DrSclafani answers some questions

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

Postby drsclafani » Sun Oct 03, 2010 4:50 pm

auburntiger wrote:Dr. S.

I have recently had my balloon angioplasty of the RIJV and LIJV with one of the valves being abnormal. Azygos was noted as ok.

One of the notations in the findings documentation is that the lumbar vein is abnormal due to being enlarged. Is there any explanation that goes along with this type of finding? The doctor said this is rare.


well, many of us havent really been studying lumbar veins that much so what constitutes an enlarged one is open to discussion. If lumbar veins are truly enlarged , one should suspect some obstruction of those veins closer to the heart. Some of the webs and septations in the azygos vein are quite subtle. Perhaps something was underestimated
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Postby drsclafani » Sun Oct 03, 2010 4:52 pm

hopeful2 wrote:Dr. Sclafani, Do you have an opinion on dissolvable stents? There's a thread you may have seen about dissolvable stents on trial in Europe (developed by Abbott Labs).

I realize the biodegradable stents won't be available for a while (if they make it thru trials) but I'm curious what you think. Also, did you have any more thoughts on my venography images (a recent pm). Thanks for all your help with this. :)

Patrice


i eagerly await results of those trials, but i think we should focus on optimal techniques for venoplasty for the time being
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Postby drsclafani » Sun Oct 03, 2010 4:57 pm

fogdweller wrote:Dr. S.

I have ttwo questions:

1. If the jugulars collapse and the azygous drains the brain when the pt is lying down, would radiography of the jugulars when the pt is lying down appear to show a stenosed vessel?

2. If large balloons are used, would the additional "injury" make it more likely that the veins would heal shug, i.e. restenose?


LETS GET THIS STRAIGHTENED OUT

COLLAPSED VEINS ARE NOT STENOSES VEINS
NARROWED VEINS ARE NOT NECESSARILY STENOTIC VEINS

IF THERE IS NO FLOW IN THE JUGULAR VEIN WHEN YOU LIE DOWN, THEN YOUR JUGULAR VEINS WILL BE NARROWED, JUST AS EVERY HEALTHY PERSON HAS NARROWED JUGULAR VEINS WHEN THEY ARE SITTING UP AND THE BLOOD IS DRAINING THROUGH THE VERTEBRAL VEINS.

IF YOU HAVE AN OBSTRUCTION OF YOUR JUGULAR VEINS, THEN YOU SURELY COULD HAVE NARROWED VEINS WHEN YOU LIE DOWN.
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Postby drsclafani » Sun Oct 03, 2010 4:59 pm

belsadie wrote:Dr. S. Hope you can start getting the needed "approvals" so we can have the advantage of your expertise in treating our CCSVI !
My ?: Will being on the original waiting list be the starting point for treatment?...and...will that tx be in Brooklyn?
Thanks for being around during our struggle!


I made it very clear in my original emails in April when I was stopped, that i would be back and i would keep my committments.

I would rather not get into details at this moment
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Postby fogdweller » Mon Oct 04, 2010 12:29 pm

Jugular wrote:
fogdweller wrote:Dr. S.

I have ttwo questions:

1. If the jugulars collapse and the azygous drains the brain when the pt is lying down, would radiography of the jugulars when the pt is lying down appear to show a stenosed vessel?

2. If large balloons are used, would the additional "injury" make it more likely that the veins would heal shug, i.e. restenose?
Not to answer for Dr. Sclafani, but I think the opposite is true regarding your point #1.

You're right, and that explains how they see narrowings and stenosis when they do venography on a pt who is lying down. I don't know what I was thinking. Cog fog I guess.
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MS causes CCSVI?

Postby MS_HOPE » Mon Oct 04, 2010 12:40 pm

Hi Dr. Sclafani. I'm still having trouble understanding why your presentation in Belfast included as its first major point the assertion that MS is the most common cause of CCSVI.

