DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby cheerleader » Thu Mar 18, 2010 3:17 pm

drsclafani wrote:
Anyway, maybe my idea of intravascular ultrasound is brilliant! I've had the instrument for many years and didnt find a really good use for it, so I tried it here and it really makes me feel comfortable with my diagnoses.


Sounds brilliant to me, Dr. S. Any chance of sharing the name of the manufacturer of this instrument with your IR colleagues? I think the internal quantification of flow will be the way to go with CCSVI in the future. But venography is still the name of the game for now.

At Stanford, Dr. Cooke and I discussed how in 10 years time this procedure will be perfected. But 10 years is a lot of brain time for PWMS. The pioneers are just part of the learning process...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: vertebral veins

Postby EnjoyingTheRide » Thu Mar 18, 2010 6:30 pm

Rokkit wrote:
drsclafani wrote:both verts were abnormal.

2 different patients, or 1 patient?


It was me. Both of my verts are abnormal. Maybe one day we'll figure out a way to address those issues.
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Postby drsclafani » Thu Mar 18, 2010 8:20 pm

drsclafani wrote:


Anyway, maybe my idea of intravascular ultrasound is brilliant! I've had the instrument for many years and didnt find a really good use for it, so I tried it here and it really makes me feel comfortable with my diagnoses.


Sounds brilliant to me, Dr. S. Any chance of sharing the name of the manufacturer of this instrument with your IR colleagues? I think the internal quantification of flow will be the way to go with CCSVI in the future. But venography is still the name of the game for now.
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cheerleader
i can tell you my impressions but i should give doctors data. They should listen only to facts and advice from people with far more experience than I.
I will learn from these experiences with it and then do the following
1. write about the experience
2. design comparative study of ivus and venogram
3 publish the data with recommendations

science will always be respected by men and women of science. They will listen to that voice

anything else would be underappreicated and not taken seriously
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veins roll and collapse

Postby joanp » Thu Mar 18, 2010 10:16 pm

will this treatment be more difficult for those whose veins roll and collapse?

Mine always do and they can't keep iv's in because of it. Recently, I went for a procedure and my veins blew out 4 times before they could get a needle in. Blood also comes out very very slow and has always done so. Does any of this matter?
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Re: long answer to half of your question

Postby Inge67 » Fri Mar 19, 2010 3:20 am

If I have a problem with valves, could a catheter venography detect this problem? Could a ballooning operation solve valve problems?


Dear Doc.
Thanks for answering half of my question. very qcurious about the last part: Could ballooning solve valve problems?

Inge
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veins returning back to their "old position"after

Postby Inge67 » Fri Mar 19, 2010 4:06 am

Dear Dr. S.

Some skeptics on CCSVI claim that solving stenosis by ballooning is only temporary, and all the improvements noticed will fade away, since veins will return to their "old position"(i.e. collapsed, flattened) after an avg. 3 weeks.

What do you think?
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Postby drsclafani » Fri Mar 19, 2010 5:04 am

will this treatment be more difficult for those whose veins roll and collapse?


will this treatment be more difficult for those whose veins roll and collapse?

Thats an interesting question. never occured to me since the veins we put IVs in are not the veins we are treating or accessing to start the procedure. this experience is great. It is helping me understand the patient point of view.

Wiggly veins in the hand and arm used for putting in IVs are still challenging to me. Despite almost 40 years of putting needles and cathters in these veins, i still find them more challenging than doing the actual procedure. I admire the nurses and technicians who are better at it than I.

The veins we access for the procedure are the femoral veins. These are much larger, deeper, surrounded by stronger tissues than flimsy superficial veins of the hand and arm. They are not visible but we know where they are by feel (they are just to the midline of the femoral artery whose pulse i am sure most of you can feel). If still not found, ultrasound is useful in seeing exxactly where the vein is.

Because of the femoral vein's strong fixation to the tissues, accessing it with the thin needle (about the diameter of a safety pin) takes just a few minutes. Putting in the conduit through which all the instruments go is pretty routine and then we do not touch that vein any more.

the jugular veins and azygous vein are large veins with substantial wall thickness surrounded by tissue that holds them in place. They do not wiggle or roll. Even if they did, we are inside the vein so it wouldnt matter.

So a short question still has no answre!

i would say that the answer is NO, it would not be difficult to do the procedure if you had rolly veins.
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Postby pegmegrund » Fri Mar 19, 2010 5:13 am

drsclafani wrote:this experience is great. It is helping me understand the patient point of view.

This experience of having you here on TIMS is amazing for us. Thank you for the gift of your time, your experience, your insight. To be 'heard' is such a great feeling. Thanks!
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recurrent stenosis after liberation

Postby drsclafani » Fri Mar 19, 2010 5:15 am

Some skeptics on CCSVI claim that solving stenosis by ballooning is only temporary, and all the improvements noticed will fade away, since veins will return to their "old position"(i.e. collapsed, flattened) after an avg. 3 weeks.

What do you think?


Please ask the skeptics the number of patients on whom they have performed venous angioplasty. Ask them the iindications for the treatments they have done. If they do not have personal experience, ask them for the literature on which they base their opinions.

Dr.Zamboni showed that about 50% of patients had recurrence of outflow obstructions after 18 months. I am not aware of any other literature on angioplasty of CCSVI.

