This Is MS Multiple Sclerosis Knowledge & Support Community

EJC wrote:So the emissary veins have over developed to compensate in some way for the blockage in the jugulars but these veins still don't have enough capacity to compensate completely?

So that is the reflux and a symptom of that is headaches?

It's believed that the only time when the emissary veins can grow in size is prenatally, because they actually travel through channels through the skull itself. The emissary veins are present prenatally and the skull forms around them at some point during development. This is fascinating, in my opinion, and it supports the notion that CCSVI blockages can be congenital in origin, if the overdevelopment of the emissary veins is a compensation for the blockage in the IJVs that is present prenatally. I think you are correct that even if the emissary veins overdevelop, they do not get as big as an internal jugular vein itself, so it does not solve the problem but at least gets some of the flow out of the cranium.

The reflux is the flow taking alternate routes because the outflow through internal jugular veins is obstructed. The headache is a symptom of venous congestion in the emissary veins and/or neck muscle veins that are one of those alternate routes.

This is all my best understanding as a layman. Ok, I can see where this is complicated, especially because not all of this is laid out in every post, but was at some point in the last two years. Dr. Schelling had thoughts about the emissary veins being integral to the development of brain lesions, because if we have these larger emissary veins leading out, the flow can reverse under pressure such as coughing, and the emissary vein turns into an inward route rather than an outward route, I think? I do not have a full grasp of Dr. Schelling's ideas.

EJC wrote:^ So, theoretically at least, it's not beyond the realms of possibility that CCSVI and skeletal misalignments/injury/malformations at least react or have a cause and effect relationship.

You've just described a similar thought process to mine - in so much as it's logical to straighten up known physical issues (alignments etc) before addressing vascular issues. On my part this is based on nothing more than "Man logic" rather than anything medical whatsoever.

It's also logical that "MS" is not one thing, how would you explain the huge disparity in symptoms? How would you explain recovery from symptoms after CCSVI for some patients and not others or indeed the vast range of recovery differences and regression rates.

So this gives you potentially three categories of patient with two possible symptoms:-

1 CCSVI only
2 Misalginments only
3 CCSVI + misalginments.

There's scope there for a massive range in symptoms between the three permutations.

lets add some others:
4. ccsvi and MS
4. MS+malalignments
5 CCSVI +MS+ malalignments

However, please recognize that i am not making judgments about malalignments

Cece wrote:
If the jugular blockages are opened, then the flow travels smoothly out the jugulars and there is no diverting to smaller blood vessels and the veins of the neck muscles can do a better job of draining the neck muscles. I don't understand exactly how venous congestion of the neck muscles would lead to headaches but it would mean slow-moving flow and dilated veins and capillaries and reduced oxygen available for the veins themselves and the neck muscles.

A muscle suffering from chronic venous congestion is not oxygenated, it's swollen and short, most of the time it's in spasm. It can't function well. This absence of normal function leads to wrong posture and lack of complete movement of the head, the back, etc (it depends on what muscles are involved). These all cause pain. Then of course misalignment of the spine follows.

drsclafani wrote:

EJC wrote:^ So, theoretically at least, it's not beyond the realms of possibility that CCSVI and skeletal misalignments/injury/malformations at least react or have a cause and effect relationship.

You've just described a similar thought process to mine - in so much as it's logical to straighten up known physical issues (alignments etc) before addressing vascular issues. On my part this is based on nothing more than "Man logic" rather than anything medical whatsoever.

It's also logical that "MS" is not one thing, how would you explain the huge disparity in symptoms? How would you explain recovery from symptoms after CCSVI for some patients and not others or indeed the vast range of recovery differences and regression rates.

So this gives you potentially three categories of patient with two possible symptoms:-

1 CCSVI only
2 Misalginments only
3 CCSVI + misalginments.

There's scope there for a massive range in symptoms between the three permutations.

lets add some others:
4. ccsvi and MS
4. MS+malalignments
5 CCSVI +MS+ malalignments

However, please recognize that i am not making judgments about malalignments

Very true, how many items could that list grow to?

We should get a "thanks" button added to the forum, it would be a lot easier than replying each time.

drsclafani wrote:

dlynn wrote:EJC,
I found your question #3 to be curious. Never having been diagnosed with TMJ,(I have seen a specialist) I seemed to have symptoms.
My jaw had been locked for approx. 4yrs. causing (right side) inner ear , jaw, and neck pain. I had embolization done and the following day, my jaw unclenched and there is no more pain. I did have CCSVI procedures, but they never improved my jaw. I don't know if it's a coincidence, but it is interesting.
I believe changes/improvements should be noted.

dlynn
i think this should be clarified because the reference to embolization many not be familiar to many readers.

I'm really interested in a broader explanation of this though ^

Hello again,
I think that there needs to be caution with some ideas about the vein flows and back flows.

1. The expansion of a vein 'could' be from reflux as well as the possibility of it growing from an inability to carry the flow.

2. The idea that blood and CSF has equal pressure around the brain within the skull is incorrect. In different compartments there is different resistances for many reasons, some on purpose and others are failings, so both the pressure and the flow is varied depending on the region of the brain.