I agree with you that it it has not been proven that CCSVI causes MS, but to me the converse has not been proven either. (There seems to be a strong association between the two, that much is certain.) I'm not a scientist, nor a health professional, but am reasonably familiar with both conditions.

I'm really trying to understand this, and mean no disrespect. Will you please explain why you made the statement: " ... ccsvi has many causes although ms was the most common cause"?

If you believe that MS causes CCSVI, can you share your lines of thought on this and how you came to this conclusion?

Many thanks for your continued presence here. I look forward to hearing your big news.
CCSVI:  Making Sense of MS
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Do we know anything . . .

Postby Squeakycat » Mon Oct 04, 2010 1:18 pm

Do we know anything at this stage in terms of how symptoms relate to specific problems in the veins?

I'm asking this on behalf of someone who has what seems to be an atypical set of symptoms.

She has been judged to be Primary Progressive and is in a wheelchair. Her legs are pretty useless, but otherwise, she has escaped many of the more typical MS symptoms such as fatigue, heat intolerance, cog fog and so on.

Her question as far as CCSVI is whether "standard" treatment focused on the jugulars and to some extent azygous would provide any benefit. As she has been reading patient reports, it seems that changes in things like fatigue and cog fog may well be related to the jugular veins since in many, those are the only ones treated, while issues with lower body control are more likely associated with the azygous, iliac and lumbar veins.

Her more specific question is should she wait until we have answers to questions like this?
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Re: MS causes CCSVI?

Postby drsclafani » Mon Oct 04, 2010 8:17 pm

MS_HOPE wrote:Hi Dr. Sclafani. I'm still having trouble understanding why your presentation in Belfast included as its first major point the assertion that MS is the most common cause of CCSVI.

I agree with you that it it has not been proven that CCSVI causes MS, but to me the converse has not been proven either. (There seems to be a strong association between the two, that much is certain.) I'm not a scientist, nor a health professional, but am reasonably familiar with both conditions.

I'm really trying to understand this, and mean no disrespect. Will you please explain why you made the statement: " ... ccsvi has many causes although ms was the most common cause"?

If you believe that MS causes CCSVI, can you share your lines of thought on this and how you came to this conclusion?

Many thanks for your continued presence here. I look forward to hearing your big news.



Thank you so much. i misquoted myself

i believe the most common association is with MS. There are many entiities that are associated with symptoms of ccsvi but you are absolutely correct that my statement is confusing.

I AGREE WE DO NOT KNOW WHETHER CCSVI CAUSES MS


and sorry for the confusion
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Re: Do we know anything . . .

Postby drsclafani » Mon Oct 04, 2010 8:21 pm

Squeakycat wrote:Do we know anything at this stage in terms of how symptoms relate to specific problems in the veins?

I'm asking this on behalf of someone who has what seems to be an atypical set of symptoms.

She has been judged to be Primary Progressive and is in a wheelchair. Her legs are pretty useless, but otherwise, she has escaped many of the more typical MS symptoms such as fatigue, heat intolerance, cog fog and so on.

Her question as far as CCSVI is whether "standard" treatment focused on the jugulars and to some extent azygous would provide any benefit. As she has been reading patient reports, it seems that changes in things like fatigue and cog fog may well be related to the jugular veins since in many, those are the only ones treated, while issues with lower body control are more likely associated with the azygous, iliac and lumbar veins.

Her more specific question is should she wait until we have answers to questions like this?


Good question

venography may explain her symptoms but may not yield any method of treatment.

On the other hand it is possible that she may also have abnormallities in her azygos vein and jugular veins. If they are present, the discussion might lead her to choose treatment as a possible aid to improve some of her symptoms.

And we do not yet have enough information to know whether treatment would be futile

it is her call.
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Re: Do we know anything . . .

Postby Jugular » Mon Oct 04, 2010 8:41 pm

drsclafani wrote:
Squeakycat wrote:Do we know anything at this stage in terms of how symptoms relate to specific problems in the veins?

