DrSclafani answers some questions

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

Postby SickButHappy » Tue Nov 02, 2010 4:57 am

Long time reader, first time writer ;) No words would describe how thankful I am for all this informations...

Had the procedure done in Albany last August. A real success, my life has changed. 3 months in a couple of days, that's a long placebo effect ;)

I'm from Canada. Cannot get the doppler under Dr.Z protocol done locally. Was lucky enough to have a local IR to perform a regular doppler. Was I right to think that it might not be the best follow-up scenario, but if there's something major (like a thrombosis), he would catch it?

Very kind man, felt reassure when I met him. He also suggested to avoid stents if possible and prefers multiple angioplasty. Can't wait not having to pay for it everytime though!! He was pleased to tell me my angioplasty had been nicely done ;)
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Postby NZer1 » Tue Nov 02, 2010 12:43 pm

Dr. S it appears that people with functioning valves in the blood return flow to the heart don't have symptoms that have been associated with MS.
It appears that people without non return valves to the brain accumulate symptoms associated with MS (over long periods of time).
It appears the body has found ways to return blood flow to the heart called collaterals which appear to overcome back pressure as the persons blood pressure is not raised.
Is it possible that the issue for PwMS is simply that the blood is not restricted from back flow to the brain. If there were working valves to stop the blood flowing back to the brain the malformations would not need to be angioed?
If surgeons have been able to replace heart valves is it possible that replacing or installing valves will be the resolution of back flow/reflux issues for PwMS.
Regards Nigel
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Postby Kleiner » Tue Nov 02, 2010 8:31 pm

drsclafani wrote:
Kleiner wrote:Dr. Sclafani,

I posted this under it's own topic but was wondering if you could offer any insight/interpretation into the results I received from my Ultrasound. I am having trouble finding anyone around my location that can put it into english for me. Here is the original post:

http://www.thisisms.com/ftopict-14377.html

Thanks in advance for your assistance.


LET ME TRY TO INTERPRET THIS INTO ENGLISH FOR YOU. MY TRANSLATION WILL FOLLOW PART OF THE REPORT IN ALLCAPS


REPORT


SUPINE STUDY:

Right IJV Cross-sectional area: 17.5mm^2
Left IJV Cross-sectional area: 30.5mm^2


IN THE LYING DOWN POSITION, THE LAB HAS MEASURED THE AREA OF THE CIRCUMFERENCE OF THE JUGULAR VEIN. AS YOU CAN SEE THE AREA OF THE LEFT IS ALMOST TWICE THAT OF THE RIGHT. HOWEVER COMPARISON OF RIGHT AND LEFT DO NOT HAVE SIGNIFICANCE. COMPARISON OF LYING DOWN AND SITTING UP IS IMPORTANT.

Prominent echogenic bands in the J1 segment of the left IJV
ECHOGENIC BANDS ARE SOUND REFLECTIONS OF TISSUE, IT COULD BE BANDS, ABNORMAL VALVES, SEPTATIONS, ETC THIS IS A B-MODE ABNORMALITY


Intermittent retrograde flow in the J2 segment of the left IJV
PERIODIC FLOW BACK UP TOWARD THE HEAD IN THE MIDDLE OF THE JUGULAR VEIN. THIS IS ABNORMAL. WE CALL IT REFLUX.

Normal antegrade flow in the right IJV, vertebral, and deep cerebral veins.
BUT THAT REVERSED FLOW ONLY OCCURS IN THE LEFT INTERNAL JUGULAR VEIN. THE OTHER MEASURED VEINS HAVE FLOW IN THE CORRECT DIRECTION. THIS ZAMBONI CRITERIA IS MET WHEN ANY OF THE VEINS FLOW BACKWARD. YOU DO NOT HAVE TO HAVE IT IN MORE THAN ONE OF THE VEINS.



UPRIGHT STUDY: USUALLY DONE SITTING UP, NOT STANDING.

