DrSclafani answers some questions

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

61 year-old double jugular blockage?

Postby JackT » Fri Dec 10, 2010 3:22 pm

I just want to express my appreciation to all those who have commented on, and asked questions about, the pre- and post-procedure scans that Dr. Sclafani posted. As the patient in question, I have a much better understanding of the treatment procedures because of your discussion. Please keep asking the hard questions and proposing potential solutions. Thanks to all and, of course, especially Dr. Sclafani.

Jack
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Postby Cece » Fri Dec 10, 2010 3:28 pm

Hope you are feeling well, JackT, and thanks for letting us discuss your case. :)
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Re: 61 year-old double jugular blockage?

Postby NZer1 » Fri Dec 10, 2010 3:31 pm

JackT wrote:I just want to express my appreciation to all those who have commented on, and asked questions about, the pre- and post-procedure scans that Dr. Sclafani posted. As the patient in question, I have a much better understanding of the treatment procedures because of your discussion. Please keep asking the hard questions and proposing potential solutions. Thanks to all and, of course, especially Dr. Sclafani.

Jack

Hi Jack and welcome,
Jack did you have any sort of diagnosis for your symptoms prior to meeting Dr. S?
As the Dr has already said you managed to have treatment due to not having a MS dx. If you had you would not have been treated, in my understanding, something to learn here.
Hope you are well, and improving,
Regards Nigel
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Postby JackT » Fri Dec 10, 2010 3:48 pm

Thanks for the welcome. For the sake of consistency and accuracy, I'm going to let Dr. Sclafani deal with all questions about my diagnosis and treatment.

Jack
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my two cents worth

Postby hwebb » Fri Dec 10, 2010 8:10 pm

JackT - you're lucky you never got the MS diagnosis. You've avoided the significant risks associated with MS drugs...and restriction of other medical treatments.

On a different point - I often hear and read that hypoplasia is "untreatable". I have two veins that fall into this category (left jugular and azygos..both size problem and valve problems), and both have been treated. I have had significant sustained quality-of-life improvements by having them treated. True - they will never be normal size (using angioplaty treatment alone, anyway). However, blood flow was improved. Don't let doctors just toss you into the "too hard basket". It's such a simple low risk treatment, it's worth a try to see if some improvement can be made to your veins.

Helen
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Postby Cece » Fri Dec 10, 2010 9:18 pm

drsclafani wrote:
NZer1 wrote:The thing that I am interested in also is the lack of MS DX. Could this example be what we are looking for in the way that MS may not be used to exclude treatment when these symptoms that the gentleman presented with are so similar to MS symptoms. Does this make sense?
Can a person be defined differently by symptom type and receive treatment for vascular problems rather than the treatment be linked to having MS?
MS dx is the stumbling block?


Bingo!

It is my understanding that no one can explain the fatigue associated with MS. Since I do not think that MS causes stenoses of the veins, the diagnosis of ms is not relevant to our discussion. This patient does have two comorbidities: MS and thyroid disease.
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Re: 61 year old - double jugular blockage?

Postby drsclafani » Sat Dec 11, 2010 2:09 am

Cece wrote:
drsclafani wrote:While some would attack the right side first, since it was not a very functional vein, i chose to treat the left side first. There is a good argument that treating the nonfunctional side first would be safer, i thought that fixing the easier side would make more sense.

I had assumed the hypoplastic vein was untreatable (like hypoplastic lumbar veins?). Does it respond to ballooning?
THERE IS NO CORRECT OR INCORRECT ANSWER.


There is a technique which attempts to progressively dilate underdeveloped veins as part of the creation of an arteriovenous fistula for hemodialysis. I have begun to explore this option for hypoplastic veins. I will show the images shortly, not that someone asked (knew i could depend upon you, cece!)

UNTIL THERE IS, A RANDOMIZED PROSPECTIVE TRIAL IS UNETHICAL IN MY MIND.

This makes my "support all our doctors" line a little harder to deliver. :(


not sure i understand this. I would not say that ethics are transferable from one doc to another. we each have our own ethical standards.

I'm so much more used to how drug trials are run; it has been eye-opening to see the differences when it comes to this.

yes, i have been saying that we are in a time of discovery, to be followed by a time of refinement,

I wasn't familiar with the term annular constriction so I found this:
Annulus: A ringlike structure, or any body part that is shaped like a ring. Applied to many small ring-shaped structures.