I'm asking this on behalf of someone who has what seems to be an atypical set of symptoms.

She has been judged to be Primary Progressive and is in a wheelchair. Her legs are pretty useless, but otherwise, she has escaped many of the more typical MS symptoms such as fatigue, heat intolerance, cog fog and so on.

Her question as far as CCSVI is whether "standard" treatment focused on the jugulars and to some extent azygous would provide any benefit. As she has been reading patient reports, it seems that changes in things like fatigue and cog fog may well be related to the jugular veins since in many, those are the only ones treated, while issues with lower body control are more likely associated with the azygous, iliac and lumbar veins.

Her more specific question is should she wait until we have answers to questions like this?


Good question

venography may explain her symptoms but may not yield any method of treatment.

On the other hand it is possible that she may also have abnormallities in her azygos vein and jugular veins. If they are present, the discussion might lead her to choose treatment as a possible aid to improve some of her symptoms.

And we do not yet have enough information to know whether treatment would be futile

it is her call.
Further to the above, how does CCSVI account for spinal cord lesions in the upper neck?
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Postby fogdweller » Tue Oct 05, 2010 9:34 am

I realize we don't know for certain, but do you think it likely that vein "injury" and subsequent healing over as a result of stretching by balloon angioplasty might result in restenosis? I am one week post angioplasty, and my jugulars which were stretched with one of the larger balloons they had (20 mm?) are still sore.
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Postby sbr487 » Tue Oct 05, 2010 10:45 am

Dr. S hope you are doing good!

I have just couple of questions.
Please ignore them if these have been already discussed (and I will understand and search around)

- There have been some reports of people having worsening of symptoms for a brief period (this is post procedure) only to recover within a day or two. Can you bring up this point with your colleagues when you happen to participate in CCSVI discussions?

- Generally, venogram is considered as a gold standard to study ccsvi. We have also discussed about how stenosis can be present without reflux and intervention is warranted only if reflux is seen. Does venogram also show reflux? If not, can one depend on it alone to make a decision about venous correction?

Thank you ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby David1949 » Tue Oct 05, 2010 2:23 pm

When the angioplasty balloon is inflated in a vein does it temporarily block the blood flow? If it blocks blood flow through portions of the brain would the brain cells begin to die? Is there a time limit on how long the balloon can remain inflated without doing damage?
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Re: Do we know anything . . .

Postby drsclafani » Tue Oct 05, 2010 9:34 pm

how does CCSVI account for spinal cord lesions in the upper neck?


The theory is that outflow obstruction of the cerebrospinal venous flow results in luxuriant vicarious collateral perfusion through vessels not developed to handle such flow. This may result in loss of integrity of the small veins and result in "backwash" damage to the spinal cord.
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Postby drsclafani » Tue Oct 05, 2010 9:40 pm

fogdweller wrote:I realize we don't know for certain, but do you think it likely that vein "injury" and subsequent healing over as a result of stretching by balloon angioplasty might result in restenosis? I am one week post angioplasty, and my jugulars which were stretched with one of the larger balloons they had (20 mm?) are still sore.


it is possible that there is vein wall injury, especially to the intima of the vein. This may result in platelet aggregation and adherence to the site of injury and result in thrombus formation that will organize into stricture. It is also possible that microperforations occur in the vein and these may result in scar tissue that can indeed narrow the vessel.

Thus platelet aggregation inhibition is attempted by using antiplatelet medications such as aspirin and plavix and anticoagulants are administered to prevent thrombosis.

Nonetheless, i think that the predominant cause of restenosis is inadequate dilation to begin with rather than scar tissue. The narrowins are not caused by inflammation but rather by stiffer collagen and by malforomed valves that do not move properly and may be fused. Stretching this is difficult and it is hoped that the large balloons that were used on you and multiple dilatations will result in stretch that persists. I thiink early results are encouraging but it is too soon to tell.
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