Right IJV Cross-sectional area: 21.4mm^2 (change from supine= -3.9mm^2

THE CROSS SECTIONAL AREA DIFFERENCE BETWEEN UPRIGHT AND LYING DOWN ON THE RIGHT (ALSO KNOWN AS DELTA CSA). WHEN YOU SUBTRACT THE UPRIGHT FROM THE SUPINE AND GET A NEGATIVE NUMBER, THAT MEANS THAT THE CSA IS LARGER UPRIGHT THAN SUPINE. NORMALLY THE VEIN GETS SMALLER WHEN YOU ARE UPRIGHT BECAUSE THE FLOW NORMALLY GOES THROUGH THE VERTEBRAL VEIN WHEN SITTING AND STANDING.

Left IJV Cross-sectional area: 4.8mm^2(change from supine= +25.7mm^2
THIS IS WHAT IS NORMALLY SUPPOSED TO HAPPEN. THE VEIN IS BIGGER SUPINE THAN UPRIGHT.

Normal antegrade flow in the IJV and vertebral veins

ANTEGRADE FLOW MEANS THAT THE FLOW IN THE VEIN IS BACK TO THE HEART. tHIS IS THE DIRECTION VENOUS BLOOD IS SUPPOSED TO GO.

Retrograde flow in the deep cerebral veins
THE FLOW IN THE DEEP CEREBRAL VEINS IS GOING BACK TOWARD THE HEAD. THIS IS NOT WHAT IS SUPPOSED TO HAPPEN;. THIS IS ABNORMAL. THIS IS THE PART OF THE TEST THAT IS DONE WITH THE PROBE AGAINST THE TEMPLE OR NEAR THE EAR. IT IS CALLED TRANSCRANIAL DOPPLER.


INTERPRETATION:

1. Criteria for CCSVI 4/5 (qualifying factor for CCSVI is 2/5)
THE FIVE CRITERIA ARE
1. REVERSAL OF FLOW IN AN IJV OR VERTEBRAL VEIN (YOU HAVE THIS)
2. REVERSAL OF FLOW IN THE DEEP CEREBRAL VEINS (YOU HAVE THIS)
3. ABSENCE OF FLOW FOR PART OF THE VASCULAR CYCLE(YOU DO NOT HAVE THIS)
4. A NEGATIVE DELTA OF CSA (YOU HAVE THIS)
5. B-MODE ABNORMALITIES LIKE STENOSES, THICK VALVES, (YOU HAVE THIS)

I hope this helps[/b]



Dr. Scalfani,

Thank you so much for the clarification...covered everything perfectly and I was even able to help my aunt decifer her report. Can't thank you enough for all of your support!

Would it be possible for these issues to cause chest pains/pains in left arm. I have been having these intermittently for years, sometimes to the point where I feel like I am having a heart attack, but all tests on my heart have come back normal...just wondering if the poor blood flow would be causing any of this?

And one more question...sorry...you had mentioned about the transcranial doppler...I have always had headaches but lately I have been getting stronger ones that run from my left jaw up behind my left eye...I am good for at least 2 or 3 a day...again just wondering if the retrograde flow could be the cause of these headaches?

Once again, thanks for all of your help...you are a savior for those of us who can't find anyone to give us any answers or support.
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Postby drsclafani » Tue Nov 02, 2010 8:58 pm

SickButHappy wrote:Long time reader, first time writer ;) No words would describe how thankful I am for all this informations...

Had the procedure done in Albany last August. A real success, my life has changed. 3 months in a couple of days, that's a long placebo effect ;)

I'm from Canada. Cannot get the doppler under Dr.Z protocol done locally. Was lucky enough to have a local IR to perform a regular doppler. Was I right to think that it might not be the best follow-up scenario, but if there's something major (like a thrombosis), he would catch it?

Very kind man, felt reassure when I met him. He also suggested to avoid stents if possible and prefers multiple angioplasty. Can't wait not having to pay for it everytime though!! He was pleased to tell me my angioplasty had been nicely done ;)


yes a regular duplex scan of the jugular vein would tell you whether you had thrombosed.

