DrSclafani answers some questions

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

Postby selkie » Sun Aug 08, 2010 3:07 pm

PCakes wrote:Hello Dr Sclafani,

I am wondering if your response to the practice of tieing off jugulars as cancer treament is available?

Yesterday, Alberta Health Services issued this statement http://www.albertahealthservices.ca/fea ... -sheet.pdf

with the following comment included..
In fact, neck surgeons commonly tie off one or
both jugular veins during surgery to treat head and neck cancer; this has no medical consequence because the venous drainage of the head and brain is designed to have alternative
routes of drainage.


The media has picked this up and a learned response would sure help.

Thank you,
pc


This is a good question, but I'm wondering if it's true? A man I know in Ireland who wanted Liberation was told "NO" because people with cancer can have their jugulars removed and survive, as the body will compensate with bypass veins.

But the question is how long do they survive and with what quality of life?

My question would be, is it really true you can tie off jugulars without consequence? Isn't that what a stenosis is already doing? And do all people have the potential of their bodies creating an adequate bypass system?

I heard the survival rate for removal of jugulars was something like 5 years! In the case of cancer, that may be the only option, but Liberation sounds like a better option for ccsvi - doesn't it? Or am I missing something?

I too, would be interested if Dr. Sclafani could comment on this! Thnx for asking the ??
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Postby Cece » Sun Aug 08, 2010 4:23 pm

drsclafani wrote:I have been wrestling with a momentous personal decision all week.

I have steppred down as chief of radiology to dedicate my attention on ccsvi. I will ansswer questions when I return to new york

I am very happy to read this. I hope you are comfortable with your decision and that it will give you the most career satisfaction yet, plus the opportunity to make a difference.

We ain't seen nothin yet.... :D
"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 linsand » Sun Aug 08, 2010 5:02 pm

Dr Scalfani, I was present at the ccsvi fundraiser in Detroit yesterday Aug 7th. It was so good to hear from a professional who knows the facts as they are.

Thank you so much for your commitment to the ccsvi cause, we are stronger for that.
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Postby Cece » Sun Aug 08, 2010 5:03 pm

selkie wrote:My question would be, is it really true you can tie off jugulars without consequence?

Here is what he said about some of this, back on May 5th:
drsclafani wrote:
NZer1 wrote:***************************
The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient?
***************************
This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.


If it is true that the outflow obstructions of the cerebrospinal blood flow is congenital and related to genetics, one can surmise that these problems are present at birth.

Since MS usually manifests around age 30, that means that it took thirty years to develop the associated symptom and sign complex called multiple sclerosis.

if one has both jugular veins removed, a rather extensive bilateral neck dissection, one can be sure that the situation is quite dire.

Survival for 30 years would be highly unlikely.

Therefore developing MS is unlikely in this situation.

Perhaps the vascular surgeon does not understand the nature of CCSVI and thinks that jugular veins are expendible.

we know better dont we 8O
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Postby Lyon » Sun Aug 08, 2010 5:26 pm

.
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WOWERS

Postby copacabana » Sun Aug 08, 2010 6:12 pm

i might be a little late but just found out about this awesome news!!!!

Thank You Dr.Sclafani....a true doctor who cares about getting things done and doing no harm - god bless and thank you for being the best at what you do.... :!: we have so many great doctors standing behind us now...ain't no stopping us now or them (dr.'s) :D
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Postby drsclafani » Sun Aug 08, 2010 6:12 pm

Cece wrote:
selkie wrote:My question would be, is it really true you can tie off jugulars without consequence?

Here is what he said about some of this, back on May 5th:
drsclafani wrote:
NZer1 wrote:***************************
The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient?
***************************
This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.


If it is true that the outflow obstructions of the cerebrospinal blood flow is congenital and related to genetics, one can surmise that these problems are present at birth.

Since MS usually manifests around age 30, that means that it took thirty years to develop the associated symptom and sign complex called multiple sclerosis.

if one has both jugular veins removed, a rather extensive bilateral neck dissection, one can be sure that the situation is quite dire.

Survival for 30 years would be highly unlikely.

Therefore developing MS is unlikely in this situation.

Perhaps the vascular surgeon does not understand the nature of CCSVI and thinks that jugular veins are expendible.

we know better dont we 8O


i find it extraordinary that the naysayers can editorialize whatever they want in a biased manner and have it published rapidly.

It is true that there are papers that state that you can tie off (ligate) both internal jugular veins during radical neck surgery for cancer without developing permanent neurological consequences. (of course, these authors do NOT mention Multiple Sclerosis!)

This does not mean that surgeons ligate both jugular veins with impunity or that all surgeons do it.

Many ligate one and then come back another day to ligate the other because of the concerns about significant complications.in one paper, patients who had simultaneous one-stage bilateral neck dissection, often with jugular vein ligation, had a 10% mortality and an 11% major complication rate. But when sparing of the jugular vein was successful or if the procedure was done in two stages, mortality was only 3%. I guess it does matter.

