DrSclafani answers some questions

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

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Postby NZer1 » Wed Jun 02, 2010 2:42 pm

Hi Dr.
Is there a way to check, and compare the out flow blood volume from the brain of an MS person and a normal (what ever that may mean) person?
I am guessing that volume is more important that pressure?
I'm thinking that entry is as important as exit, but the average output would be good for identifying where the search for differences should start.
Feeling better?
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Postby drsclafani » Wed Jun 02, 2010 9:39 pm

MS_mama wrote:Dr. Sclafani, I was speaking with a cardiologist who was unfamiliar with CCSVI but when I was explaining the general gist she did tell me that one thing to keep in mind is that when we do angioplasty, we are, in a sense, "offending" the vein and then there is a tendency to re-stenose and for the vein to become hyperreactive. So, she said, she would theorize that post-angioplasty, a vein may become more severely stenosed than before.

Also, in her opinion, she said that she is unfamiliar with the research but just hearing a little bit about her she would question intervening in a situation where the benefits are unclear. In other words, her view of "do no harm" would mean--do not intervene if there is an unclear benefit, especially in light of the fact that veins do not "like" angioplasty and there are some potential risks, esp of irritating the vein and causing it to become worse off than pre-angio. What are your thoughts on this?

we have had this discussion in the past. When alternatives are not great and when the risk is not great, then a procedure seems warranted. For some of the progressive forms, there are NO treatments. So what could be worse than no treatment for a debilitating disease? Patients seem to be looking at risks and alternatives and making informed decisions. I agree with first do not harm. I also believe in first DO SOMETHING

Lastly, she brought up the issue of going to a university provider vs. someone in private practice, because sometimes the profit motive can cloud a person's judgment as to whether to intervene, whereas university dr's are salaried and so therefore more judicious as to whether to intervene or not (because there is no profit incentive). I'd appreciate any thoughts on this.

Thanks so much for your time and we're all hoping your IRB goes through as soon as possible!


in fairness to doctors who get paid a fee for a service, some of them are the best doctors. They have an ethical stand that does not allow money to distract them from what they do. There are other incentives beside the money. Also some university physicians do work for an income and they get paid based on the amount of work they do

So, i think i agree with your cardiologist. but not just on an economic basis, but on an academic basis. Most people in private practice do just that. they are private. they do not write about their experiences. Some do collect data in private practice. But the truth is, if we want to train doctors to do this in the future, we all need to invest ourselves in the university. if the places where teaching is done do not have the patients, then who shall take care of our children?
Finally, wwho will collect the data and who will write about the sucdessfulness of the treatments. It is really important that we learn from these experiences. Right now, we all understand the desparation and the need to care for oneself. but who will collect the data.
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Postby drsclafani » Wed Jun 02, 2010 9:44 pm

nn98200 wrote:Dear Dr Sclafani,

I had balloon angioplasty in Poland in the middle of March after which I had a great improvement for about two weeks. Afterward most of my improvement went away and I became even worse than before the procedure. Last Thursday I had venography locally (Albany) that found out one more narrowing of about 50-60% at the top of my left jugular vein in addition to the two narrowings the docs found in Poland (one of the bottom of the left and one of the right jugular). Is it possible that the third narrowing appeared as a result of the angioplasty in Poland? I doubt it that they'd miss something like that in Poland and I am afraid it is a result of the angioplasty. But my much bigger concern is that after the 2nd angioplasty here I only had one day, which was the day right after the procedure, that I felt a big improvement of symptoms. Since then I have been feeling just like before the procedure. Of course, I started to think I have restenosis again and I need stenting. But today I talked to the doctor and he expressed the opinion that stenting may be too risky in my case because my veins seem to restenose very fast and the stent(s) may not be able to hold them. He said that if the stent collapses they have no options at all how to help me. I know that there are many people who had stents in Poland and in Stanford (with even bigger stenosis than mine which is about 50% at the three narrowings and Dr Dake didn't do just ballooning at first to check if and how quickly these veins would restenose and decide if a stent is a good option). I forgot to mention that the doctor said he had a patient whose stent collapsed.

By the way, this morning (Wed.) I was stunned by the lightness and the looseness of my legs that I had right after getting up! I walked 100 meters on my own (with little stops) even before taking a shower to loosen my body (a few months ago I could do that but only after taking a shower and far not as well as now)! I felt like I felt a day after the procedure in Poland! Even better than the improvement I had last Friday - the day right after the procedure here! I really thought I had restenosed as I was not doing well since Friday last week! But the issue with stenting remains. I am also worried about the third narrowing the doctor found after the angio here - can a new narrowing pop up after an angio?

I'd really appreciate it if you can share your thoughts on the matter! Thank you very much!!!


we all start by seeing and treating high lesions but mostly what we end up with is believing that the low stenoses are the real culprits

Somehow i think zamboni is right. The IVUS often shows that these higher narrowings are phasic. I hope yours is not and that the treatment will now start to improve things

it would be verally intesteing to look at our first venogram and compare to your second. it is hard to imagine that a real stenosis could pop up so quickly
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Postby drsclafani » Wed Jun 02, 2010 9:47 pm

HappyPoet wrote:Dr. S.,
Your knowledge of MS is most impressive. Why, you know more than all of my past MS specialists, my GP (and his PA), and my radiologist.

I hope you won't mind me saying that your CCSVI research within our state's university system, SUNY (my alma mater), makes me especially proud.