However, we need a measure to assess whether the vein is restenosing BEFORE it would thrombose or result in a relapse or deterioration. So we have to get the people doing the ultrasound to learn how to do a CCSVI ultrasound. It isnt rocket science, just takes some effort to see a different way
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Postby drsclafani » Tue Nov 02, 2010 9:02 pm

NZer1 wrote:Dr. S it appears that people with functioning valves in the blood return flow to the heart don't have symptoms that have been associated with MS.
It appears that people without non return valves to the brain accumulate symptoms associated with MS (over long periods of time).
It appears the body has found ways to return blood flow to the heart called collaterals which appear to overcome back pressure as the persons blood pressure is not raised.
Is it possible that the issue for PwMS is simply that the blood is not restricted from back flow to the brain. If there were working valves to stop the blood flowing back to the brain the malformations would not need to be angioed?
If surgeons have been able to replace heart valves is it possible that replacing or installing valves will be the resolution of back flow/reflux issues for PwMS.
Regards Nigel


BINGO! almost

Firstly, the blood would not need to go through collaterals if there were no obstructions. Fifteen percent of normal patients dont have valves on autopsy. So the problem for most people is not the absence of valves. Its the outflow obstructions

Secondly The problem is that the jugular veins are not the heart. Half the time there is hardly any flow in them when they are normal. putting in foreign bodies like valves or stents might make them prone to clot off.

Same with surgery on those veins. sometimes they clot off.

The trick is to get them open. That what we are trying to do.
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Postby drsclafani » Tue Nov 02, 2010 9:05 pm

Kleiner wrote:
drsclafani wrote:
Kleiner wrote:Dr. Sclafani,

I posted this under it's own topic but was wondering if you could offer any insight/interpretation into the results I received from my Ultrasound. I am having trouble finding anyone around my location that can put it into english for me. Here is the original post:

http://www.thisisms.com/ftopict-14377.html

Thanks in advance for your assistance.


LET ME TRY TO INTERPRET THIS INTO ENGLISH FOR YOU. MY TRANSLATION WILL FOLLOW PART OF THE REPORT IN ALLCAPS


REPORT


SUPINE STUDY:

Right IJV Cross-sectional area: 17.5mm^2
Left IJV Cross-sectional area: 30.5mm^2


IN THE LYING DOWN POSITION, THE LAB HAS MEASURED THE AREA OF THE CIRCUMFERENCE OF THE JUGULAR VEIN. AS YOU CAN SEE THE AREA OF THE LEFT IS ALMOST TWICE THAT OF THE RIGHT. HOWEVER COMPARISON OF RIGHT AND LEFT DO NOT HAVE SIGNIFICANCE. COMPARISON OF LYING DOWN AND SITTING UP IS IMPORTANT.

Prominent echogenic bands in the J1 segment of the left IJV
ECHOGENIC BANDS ARE SOUND REFLECTIONS OF TISSUE, IT COULD BE BANDS, ABNORMAL VALVES, SEPTATIONS, ETC THIS IS A B-MODE ABNORMALITY


Intermittent retrograde flow in the J2 segment of the left IJV
PERIODIC FLOW BACK UP TOWARD THE HEAD IN THE MIDDLE OF THE JUGULAR VEIN. THIS IS ABNORMAL. WE CALL IT REFLUX.

Normal antegrade flow in the right IJV, vertebral, and deep cerebral veins.
BUT THAT REVERSED FLOW ONLY OCCURS IN THE LEFT INTERNAL JUGULAR VEIN. THE OTHER MEASURED VEINS HAVE FLOW IN THE CORRECT DIRECTION. THIS ZAMBONI CRITERIA IS MET WHEN ANY OF THE VEINS FLOW BACKWARD. YOU DO NOT HAVE TO HAVE IT IN MORE THAN ONE OF THE VEINS.



UPRIGHT STUDY: USUALLY DONE SITTING UP, NOT STANDING.

Right IJV Cross-sectional area: 21.4mm^2 (change from supine= -3.9mm^2

THE CROSS SECTIONAL AREA DIFFERENCE BETWEEN UPRIGHT AND LYING DOWN ON THE RIGHT (ALSO KNOWN AS DELTA CSA). WHEN YOU SUBTRACT THE UPRIGHT FROM THE SUPINE AND GET A NEGATIVE NUMBER, THAT MEANS THAT THE CSA IS LARGER UPRIGHT THAN SUPINE. NORMALLY THE VEIN GETS SMALLER WHEN YOU ARE UPRIGHT BECAUSE THE FLOW NORMALLY GOES THROUGH THE VERTEBRAL VEIN WHEN SITTING AND STANDING.

