DrSclafani answers some questions

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Re: DrSclafani answers some questions

Postby drsclafani » Fri May 09, 2014 10:34 pm

1eye wrote:I have been vacillating about your treatment for a long time, even though my first treatment, at another clinic, was a success for a year and still had had some effect.

One thing that puzzles me: when I had arterial stents put in my chest for a heart attack, the drug regimen was a year of plavix, and a single adult dose of aspirin for the rest of my life. Do you think it should be significantly different for veins?

Is there any reason for this, if it should? My venoplasty more than a year later was treated with six months of plavix, and I wonder i that could be a reason for my backslide. It happened after more than a year, and was gradual. Mind you, I don't know how well my arterial stents are doing, and i have had one pretty significant angina attack.


Plavix and aspirin are both platelet inhibitors and neither prevents thrombus from forming. Platelet inhibition is important when using stents, especially in small blood vessels. . However stents are used infrequently in ccsvi so we are more focused on treating potential thrombosis more than intimal hyperplasia My regimen for example uses pradaxa for one month and aspirin to inhibit platelets and reduce inflammation for 6-12 months

I have not used plavix as i dont think it is necessary for the treatment i am performing.

I think that early regression after treatment of CCSVI is often caused by treatment with balloons that are undersized. other reasons are many...i think the most important are missed stenoses that go unrecognized, elastic recoil of tough thickened valves among others
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Re: DrSclafani answers some questions

Postby 1eye » Sat May 10, 2014 2:41 pm

Thank you very much for your response. I don't know what is considered early regression. I think I was lucky compared to many others, and I'm still using the walker, though I can't get very far. I can still get miles on my recumbent tricycle, though I am way out of shape since last November. Wrong part of the world. I've gone out three times only, but it's still May. Coming up to four years... Still trying to do piano by ear: very hunchbacked. Very lopsided on the tricycle.

Would there be any benefit to a longer period of pradaxa, or are you out of danger from thrombosis by 1 month? Is the aspirin an adult or a baby dose? I decreased mine, but I'm thinking of going back to 150 mg., my heart prescription.
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Re: DrSclafani answers some questions

Postby drsclafani » Tue May 13, 2014 7:47 pm

1eye wrote:Thank you very much for your response. I don't know what is considered early regression. I think I was lucky compared to many others, and I'm still using the walker, though I can't get very far. I can still get miles on my recumbent tricycle, though I am way out of shape since last November. Wrong part of the world. I've gone out three times only, but it's still May. Coming up to four years... Still trying to do piano by ear: very hunchbacked. Very lopsided on the tricycle.

Would there be any benefit to a longer period of pradaxa, or are you out of danger from thrombosis by 1 month? Is the aspirin an adult or a baby dose? I decreased mine, but I'm thinking of going back to 150 mg., my heart prescription.


the anticoagulation is for the short time while the veins that have been stretched by angioplasty have time to heal. That should occur within a month.

I would never presume to advise you since you have cardiologists who have advised you to take aspirin of a particular dose. I would follow your cardiologists recommendations.
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Re: DrSclafani answers some questions

Postby drsclafani » Tue May 13, 2014 7:51 pm

I wanted to share this topic which has its own thread TOS aka thoracic outlet syndrome

CureIous wrote:Haven't read up too much on it, but have a friend that was dx'd with a TOS variant involving subclavian vein compression from the costoclavicular ligament which lies between the first rib and clavicle. Myriad of CCSVI type symptoms and even into the spinal column. From what I've read it is correctable, just wondering what kind of specialist she should seek out. Ideas?
Thanks.



drsclafani wrote:TOS is the least common of the inflow lesions of ccsvi. Unlike the outflow obstructions of the jugular veins, dural sinuses and azgos vein, the inflow lesions augment the blood flow within the obstructed cerebrospinal venous circulation. Nutcracker compression of the left renal vein, the most common of these disorders, is seen in about 65% of PwMS. When the left renal vein is obstructed, alternate pathways direct the venous outflow of the kidney through the cerebrospinal venous circulation. Similarly, but a much less common or significant inflow lesion, when the May Thurner syndrome obstructs the left iliac vein, some of the venous outflow of the leg is driven into the cerebrospinal venous circulation. Lastly, the least common is the thoracic outlet syndrome (TOS). Most TOS in compression of the nerves, not the vein. When the vein is obstructed, it usually does not cause CCSVI because the collaterals of the subclavian vein are the chest wall and superficial neck veins. It is possible that they can augment blood flow in the cerebrospinal venous circulation.