The base of a heart valve that supports the valve's leaflets is called the annulus.


the jugular vein has valves. those valves form on a scaffolding called an annulus. That scaffolding appears to be maldeveloped in some cases. Valves do not open. valves areas do not distend. interesting stuff.
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Postby drsclafani » Sat Dec 11, 2010 2:20 am

NZer1 wrote:As I understand you question, which side first?
I would think that such a decision could only come from a negative experience. To assume that one is beating the odds, by using past experience.
If you look at it from the point of view that getting the simplest problems resolved first , one would assume that if there are 'issues' with the more complicated and you were unable to continue you have done the best/most you could prior.

actually you could make that decision based upon prior successes or failures.
If there was the possibility that the changes to one side will alter the other then there is study required to 'best approach'.


yes that is an important consideration. In this situation, my thoughts were as follows. if i treat the left side first, then i assure myself best opportunity on the side most likely to be improved. ie, the left annular constriction. It is always possible that a procedure must be prematurely stopped without completion. so it is a good idea to make the most of it from the beginning.

on the other hand, the obstruction on the right could possible force blood to the left, if i could get the hypoplastic to have improved blood flow. That might allow the right side to stay flowing.

in the end, i opted to treat the left, more likely successful side first. I thought that if the right side failed, at least i had the left side working.

If there is issues with how must dye can be used before the patient is at risk then it would have to be assessed as a maximum benefit.

yes, there are threshholds for contrast media (dye) toxicity. however in ccsvi it would be rare to reach or exceed those limits
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Postby drsclafani » Sat Dec 11, 2010 2:24 am

Rosegirl wrote:Dr. Sclafanai,

As data is collected for study, is there a component that compares pre-venogram symptoms to post-venogram results? Maybe this would eventually give doctors a tool that might indicate where problems lie based upon a patient's symptoms.

Arlene Hubbard posted some very positive results, but she said they are not collecting this kind of information. Patients are self-reporting, but their comments are scattered over many sites and are inconsistent in both timing and terminology.

This would also be helpful for patients to have some idea of how effective treatment would be on their individual symptom(s). For example, some people have many symptoms and might have a better way to help set their level of expectation.


with the great help and leadership of some computer luminaries among the MS volunteers, a on-line survey of MS symptom is developed which my group will certainly use to follow patients over a long term to track changes in symptoms. Also we are standardizing the way that we will report each of the venographic findings. hopefully there will be some correlations that enable us to refine who benefits from treatment
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Postby drsclafani » Sat Dec 11, 2010 2:34 am

Cece wrote:If "which side first" is one of the questions, there are at least a hundred questions of that degree of specificity. What a job our IRs have before them.

Dr. Sclafani, you must know I have been reading here for eight months and have envied everyone else presenting their MRV images, even when the images were dismissed as "crappy"! If you were inclined to share your thoughts on mine, it is here:
http://www.thisisms.com/ftopicp-146167.html#146167

You have HIPAA permission to comment on this or any aspect of my case now or in the future.

Patient is a 35-year-old female presenting with severe fatigue, a history of foot drop (now recovered) and numbness (now recovered), slight cognitive dysfunction, general daily malaise, "heavy arms," EDSS 0 - 0.5.


actually, i would not think there is hippa issues discussing something on a public forum if the patient writes about it on a public forum.

looking at your mrv, i see lots of distended collateral veins and i do not see the central parts of either ijv. Nice to see the dural sinuses looking pretty good.. However i do not see well the truncular areas of the IJVs.

the MRV is nice to look at but does not change my approach at all.
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Postby drsclafani » Sat Dec 11, 2010 2:37 am

mo_en wrote:Dear Dr.
Since MS is a progressive disease, it sounds plausible that CCSVI should be also. Under this perspective the abnormalities in the case you have described could be related somehow to each other. My belief is that the hypoplasia on the RIJV might have pushed the Left one to its upper limit (in terms of blood flow) instantiated by the very diameter of the valvular ring, which would be wide enough, if it weren't for the hypoplasia on the other side.
So, the breaking of the annulus raised the capacity of the LIJV and might compensate for the flow reduction on the right. However, is it true that it also destroyed the valves altogether? Doesn't this mean than a venous back-jet as proposed by F.Scheling is now more of a case?


yes, this is a consideration but i do not think it is the rip roaring problem that mitigates against treatment. i think that unless the stenosis at the annular area is disrupted, restenosis will be quite common .
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Re: 61 year-old double jugular blockage?