Left IJV Cross-sectional area: 4.8mm^2(change from supine= +25.7mm^2
THIS IS WHAT IS NORMALLY SUPPOSED TO HAPPEN. THE VEIN IS BIGGER SUPINE THAN UPRIGHT.

Normal antegrade flow in the IJV and vertebral veins

ANTEGRADE FLOW MEANS THAT THE FLOW IN THE VEIN IS BACK TO THE HEART. tHIS IS THE DIRECTION VENOUS BLOOD IS SUPPOSED TO GO.

Retrograde flow in the deep cerebral veins
THE FLOW IN THE DEEP CEREBRAL VEINS IS GOING BACK TOWARD THE HEAD. THIS IS NOT WHAT IS SUPPOSED TO HAPPEN;. THIS IS ABNORMAL. THIS IS THE PART OF THE TEST THAT IS DONE WITH THE PROBE AGAINST THE TEMPLE OR NEAR THE EAR. IT IS CALLED TRANSCRANIAL DOPPLER.


INTERPRETATION:

1. Criteria for CCSVI 4/5 (qualifying factor for CCSVI is 2/5)
THE FIVE CRITERIA ARE
1. REVERSAL OF FLOW IN AN IJV OR VERTEBRAL VEIN (YOU HAVE THIS)
2. REVERSAL OF FLOW IN THE DEEP CEREBRAL VEINS (YOU HAVE THIS)
3. ABSENCE OF FLOW FOR PART OF THE VASCULAR CYCLE(YOU DO NOT HAVE THIS)
4. A NEGATIVE DELTA OF CSA (YOU HAVE THIS)
5. B-MODE ABNORMALITIES LIKE STENOSES, THICK VALVES, (YOU HAVE THIS)

I hope this helps[/b]



Dr. Scalfani,

Thank you so much for the clarification...covered everything perfectly and I was even able to help my aunt decifer her report. Can't thank you enough for all of your support!

Would it be possible for these issues to cause chest pains/pains in left arm. I have been having these intermittently for years, sometimes to the point where I feel like I am having a heart attack, but all tests on my heart have come back normal...just wondering if the poor blood flow would be causing any of this?

And one more question...sorry...you had mentioned about the transcranial doppler...I have always had headaches but lately I have been getting stronger ones that run from my left jaw up behind my left eye...I am good for at least 2 or 3 a day...again just wondering if the retrograde flow could be the cause of these headaches?

Once again, thanks for all of your help...you are a savior for those of us who can't find anyone to give us any answers or support.



I do not think that pain in your arm and chest would result from the venous problem, except if the ccsvi caused multiple sclerosis pain symptoms that radiated into your arm or if ccsvi caused multiple headaches.
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Postby drsclafani » Tue Nov 02, 2010 9:19 pm

NZer1 wrote:Dr, Joan Beal has been posting about blood testing lately can you talk to us about what we need to be aware of when choosing a treatment provider and what we need to be having done for the follow up period/time?
Thanks Nigel.

Quote;http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/please-read/454425162210
Patients who have angioplasty need a very specific blood thinning regimen tailored to them, and this needs to be followed by a doctor who can test INR and PT (coagulation numbers) Many people have angioplasty and have no idea they have hypercoagulation before being treated....this is a terrible problem.


Sounds like Joan is speaking about coumadin, also known as warfarin, commonly also used as a rat poison. It is potent and requires periodic blood testing to make sure that the dose is proper but not too high. The PT and INR are the testing done. The drug itself is not expensive, but the testing increases the cost. I would think Joan is talking about it because her husband has stents and these require longer term anticoagulation to reduce the risk of thrombosis of the stent. 6-12 months of treatment is often given.

Other doctors, such as myself, who do not use stents and treat mostly with angioplasty, treat shorter term to allow healing of he angioplasty stretching while reducing the shorter term risk of thrombosis. Some of us use antiplatelet drugs such as aspirin and or plavix also known as clopidogrel. There are inhibitors of platelet stickiness and aggregation that can be the beginning of a blood clot. Treatment is usually for about three months. There arent very practical tests to follow this effect.