That being said, I might think that it is not the TOS causing these symptoms. The patient should have an evaluation of the usual venous suspects such as the internal jugular veins, azygos vein and the left renal vein.
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Re: DrSclafani answers some questions

Postby Cece » Wed May 14, 2014 3:54 pm

it's a useful way to think of it to classify CCSVI into 2 groups: outflow obstructions and inflow lesions

outflow obstructions being self-explanatory at this point

inflow lesions being the result of secondary veins that, because of their own blockage, redirect flow into the veins draining the head/spine and impair the drainage there

Only issue is that the word "lesion" means white matter lesion to pwMS and it is hard but not impossible to think like an IR and use lesion to mean blood flow anomaly or obstruction. Under the category of inflow lesions, internal jugular vein valve insufficiency (weakened valves not ccsvi valves) could qualify, specifically thinking of patients with transient global amnesia having greater likelihood of IJV insufficiency.

Great food for thought.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed May 14, 2014 9:00 pm

Cece wrote:it's a useful way to think of it to classify CCSVI into 2 groups: outflow obstructions and inflow lesions

outflow obstructions being self-explanatory at this point

inflow lesions being the result of secondary veins that, because of their own blockage, redirect flow into the veins draining the head/spine and impair the drainage there

Only issue is that the word "lesion" means white matter lesion to pwMS and it is hard but not impossible to think like an IR and use lesion to mean blood flow anomaly or obstruction. Under the category of inflow lesions, internal jugular vein valve insufficiency (weakened valves not ccsvi valves) could qualify, specifically thinking of patients with transient global amnesia having greater likelihood of IJV insufficiency.

Great food for thought.


Cece
not just IRs use the word "lesion" to describe and "abnormality" it is a catch all phrase

The lesions in MS are one type, but not the only type. A semantical question.

incompetent valves that allow reflux into the head are indeed present in patients with transient global amnesia. and it does transiently increase flow into the cerebrospinal veins. however the valve is rarely obstructed so the effects are somewhat different that those described as ccsvi.

Other "lesions" that can be considered inflow abnormalities include dural arteriovenous malformations and spinal arteriovenous malformations. These are shunts between high pressure arteries and low pressure veins that drive arterial blood into the cerebrospinal venous circulation.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed May 14, 2014 10:37 pm

We have not had a case study in quite some time. This one was very interesting to me

The patient was a 37 year old woman with RRMS diagnosed in 2000. Symptoms at current time include fatigue, heat intolerance, head and neck pain, imbalance, numbness in both hands, weakness in both arms and legs with spasticity and requiring a wheelchair for long distance ambulation, urinary retention and constipation. She also complained of abdominal pain for many years. She had undergone extensive workup and diagnostic testing, including endoscopies, and imaging. She did not have any blood in the urine or history of kidney stones. It was thought by her neurologist that the pain might be caused by MS. Physical signs included spastic paresis of both upper and lower extremities, loss of vibratory sense in both feet, imbalance and cranial nerve deficits.
She had undergone treatment of CCSVI in 2011 at another institution which included angioplasty of both internal jugular veins with 10 mm and 12 mm balloons. She had symptomatic improvements that lasted for five months; then all symptoms came back and some were worse than before.
I thought that 12 mm balloons had been a bit small for both jugular veins. In my experience 14 mm is the average and 8mm to 26 mm is the range of balloons. Evaluation of the left renal vein, the left iliac vein and the left ascending lumbar vein were not imaged. IVUS was not used.
It seemed quite possible that inadequate treatment had been performed. I agreed to re-image and treat the patient.
The right internal jugular study was as follows:

Image

The first two images (top row left) show the dural sinuses. There is reflux from the right transverse sinus into the left transverse sinus and then on into the left internal jugular vein. There seem to be stenoses of both internal jugular veins at the clavicles. The next four images in the top coolumn show evidence of high grade stenosis of the valvular segment with reflux under the valve into the valve sinus.
In the lower row first two images on left IVUS is shown. There is incomplete opening of a thickened valve. The IVUS on the right outlines the valve opening and compares it to the vein area itself. The numbers below show that this represents a 66.5% stsenosis. The cross sectional area of the vein (the blue circle) measures 92.5 square millimeters. A balloon of 12 millimeter diameter has a cross sectional area of 113 square millimeters. This balloon will barely stretch the vein at the area of the valve. Any of you who have seen the bulging neck veins of a weightlifter knows how much a vein can distend under normal circumstances. My general practice is to distend the vein to about 150% of its measured cross sectional area. In this case, that would be a 14 mm balloon (csa = 150 square millimeters)
The two images on the right show the constriction of the stenotic valve during balloon inflation and the venogram after angioplasty.


LEFT INTERNAL JUGULAR VEIN

Image

A&B show the dural sinuses. There is no reflux. However at the bottom of B, there is a suggestion of narrowing. A selective study lower down in C clearly shows a significant stenosis (red arrows). The IVUS cross sectional views (E&F) and the composite coronal image (G) show thickened tissue that may represent a valve or a septum dividing the vein into two channels. While not shows, the cross sectional area of the vein in E measured about 160 square millimeters. Based upon my 150% balloon size algorithm, a balloon of about 250 square millimeters is necessary. That equates to an 18-millimeter diameter balloon. (figure D). After angioplasty (H) the vein diameter is much improved and flow was faster.
We have discussed many times how it is common to underestimate balloon size without IVUS and I am not showing this case for that reason. Rather I thought that the most interesting component was the renal vein imaging.

LEFT RENAL VEIN

Image
The image on the left (A) is the venogram of vein of the left kidney. The darkness (density) of the contrast media is less in the circled area where the vein crosses between the aorta and the superior mesenteric artery as can be seen in Image C. The narrowed cross sectional area (in green on figure D) represents the renal vein at the area of narrowing. In Image D you can see that the vein is compressed between the SMA and the aorta. On the longitudinal vein (Image E) the narrowing in Green clearly indicates the stenosis. The calculations in image D show that this stenosis is greater that 95%. Images F and G faintly show the outline of the stents.

So why do I show this case? We have seen renal vein compressions in many other case studies. My recent analysis has shown that the incidence of renal vein compression stenosis is much more common and the degree of stenosis are much more severe in patients with MS when compared to healthy controls.

The patient's clinical symptoms included severe abdominal pain that was relieved only by lying down. She has underdone multiple endoscopies without detecting any abnormalities. In the absence of objective findings, some believed that the inflammatory brain and spine disease was the cause of it.
I will now quote the patient's subjective results of stenting:

patient response five days after treatment wrote:I hope this email finds you well. I wanted to give an update on my situation, but before I do I wanted to reiterate how thankful I am for all that you have performed on me and on so many others. Again, thank you.

My parents and I left Brooklyn Saturday at 11:00 and drove back home. We stop every two hours of less so that I could stretch my leg and walk. I tried to walk as much as I could but the pain was very intense (pain from the stents in my back).

Since my intervention last Friday, I have notice improvements. My vertigo is almost gone, my balance is better, my foot drop is less, my bladder works better, so far no headaches, but the most amazing improvement is that my stomach pain is gone! I wasn't expecting for that and that was the worse of all of my issues. I can now eat without having to lie down immediately after, I am able to live in a more normal way. This is simply incredible!

The back pain from the stents is very slowly diminishing. I only take Tylenol.