Several authors have reported severe complications of unilateral or bilateral jugular vein ligation. these include bilateral and unilateral blindness, thought to be caused by intraorbital hemorrhages related to the venous hypertension. Other consequences of jugular vein ligation reported in the literature include intraorbital hemorrhage, pseudotumor cerebri, intracranial hemorrhages, double vision due to cranial nerve compressions, dural sinus thrombosis,

That being said, bringing this surgery into the discussion of MS insults the intelligence of patients and doctors alike.

i am sorry you are troubled by this nonsense distraction
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Postby drbart » Sun Aug 08, 2010 8:51 pm

drsclafani wrote:I have stepped down as chief of radiology to dedicate my attention on ccsvi. I will ansswer questions when I return to new york


Wow, congrats and best wishes in your new endeavors!

"The best way to predict the future is to invent it."
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Re: Pressure and depth

Postby NHE » Sun Aug 08, 2010 10:29 pm

Hi Logic,
Welcome to ThisIsMS.

logic wrote:
drsclafani wrote:
JohnJoseph wrote:Dear Dr S,
Many thanks for The Symposium a week ago!

Another technical question, I don't think it has been much discussed so far:
- What pressure is being applied to the balloons - are there different cathegories of baloons based on pressure?


pressures generated are between 8 and 30 atmospheres. That is the equivalent of the pressure of the ocean on top of you 1000 feet under the surface. It is a lot of pressure. Fortunately it is contained within the balloon. "



Hi Dr. Sclafani. I have been studying scuba for three years. I am now 12 years old. My mom is bluesky63 and I am very glad that you are helping her. My mom showed me this after her venogram.

I hope you won't mind if I point out that your example of pressure was not quite accurate because in that depth the perception would be more like density squeezing you more tightly, not like the weight of the ocean, plus the pressure would crush you. It's not a solid object that would press down on you. It's liquid but it has less oxygen at that depth, which makes it more solid, but still not solid, and the farther you descend, the greater the density. Do you have a different and more realistic example that I could understand?


The information that Dr. Sclafani posted is correct. Pressure increases with depth due to the weight of the water above. This effect is not due to density which varies very little with depth. Water is not very compressible. I should note that density does change with temperature and salinity which is how pycnoclines form (abrupt changes in the density of water).

    Image


As an example of pressure increasing with depth, consider the following case. Assume that seawater has a density of about 1.028 g/mL. A one inch square column of water 10 meters high would weigh about 14.62 pounds which is close to one atmosphere (14.7 psi). This force would be applied to every square inch of a surface at depth whether it's a person or a submarine. The deeper one goes, the more water above and the higher the pressure. The pressure would be applied from all directions, not just from above. In comparison to the minimal change with density seen in the above graph, the pressure at 5000 meters would be 7365 psi :!:

NHE
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Postby selkie » Mon Aug 09, 2010 12:10 am

Dr. Sclafani, words cannot thank you enough for your caring and commitment to PwMS. Best wishes and take care of yourself.

aloha, selkie
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Your Decision

Postby andisue50 » Mon Aug 09, 2010 12:22 am

Wow - my first time here and I immediately saw your announcement. Can only wish you all the best and hope that your decision, while I'm sure involves much personal sacrifice, advances the acceptance of treating CCSVI. Bless you Dr. S.
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Postby Zeureka » Mon Aug 09, 2010 12:56 am

GRAZIE !!! :D :D :D
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Postby Squeakycat » Mon Aug 09, 2010 1:12 am

drsclafani wrote:i find it extraordinary that the naysayers can editorialize whatever they want in a biased manner and have it published rapidly.


The naysayers in this case are the neurologists working with the Alberta Health Services, making this part of an official government statement on CCSVI.

This official government document makes it clear that neurologists are the experts with knowledge of blood-brain issues and if they don't think there is any merit to CCSVI, neither should you.

These cells do not get stuck in the vessels due to blocked flow; instead, they become attached to the vessels because molecules called “integrins” on the inflammatory cells exactly match molecules on the vessel wall (“integrin receptors”) like a key in a lock. Once bound to the vessel the inflammatory cells can then pass into the brain.

In fact, there is a very specific MS therapy (a drug called natalizumab) that blocks the ability of integrins to attach to the vessel wall. Blocking the attachment of inflammatory cells to the vessel wall almost completely stops inflammatory cells from crossing into the brain and is very effective in stabilizing “relapsing-remitting” cases of MS. When this inflammatory process occurs however, proteins are released into the circulation and are carried away by the veins draining the brain.

Therefore, current knowledge of MS makes it more likely that constant drainage of inflammatory proteins through the major veins of the brain could cause the venous changes reported to occur frequently in MS.


Why do most neurologists doubt that MS could be caused by blocked or sluggish veins?