I myself, have been treating with fondaparinux, also known as Arixtra. It is a thrombus inhibitor similar to heparin but a safer and more practical medication. It is administered once per day in the abdominal fat, much like copaxone. I give it for 20 doses, the first one before the procedure. There are no practical tests that are needed during this short interval. It is expensive, but the safety margin is worth the cost. the risk of bleeding is less than heparin or lovenox.
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Postby drsclafani » Tue Nov 02, 2010 9:22 pm

North52 wrote:
drsclafani wrote:
Cece wrote:
mila77 wrote:I left the operating room with slightly numb right hand and it stayed like that for a long time.

Dr. Sclafani, this is something I've noticed in a handful of accounts. A patient experiences numbness of the hand or arm that begins during the procedure and persists. It's been in at least three reports, I could find them with a good search. I suspect it'll show up in the registry data, but with what we have to go on now, what could cause this?

It must be vascular, not neurological, because of the timing? MS symptoms come and go, it could be a coincidence, but there is the similarity in different reports: new symptom, numbness in hand/arm, begins immediately in the OR, and persists.


I wonder whether it could be due to the stretching of the tissues around the veins in the neck. perhaps the nerves are being stretched. Some of those nerves go to the hand and arm. If the angioplasty is high up, then the accessory spinal nerve could be stretched and this could lead to weakness of the shoulder. Other nerves that could be stretched include the vagus nerve and if high enough, that could cause hoarseness too.


Dear Dr. Sclafani,


I was one of those patients that developed numbness of the fingertips of both hands immediately following the procedure. These symptoms developed and persisted despite clear improvements with my gait following balloon angioplasty of my azygous. The numb fingers were a completely new symptom for me. I had spent lots of time wondering why this happened and would like to propose what I think is a explanation.

With balloon angioplasty of a major obstruction in one of the venous outflow routes from the CNS, the obstruction is relieved on that side and there is more flow down that once obstructed vein. This increased flow on the ballooned side must somehow be compensated for by decreased blood flow on the other the other side (or other outflow route). I think this can be supported by hemodynamic principals. It is this decreased flow on the other side that I believe may cause these new or aggravated symptoms. I suspect this type of problem is made worse if there is residual or unrecognized stenosis on the "unaffected side". This was my situation. I had my azygous opened up but ballooning of the 100% occlusion of my brachiocephalic vein was not even attempted and left as it was.

North


The composite blood flow is not going to change much by angioplasty. Some reduction in the resistance to outflow might actually improvef the inflow actually. i cannot explain what these symptoms are about.
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Re: Azygos

Postby drsclafani » Tue Nov 02, 2010 9:33 pm


It is my impression that the IJV blockages are the low hanging fruit of ccsvi treatment. Dr Sclafani, can you comment more on the azygos issue and its diagnosis, treatment and implications. I have heard some claim that azygos issues are more common in those with lower body mobility problems.


they are easier to recognize because we have more experience looking at jugular veins. the azygos is a sort of stranger. The images are not as good, the findings are often subtle. Some cannot be recognized by venography, ultrasound, IVUS, or MR venography. They are very enigmatic.

that vein is also in the middle of the chest. so if it ruptures during angioplasty, i would be very unhappy. I cannot put my hand on it and apply mild pressure. its too deep. given that patients are anticoagulated, i worry and do not yet want to just dilate it because it is there.

Are patterns being identified correlating blockages/disrupted flow with any symptoms. Maybe ijv with fatigue or mental fog? azygos? what about sigmoid sinus? Is there a connection with any blockages and lower extremities swelling--many experience feet or ankles swelling? It could be a totally unrelated issue.




there are patterns of vein problems related to type of ms. PPMS was shown to have a higher incidence of azygos abnormalites by the zamboni group.
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Postby Cece » Tue Nov 02, 2010 10:15 pm

drsclafani wrote:
Kleiner wrote:Would it be possible for these issues to cause chest pains/pains in left arm. I have been having these intermittently for years, sometimes to the point where I feel like I am having a heart attack, but all tests on my heart have come back normal...just wondering if the poor blood flow would be causing any of this?.