Nutcracker syndrome, like CCSVI, is another entity that is not universally accepted as a clinical problem. Some say that it occurs in healthy patients. However it does cause pain and that pain may resolve after relieving the obstruction. This is not the first patienet who had pain relieved by stenting. In one patient that patient just expected to live with this pain, having never spoken to her doctor about it. This pain is often ascribed to ovarian pain, ovulation, muscle strain, and now even MS. I think that occlut abdominal pain without an explanation should be evaluated for nutcracker because of the high incidence. If one is not undergoing venography for ccsvi diagnosis and treatment, MRI or CT venography of the abdomen can pinpoint the compression. Venography is considered the Gold Standard for diagnosis but I believe that IVUS is by far superior to venography in assessing this compression stenosis.

Any questions?
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Re: DrSclafani answers some questions

Postby Cece » Thu May 15, 2014 7:23 pm

She had symptomatic improvements that lasted for five months; then all symptoms came back and some were worse than before.

I wonder why they came back worse than before.
The numbers below show that this represents a 66.5% stsenosis. The cross sectional area of the vein (the blue circle) measures 92.5 square millimeters. A balloon of 12 millimeter diameter has a cross sectional area of 113 square millimeters. This balloon will barely stretch the vein at the area of the valve. Any of you who have seen the bulging neck veins of a weightlifter knows how much a vein can distend under normal circumstances. My general practice is to distend the vein to about 150% of its measured cross sectional area. In this case, that would be a 14 mm balloon (csa = 150 square millimeters)

I like the exact numbers.
Do you happen to know if weight-lifters end up with larger than average neck veins, or if after repeated distention they still return to the original size?
However at the bottom of B, there is a suggestion of narrowing. A selective study lower down in C clearly shows a significant stenosis (red arrows).

You could've tested us on B, it looked normal to me on first glance, and only after being told there was a suggestion of a narrowing did I look again. In C, it is obvious.
Rather I thought that the most interesting component was the renal vein imaging.

And now I've gotten to the most interesting component, and I've got to break for the night.
Gives others a chance to respond too, I suppose!
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Re: DrSclafani answers some questions

Postby DougL » Fri May 16, 2014 3:48 am

Cece wrote:I wonder why they came back worse than before.

this is just a wild guess and not based on any medical training.

when you have something wrong such as a numb leg, after years you kinda get used to it. it still is terrible but you live with it.

take it away for 5 months and you completly forget what it was like. bring it back and the mind might think it was worse than before when in fact it isn't
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Re: DrSclafani answers some questions

Postby drsclafani » Fri May 16, 2014 9:55 pm

DougL wrote:
Cece wrote:I wonder why they came back worse than before.

this is just a wild guess and not based on any medical training.

when you have something wrong such as a numb leg, after years you kinda get used to it. it still is terrible but you live with it.

take it away for 5 months and you completly forget what it was like. bring it back and the mind might think it was worse than before when in fact it isn't


That is my initial thought as well, doug


DrS
however progression of symptoms after a year could also be an explanation
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Re: DrSclafani answers some questions

Postby Cece » Sat May 17, 2014 9:24 pm

drsclafani wrote:Unlike the outflow obstructions of the jugular veins, dural sinuses and azgos vein, the inflow lesions augment the blood flow within the obstructed cerebrospinal venous circulation.

Can I call it inflow shunting, or is that a misuse of the word shunting? If I say inflow, is it obvious that it is venous inflow and not arterial inflow, or does that need to be specified?

It's such a simplifying concept. Venous inflow shunting can encompass May Thurner and renal vein obstruction and that any-port-in-a-storm case study from awhile back (where chemotherapy damaged the subclavian vein and the flow was rerouted up and into the IJV), just as outflow obstructions encompass valves and septums and other abnormalities. Love it.
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Re: DrSclafani answers some questions

Postby Ernst » Tue May 20, 2014 5:03 am

Wow, this thread is huge. Im not sure if this is asked here: Sir Sclafani, how common or rare is that a patient wasn't diagnosed with CCSVI in some other clinique, but you find CCSVI?