Hoping everyone has a happy day,
~Pam


thanks flattery will get you everywhere. I learn more from you all each day. I wish i could teach my residents and student how much they can learn from those who really have the experience....the patients
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Postby cheerleader » Wed Jun 02, 2010 9:57 pm

If I could just clear up a misconception--in my husband's case, his left jugular vein was closed 95% very high, and for quite some length. Dr. Dake ballooned it for many, many minutes and it collapsed immediately. The decision to stent this vein was not made lightly. He has since had 2 other angios, to clean up the lining and to check for lower stenosis. He has none. He had high jugular stenosis, extending above into the dural sinus (which has been left alone, and is still not normal) This presentation does exist...perhaps not for all patients, but there is always ballooning first in these cases. Dr. Dake is using the internal ultrasound on rechecks if there are any questions. I know this is a learning process, and we all look forward to all the IRB approvals, so these wonderful doctors can work together and share their info...
thanks
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby drsclafani » Wed Jun 02, 2010 10:18 pm

cheerleader wrote:If I could just clear up a misconception--in my husband's case, his left jugular vein was closed 95% very high, and for quite some length. Dr. Dake ballooned it for many, many minutes and it collapsed immediately. The decision to stent this vein was not made lightly. He has since had 2 other angios, to clean up the lining and to check for lower stenosis. He has none. He had high jugular stenosis, extending above into the dural sinus (which has been left alone, and is still not normal) This presentation does exist...perhaps not for all patients, but there is always ballooning first in these cases. Dr. Dake is using the internal ultrasound on rechecks if there are any questions. I know this is a learning process, and we all look forward to all the IRB approvals, so these wonderful doctors can work together and share their info...
thanks


thanks for clearing that up. i am fortunate that i have not had such a case. Not sure how i would handle it

mike is a real pro, as you know
we have shared info. funny how the first two in the states, on opposite coasts to perform the procedures are still now on the sidelines

and over one high lesion that was stented
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Postby CureOrBust » Thu Jun 03, 2010 5:27 am

Dr Scalfani, I truly hope this does not come across in any manner as appearing like "second guessing". Would you think a cutting balloon would possibly make a difference in a balloonings "staying" power? And if it didn't, would the use of a cutting balloon affect to any degree the option to stent in the very same location immediately after?
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Postby Cece » Thu Jun 03, 2010 12:42 pm

CureorBust, they do inflate at lower pressures when using a cutting balloon compared to a regular one, so: good question!! Maybe? The advantage of the cutting balloon comes later, when it appears to have less restenosis.

"Lower balloon inflation pressures (4-8 atmospheres) are recommended with the cutting balloon. The cutting balloon also dilates the target vessel with less force to decrease the risk of a neoproliferative response and in-stent restenosis."
<shortened url>

Lower pressure and less force during dilation = more likely to close immediately?
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Postby 1eye » Thu Jun 03, 2010 8:52 pm

Was he standing up when it collapsed? Sounds a bit like there was negative pressure. Hoses do not flatten on their own. Either you have to run over them with a tractor, or melt them in the hot sun, or something has to be sucking pretty hard on them. Newer hoses are less prone to flattening but once patent, positive pressure should not collapse them - just the reverse, I would think. Or am I missing something? That seems the most likely. Gravity?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby pklittle » Fri Jun 04, 2010 12:08 pm

Cece wrote:CureorBust, they do inflate at lower pressures when using a cutting balloon compared to a regular one, so: good question!! Maybe? The advantage of the cutting balloon comes later, when it appears to have less restenosis.

"Lower balloon inflation pressures (4-8 atmospheres) are recommended with the cutting balloon. The cutting balloon also dilates the target vessel with less force to decrease the risk of a neoproliferative response and in-stent restenosis."
<shortened url>

Lower pressure and less force during dilation = more likely to close immediately?


Are you quoting Dr. Sclafani?
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Postby Cece » Fri Jun 04, 2010 1:14 pm

pklittle, no, it was a quote from the paper that I linked to, although my link didn't work!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby garyak » Fri Jun 04, 2010 4:50 pm

I was asked to repost this here .


My first symptom was also ON. This is very typical of MS. I am an Optometrist myself with MS who has had Optic Neuritis.
To test whether there is vision improvement post liberation I recommend four different tests be done before and after.
1) Have your eyecare practitioner accurately measure visual acuity before and after.
2) Have a Humphrey visual field test before and after.
3) Consider having a test called a Visual Evoked Potential done before and after. This test determines how fast the transmission is along each Optic Nerve and is very sensitive for vision loss from even mild ON.
4) A red cap desaturation test. This can be done on your own. Here are some instructions I copied off the internet;

"The optic nerve is sensitive to red, so when it is damaged, red-colored objects may appear washed-out or faded. Some patients who have optic neuropathy describe a red color as appearing orange or pink.

To test for red desaturation, cover the patient’s weaker eye (if there is one) and ask him or her what color object you are holding. Typically, a red-topped dilating drop bottle can be used for this test. Then, ask the patient to cover the other eye and describe the color relative to the fellow eye.5

Optimally, you should ask the patient to quantify the percentage of red desaturation. For example, if the patient says an object looks 100% red with the stronger eye and 70% red with the weaker eye, record that the patient has a 30% red desaturation in the weaker eye."

Also a test called an OCT can measure nerve fibre layer and disc morphology.
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Postby fogdweller » Fri Jun 04, 2010 5:02 pm

Are all these tests fopr permanent optic nerve damage? Which ones might reflect reversable deficiencies?

Looking for immediate improvement with immediate improved vascularization.
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Postby hope410 » Fri Jun 04, 2010 5:37 pm

Have a great trip, Dr. S. I hope you return full of exciting ideas and a great sense of the wonderful prospects and possibilities ahead for you/us!
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Postby Cece » Fri Jun 04, 2010 5:48 pm

That last one, red desaturation, is something I've had in the past but don't currently...and it reminds me of those comments of people saying after venoplasty that it's like switching from standard to HD.

Thanks, garayak, for reposting here.
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