Postby drsclafani » Sat Dec 11, 2010 2:40 am

NZer1 wrote:
JackT wrote:I just want to express my appreciation to all those who have commented on, and asked questions about, the pre- and post-procedure scans that Dr. Sclafani posted. As the patient in question, I have a much better understanding of the treatment procedures because of your discussion. Please keep asking the hard questions and proposing potential solutions. Thanks to all and, of course, especially Dr. Sclafani.

Jack

Hi Jack and welcome,
Jack did you have any sort of diagnosis for your symptoms prior to meeting Dr. S?
As the Dr has already said you managed to have treatment due to not having a MS dx. If you had you would not have been treated, in my understanding, something to learn here.
Hope you are well, and improving,
Regards Nigel


nigel, you misunderstand. MS was an association of the ccsvi in this patient. I choose to focus on symptoms, not on the diagnosis of ms. i am not sure that ms causes all the symptoms, so i focus on ccsvi.
i do not need a diagnosis of ms to proceed, just a diagnosis of ccsvi.

i hope this clarifies this for you.

keep asking if you still are unclear about my intention or philosophy
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Re: my two cents worth

Postby drsclafani » Sat Dec 11, 2010 2:42 am

hwebb wrote:JackT - you're lucky you never got the MS diagnosis. You've avoided the significant risks associated with MS drugs...and restriction of other medical treatments.

On a different point - I often hear and read that hypoplasia is "untreatable". I have two veins that fall into this category (left jugular and azygos..both size problem and valve problems), and both have been treated. I have had significant sustained quality-of-life improvements by having them treated. True - they will never be normal size (using angioplaty treatment alone, anyway). However, blood flow was improved. Don't let doctors just toss you into the "too hard basket". It's such a simple low risk treatment, it's worth a try to see if some improvement can be made to your veins.

Helen


excellent helen
many have put in stents to address this problem. Many have failed or had rapid thrombosis doing this. In my view, we need a better technique. Jack and I tried some things that were risky but together agreed to push the envelope since the damn hypoplastic vein wasnt worth anything to begin with.

kudos for jack for his courage and teamwork!
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Postby drsclafani » Sat Dec 11, 2010 3:00 am

ok, now on to the cool stuff. the hypoplastic vein.

hypoplastic veins are veins that have incomplete growth and remain diminished is diameter. They can be long segments, short segments or have skip areas of normal between hypoplastic areas. They usually happen above the valvulr segments. They can coexist with annular stenoses of the valvular area. They may be so small in diameter that appear to be complete occluded.

The treatment of such veins is challenging because we really do not know how much they can be dilated.

in this case we dilated the vein to 12 millimeters. We reached high pressures around 20 Atmospheres. no balloon "waisting" was seen except at the truncular areas. While there was waisting, it did not go away even with very high pressure. Failing to break that stenosis, will result in early elastic recoil.

Image

followup venography after the angioplasty did not show much change except that less collateral veins were seen.



Image

now what?
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Postby CCSVIhusband » Sat Dec 11, 2010 8:06 am

drsclafani wrote:
Cece wrote:If "which side first" is one of the questions, there are at least a hundred questions of that degree of specificity. What a job our IRs have before them.

Dr. Sclafani, you must know I have been reading here for eight months and have envied everyone else presenting their MRV images, even when the images were dismissed as "crappy"! If you were inclined to share your thoughts on mine, it is here:
http://www.thisisms.com/ftopicp-146167.html#146167

You have HIPAA permission to comment on this or any aspect of my case now or in the future.

Patient is a 35-year-old female presenting with severe fatigue, a history of foot drop (now recovered) and numbness (now recovered), slight cognitive dysfunction, general daily malaise, "heavy arms," EDSS 0 - 0.5.


actually, i would not think there is hippa issues discussing something on a public forum if the patient writes about it on a public forum.

looking at your mrv, i see lots of distended collateral veins and i do not see the central parts of either ijv. Nice to see the dural sinuses looking pretty good.. However i do not see well the truncular areas of the IJVs.

the MRV is nice to look at but does not change my approach at all.


This begs my question ... is MRV just a pretty picture, or is it useful to see where collaterals start? And IF there are collaterals, does that imply stenosis, or do we all have collaterals CCSVI or not?

Can I say I'm tired a lot and get an MRV or doppler and be a "normal" tested? To prove a point that I don't have CCSVI to some ...

Another topic, you've said May Thurner would not be an issue unless there was blockage of the azygous (as was the case with my wife) ... can you speak just briefly as to why? I assume because blood would go through the ascending lumbars to the azygous and then become stagnant due to azygous stenosis(due to the illiac being narrowed).
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