I do not think that pain in your arm and chest would result from the venous problem, except if the ccsvi caused multiple sclerosis pain symptoms that radiated into your arm or if ccsvi caused multiple headaches.

Kleiner, I was reminded of this when I read your question:
http://www.thisisms.com/ftopicp-114889.html#114889
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Postby marcstck » Tue Nov 02, 2010 11:11 pm

Hi Dr. Sclafani,

As my "atypical" case illustrates (a muscle bundle external to the vein pinching it quite significantly, but apparently causing no blood flow turbulence) , not every stenosis or blockage results in blood flow reflux, which is actually at the heart of the CCSVI hypothesis. Venous stenosis is merely the agent that causes this reflux, so the stenosis itself, absent blood flow reflux, is hypothetically not the problem.

Since this is the case, isn't the aggressive seeking out of any stenosis (such as Dr. Sinan's method of slightly inflating the azygos looking for any signs of stenosis) and then treating it overkill? Shouldn't blood flow disruption and reflux, rather than simply the presence of stenosis, be the arbiter of whether or not to treat?

It seems to me that many IR's are ballooning and even stenting just about any sign of stenosis they come across during a catheter venogram. I understand that blood flow problems are detected when the dye is injected into the vein, but, at least from some patient accounts, this doesn't seem to be the criteria being used to determine whether or not to treat.

All over the Internet, it seems that the CCSVI argument has gone stenosis happy, concentrating on narrowed veins rather than the impact that they have on blood flow, which in some cases is actually negligible.

To my medically untrained mind, it would seem that a stenosis would need to be rather severe to cause blood to actually reverse course in the vein. In my case, the narrowing of the vein is quite severe, yet Dr. Zamboni thinks no treatment is necessary. But we consistently hear of blockages of 50% and sometimes less, being treated. Is this being overaggressive?

Am I way off the mark here?
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Postby NZer1 » Tue Nov 02, 2010 11:51 pm

Hi Marc I am in agreement with you on this. Although people have malformations and stenosis it is the reflux that causes the issues, and it is over time that the severity creates the 'disease'.
Dr S your reply to my question probably doesn't cover the spectrum of symptoms that PwMS have and other diseases that are being linked to these blood flow issues. There seems to be more grey areas to consider, for instance the azygous issues and the 50 plus subgroups of CCSVI that Dr Haacke speaks of.
I think that once the collaterals have established and taken the flow away the redirection and size challenges the flow and causes the reflux. If the collateral was stream lined for flow of low pressure/gravity flows the reflux probably wouldn't happen. If the one way valve was high up in the return flow system it would cater for all and any stenosis in the system.
It seems the valves were there for a good reason in the first place to only improve flow will not stop reflux, which will occur to some degree in normal life, caused by movement of the neck as one example.
The symptoms from reflux seem to me to be the same as MS symptoms and the symptoms that are found in diseases involving blood flow issues from the brain of patients that haven't been dx'ed as PwMS are the same.

Dr S why would the valves be in the veins draining the brain?
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Postby buggs » Wed Nov 03, 2010 1:16 am

I am sorry in advance for my ignorance, I was wondering where is Dr. Sclafani from? Do you do procedures and are you able to give me some advice??
I have a Dopplar Ultrasound that says my LIJ does not close upon me sitting up. What does that mean every one elses seems to be stuck closed???
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Postby Cece » Wed Nov 03, 2010 1:31 am

Off the marc?

drsclafani wrote:I do not think that reflux up the jugular vein is really the pathophysiology of this entity. Dr. Zamboni suggests that it the obstruction that is the real problem. This leading to reversal of flow through small vessels not designed to take that kind of flow. I do not think the problem is pressure or reverse pressure. it is flow

http://www.thisisms.com/ftopicp-98309.html#98309

Not sure I understand that, but it seemed relevant. Does a vein pinched by a muscle still grow collaterals?
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Postby spiff1970 » Wed Nov 03, 2010 8:50 am

Hi,

Does anyone have any information about the rate of thrombosis following the placement of stents in the jugulars? I heard that there has been many cases but I've only seen a couple of them reported here. More evidence, please.

best,

Spiff
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