But Dr Zamboni was acting cautiously and responsibly on the first go around. We have yet to stratify the abnormalities that resulted in recurrences. Moreover some of us have elected to try to avoid stents on the first go around, like DrZ. A second intervention may be needed and no one has reported on this SECONDARY PATENCY yet.

The largest experience with venous angioplasty comes from treatment of dialysis grafts and fistulas in the arm. We have done that for more than 20 years. This is definitely different disease than ccsvi so we cannot use that experience as a mirror image. Dialysis grafts are punctured every couple of days, often there is synthetic material, etc.

Nonetheless, we know that venous angioplasty and veinous stenting of dialysis stenoses do not have the long term patency of arterial plasty and stenting. But to assert that the dilation of the veins of ccsvi wiill result in only three weeks of relief is irresponsible.
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Postby eric593 » Fri Mar 19, 2010 5:16 am

pegmegrund wrote:
drsclafani wrote:this experience is great. It is helping me understand the patient point of view.

This experience of having you here on TIMS is amazing for us. Thank you for the gift of your time, your experience, your insight. To be 'heard' is such a great feeling. Thanks!


Yes, I feel like this is a shared experience now, like we are all making history together.

An incredible feeling.

Thank you, Dr. S. I am grateful for your presence here beyond words. :)

Now, is "rolly veins" a scientific term? :lol:
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Re: recurrent stenosis after liberation

Postby Inge67 » Fri Mar 19, 2010 5:26 am

drsclafani wrote: But to assert that the dilation of the veins of ccsvi wiill result in only three weeks of relief is irresponsible.


Dr. S.!
Would it be very inapropriate of me to say that I love you?
THANK YOU!
This surely helps the discussion that is currently taking place at the Dutch forum.
Last edited by Inge67 on Fri Mar 19, 2010 5:34 am, edited 1 time in total.
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angioplasty for valves

Postby drsclafani » Fri Mar 19, 2010 5:27 am

Could ballooning solve valve problems?


The valves are leaflets of tissue that are attached to the wall and close periodically by coming together. in ccsvi Some of the valves are thickened mounds of tissue that do not open and close at all, some just do not open all the way, some do not close all the way, some seem to have the leaflets fused partially or completely. , some form pockets adjacent to the lumen and balloon up some times. In all situations they restrict the flow of blood coming out of the neck and brain.

Angioplasty attempts to tear the valve's attachment to the wall or split apart any fusion of the leaflets, or stretch wall adjacent to it. So it is not one question, one problem, or one solution. I do see improved flow, but we will have to wait to understand the natural history of the treatments.

We have a long way to go to understand these problems and determine the best way of treating the various problems. Bottom line, stay tuned. and keep asking the good questions.

Does that help you?
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Re: recurrent stenosis after liberation

Postby hope410 » Fri Mar 19, 2010 5:30 am

drsclafani wrote:Nonetheless, we know that venous angioplasty and veinous stenting of dialysis stenoses do not have the long term patency of arterial plasty and stenting.


Is there no possible better solution then to vein stensoses that might lengthen patency? Any ideas for a better treatment solution? Has this been explored in dialysis stenoses at all?
Last edited by hope410 on Fri Mar 19, 2010 5:34 am, edited 1 time in total.
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view from the coffee bars

Postby drsclafani » Fri Mar 19, 2010 5:33 am

r. S.!
Would it be very inappropriate of me to say that I love you?
THANK YOU!
This surely helps the discussion that is currently taking place at the Dutch forum.!


Wow!
i had no idea that TIMS was a dating service too!!!

i am from new amsterdam, so i am pleased to make your acquaintance.,
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Question for doctor

Postby jak7ham9 » Fri Mar 19, 2010 5:36 am

Hello Dr. Sclafani! Thank you for everything! I think the question on restenosis is unquestionably on everyones mind as honestly we are starting to see reports. example
"Hi Friends, a lot has happened since you last heard from me. Firstly to our great disappointment Ella's vein re stenosed, but luckily as soon as I found out I was able to get onto the clinic in Poland and within a week (17th March) we were back in Katowice where they confirmed that the vein had collapsed again and they put in a stent so it should not happen again. She is two days post op now and beginning to show the improvements that she saw last time before her vein collapsed again.
This is very encouraging because it is obviously connected to the condition of the vein and cannot be attributed to the dreaded placebo effect many people quote at us about this procedure.
The other good news is that the Clinic is going to be offering a training programme news of which European doctors are receiving with considerable interest and enthusiasm as their slot in Italy was cancelled in favour of the training taking place at Buffalo...
Still nothing much happening in UK, but we (ms-ccsvi-uk.org) are going to deliver the petition that closed recently to the Prime Minister on Monday. We got over 10,000 signatures in the space of two months... Shows you and us that the will is there to make this happen."
I get the feeling you think it more prudent to try angio first and then stent which might have higher possibility of complications. Honestly I'd be happy to sign a waiver for the stent but if I have to come back a couple times to get it right if the vein restenosis after angio so be it. I am just happy to get a chance to feel better. Engineering wise if you put a slight flare on the end going towards heart one would think that would help to avoid movement. But I'm just thinking plumbing.
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