Generally speaking, and based on current evidence, neurologists and neuroscientists who are up-to-date about the biology of MS and vascular diseases of the brain do not believe that CCSVI will be proven to be a cause of MS. Nor do these experts believe there is likely to be any merit in venous angioplasty for CCSVI. They know that brain injury in MS is caused by the immune system and they are also familiar with vascular diseases that affect the brain (most commonly stroke and conditions such as cerebral venous sinus thrombosis where the veins that drain the brain are blocked).

Thus, neurologists care for people with MS and for people with neurological diseases caused or related to abnormal blood vessels, so they have the expertise to understand the association between the brain and its blood supply and venous drainage, and they are aware of the consequences of blocked veins within the brain and/or the neck. They also know that MS or an MS-like condition has never been shown to be a result of blocked or sluggish veins.
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Re: Dr. Sclafani

Postby NHE » Mon Aug 09, 2010 1:26 am

Dr. Sclafani wrote:I have been wrestling with a momentous personal decision all week.

I have steppred down as chief of radiology to dedicate my attention on ccsvi. I will ansswer questions when I return to new york.


Dr. Sclafani's Bio wrote:Thus, he considers the hospitals his second home and its patients his family.


Indeed you do. Thank you! I am left without words to express my gratitude.

NHE
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Re: Blood Brain Barrier Permeability

Postby NHE » Mon Aug 09, 2010 2:09 am

Squeakycat wrote:The naysayers in this case are the neurologists working with the Alberta Health Services, making this part of an official government statement on CCSVI.

This official government document makes it clear that neurologists are the experts with knowledge of blood-brain issues and if they don't think there is any merit to CCSVI, neither should you.

These cells do not get stuck in the vessels due to blocked flow; instead, they become attached to the vessels because molecules called “integrins” on the inflammatory cells exactly match molecules on the vessel wall (“integrin receptors”) like a key in a lock. Once bound to the vessel the inflammatory cells can then pass into the brain.

In fact, there is a very specific MS therapy (a drug called natalizumab) that blocks the ability of integrins to attach to the vessel wall. Blocking the attachment of inflammatory cells to the vessel wall almost completely stops inflammatory cells from crossing into the brain and is very effective in stabilizing “relapsing-remitting” cases of MS. When this inflammatory process occurs however, proteins are released into the circulation and are carried away by the veins draining the brain.

Therefore, current knowledge of MS makes it more likely that constant drainage of inflammatory proteins through the major veins of the brain could cause the venous changes reported to occur frequently in MS.


Why do most neurologists doubt that MS could be caused by blocked or sluggish veins?

Generally speaking, and based on current evidence, neurologists and neuroscientists who are up-to-date about the biology of MS and vascular diseases of the brain do not believe that CCSVI will be proven to be a cause of MS. Nor do these experts believe there is likely to be any merit in venous angioplasty for CCSVI. They know that brain injury in MS is caused by the immune system and they are also familiar with vascular diseases that affect the brain (most commonly stroke and conditions such as cerebral venous sinus thrombosis where the veins that drain the brain are blocked).

Thus, neurologists care for people with MS and for people with neurological diseases caused or related to abnormal blood vessels, so they have the expertise to understand the association between the brain and its blood supply and venous drainage, and they are aware of the consequences of blocked veins within the brain and/or the neck. They also know that MS or an MS-like condition has never been shown to be a result of blocked or sluggish veins.


I believe that Dr. Simka has already addressed this issue.

Note that I could not find his orginal letter which I discuss below, but this abstract reviews similar material.

NHE wrote:Simka's letter in a nutshell... Endothelial cells are the cells that line the blood vessels. In the brain, the endothelial cells make up the blood brain barrier. When blood flows past the endothelial cells, the cells experience shear stress. In response to this stress, the cells upregulate the proteins that make the connections between them stronger, i.e., the statement about tight junctions. Stronger tight junctions help the blood brain barrier limit what can pass between the endothelial cells from the blood to the brain, e.g., the white blood cells of the immune system. Simka's point appeared to be that with reduced blood flow seen in CCSVI in MS patients, the endothelial cells will not experience as much shear stress and will therefore have weaker tight junctions between them leading to increased permeability of the blood brain barrier and that this change in the blood brain barrier may be a contributing factor to the development of MS. In addition, Simka noted that low shear stress upregulates the protein, ICAM-1, that's used by leukocytes to cross the blood brain barrier. This is like a double edged sword against the blood brain barrier, i.e., not only is it more permeable but the adhesion molecules needed by the immune system cells to cross the blood brain barrier are more abundant (that's like opening all the windows in your house just a bit and then putting signs out for the burglars). Simka also proposed that he thought that surgical intervention was a good idea.


NHE


Edit: Here is a link to the Brenner and Simka letters to JNNP regarding Zamboni's paper.
http://jnnp.bmj.com/content/80/4/392/reply#jnnp_el_4236
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