter or stenosis of the area. A forty percent narrowing of the diameter would be greater than 50% narrowing considerd by Zamboni to indicate need for dilatation.

But stenosis is not the only reason to perform angioplasty. Valve stiffness or stenosis can also cause resistance to flow and to reflux

please remain hopeful. There is much to learn about this venous problem. Perhaps we will learn in the future that other treatments will augment Liberation