I ask cause, one MS patient I know was in Poland and with doppler and then venography.. everything seemed to be ok - no CCSVI was found. Patient was not pleased cause there was nothing to fix and diagnosis was quite expensive (doppler + venography).

Thank you , Sir.

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Re: DrSclafani answers some questions

Postby drsclafani » Tue May 20, 2014 8:16 am

Ernst wrote:Wow, this thread is huge. Im not sure if this is asked here: Sir Sclafani, how common or rare is that a patient wasn't diagnosed with CCSVI in some other clinique, but you find CCSVI?

I ask cause, one MS patient I know was in Poland and with doppler and then venography.. everything seemed to be ok - no CCSVI was found. Patient was not pleased cause there was nothing to fix and diagnosis was quite expensive (doppler + venography).

Thank you , Sir.

- Ernst


Ernst
welcome. We have been doing this since early 2010. I think we all love the interactive nature of the conversation and look forward to more dialogue from you.

this question has not been asked before!

I would start by saying there are many patients who had abnormalities seen in Brooklyn that were not visible, recognized, detected or treated in other centers. The most common abnormalites that were not detected included Azygos valve stenoses (we detect them by Intravascular ultrasound, IVUS) and renal vein compression syndrome (we study for this and find it in almost half of PwMS).

The most errors or omissions occurred in 2010-2011, but still occur without the use of IVUS.

Thanks for knighting me, but alas I haven't done anything worthy of that. I am a professor, but do enjoy the nightlife of New York City, if that is what you mean.

DrS
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Re: DrSclafani answers some questions

Postby drsclafani » Tue May 20, 2014 8:19 am

Cece wrote:
drsclafani wrote:Unlike the outflow obstructions of the jugular veins, dural sinuses and azgos vein, the inflow lesions augment the blood flow within the obstructed cerebrospinal venous circulation.

Can I call it inflow shunting, or is that a misuse of the word shunting? If I say inflow, is it obvious that it is venous inflow and not arterial inflow, or does that need to be specified?

It's such a simplifying concept. Venous inflow shunting can encompass May Thurner and renal vein obstruction and that any-port-in-a-storm case study from awhile back (where chemotherapy damaged the subclavian vein and the flow was rerouted up and into the IJV), just as outflow obstructions encompass valves and septums and other abnormalities. Love it.


cece
it is a shunting is a term mostly for arterial to venous shunting. I would not use it to describe collateral pathways.
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Re: DrSclafani answers some questions

Postby 1eye » Thu May 22, 2014 5:20 am

The most errors or omissions occurred in 2010-2011, but still occur without the use of IVUS.

I'll drink to that, though I think you're being modest and you could do better than most with the catheter alone.

Thanks for knighting me, but alas I haven't done anything worthy of that.


Though I think Ernst had very good intentions, some Americans would not be complemented (like George Washington). There is even what Dave Clark, Senior Research Scientist, MIT Computer Science and Artificial Intelligence Laboratory, famously said at a meeting in Boston, in 1992: http://groups.csail.mit.edu/ana/People/DDC/future_ietf_92.pdf
We reject: kings, presidents and voting. We believe in: rough consensus and running code.
The speech was very prescient, too, about terrorism. Not monarchist, nor democratic, but then terrorists can use mail gateways, too. Medical science could use a few lessons from Dave, and from you, too, Dr. Sclafani.

Here in Canada, we had Conrad Black, convicted a felon in American court, who gained a lordship and lost a newspaper empire.

There are some things even democratic republicanism is not good for, and science is one of them.

Questions:

1. Why do ballooned veins sometimes get worse?

2. CCSVI: is age a problem, or length of time untreated?

3. If this thing some call MS is an invading creature, why does it leave its victims alive for so long, and not leave them altogether after a while, like other acute infections do? Is it really a chronic infection, or a symbiosis?

enjoy the nightlife of New York City


:? I could use a good knight's sleep, that's for sure.
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