3. The endothelial layer has weak spots in the Ventricles that are inbuilt and at risk as weak spots for reflux/back flows. So the Endothelial layer is of vital importance hence diet and exercise have shown dramatic changes to symptoms.

4. The effect of viruses and bacteria on the Vascular System is little known as yet, and the effect of a leaking BBB is a huge issue for diseases such as Lyme and CPn being able to access the brain through BBB leakage. MS and Lyme or MS and CPn or MS and Lyme plus CPn are becoming quite commonly dx-ed now that people are looking beyond CCSVI as some of the cause to the diseases.

5. MS is a Jigsaw with many pieces and there are some missing under something or behind some things!

1 CCSVI only
2 Misalginments only
3 CCSVI + misalginments.

lets add some others:
4. ccsvi and MS
4. MS+malalignments
5 CCSVI +MS+ malalignments

6. Viruses and Bacteria + Misalignments + Leaky Endothelial Layer and BBB + CCSVI + diet and exercise issues = degenerative diseases eg MS, Parkinson's, Alzheimer's, Chrons, and so on

Gards,
Nigel

pelopidas wrote:

Cece wrote:
If the jugular blockages are opened, then the flow travels smoothly out the jugulars and there is no diverting to smaller blood vessels and the veins of the neck muscles can do a better job of draining the neck muscles. I don't understand exactly how venous congestion of the neck muscles would lead to headaches but it would mean slow-moving flow and dilated veins and capillaries and reduced oxygen available for the veins themselves and the neck muscles.

A muscle suffering from chronic venous congestion is not oxygenated, it's swollen and short, most of the time it's in spasm. It can't function well. This absence of normal function leads to wrong posture and lack of complete movement of the head, the back, etc (it depends on what muscles are involved). These all cause pain. Then of course misalignment of the spine follows.

Hi pelopidas, very interesting.

It seems like you've given a possible cause of misalignment of the Atlas (C1): Upper cervical spinal trauma caused by CCSVI.

For 'emissary venous congestion' cases of CCSVI, if there is a misaligned Atlas, relieving the CCSVI could possibly allow for a "specific upper cervical" chiropractic adjustment, such as AO, to hold for as long as the CCSVI is relieved, yes?

If this CCSVI is not relieved, the patient would then continue to suffer from the negative effects of both CCSVI and a misaligned Atlas, both of which are theorized to cause demyelinating brain and cord lesions. Recent upright MRI studies show that CSF flows that are interrupted by a misaligned Atlas can violently reflux against the brain. Also, a misaligned Atlas can impinge veins, arteries, and nerves.

In my strong opinion, for this special case of CCSVI, the IR should, for the patient's sake, go out of his or her comfort zone and suggest to the patient that a "specific upper cervical" chiro consultation be made to find out if the patient's Atlas is, indeed, misaligned. Collaboration between the two doctors, for the patient's sake, really should become the standard in these cases.

Comments? Dr. Sclafani?

HappyPoet wrote:

pelopidas wrote:

Cece wrote:
If the jugular blockages are opened, then the flow travels smoothly out the jugulars and there is no diverting to smaller blood vessels and the veins of the neck muscles can do a better job of draining the neck muscles. I don't understand exactly how venous congestion of the neck muscles would lead to headaches but it would mean slow-moving flow and dilated veins and capillaries and reduced oxygen available for the veins themselves and the neck muscles.

A muscle suffering from chronic venous congestion is not oxygenated, it's swollen and short, most of the time it's in spasm. It can't function well. This absence of normal function leads to wrong posture and lack of complete movement of the head, the back, etc (it depends on what muscles are involved). These all cause pain. Then of course misalignment of the spine follows.

Hi pelopidas, very interesting.

It seems like you've given a possible cause of misalignment of the Atlas (C1): Upper cervical spinal trauma caused by CCSVI.

For 'emissary venous congestion' cases of CCSVI, if there is a misaligned Atlas, relieving the CCSVI could possibly allow for a "specific upper cervical" chiropractic adjustment, such as AO, to hold for as long as the CCSVI is relieved, yes?

If this CCSVI is not relieved, the patient would then continue to suffer from the negative effects of both CCSVI and a misaligned Atlas, both of which are theorized to cause demyelinating brain and cord lesions. Recent upright MRI studies show that CSF flows that are interrupted by a misaligned Atlas can violently reflux against the brain. Also, a misaligned Atlas can impinge veins, arteries, and nerves.

In my strong opinion, for this special case of CCSVI, the IR should, for the patient's sake, go out of his or her comfort zone and suggest to the patient that a "specific upper cervical" chiro consultation be made to find out if the patient's Atlas is, indeed, misaligned. Collaboration between the two doctors, for the patient's sake, really should become the standard in these cases.

Comments? Dr. Sclafani?

Happy POet

At the outset, I want to say that I think it would be irresponsible at best for a physician to go outside his or her comfort zone, ie. knowledge and experiential base, to make recommendations about which he or she is not familiar or expert. I know many patients find this disappointing but this is not part of my training or practice. I would not make specific recommendations about how to treat a fracture, which medications and doses of DMD to use, how best to dye one's hair. This is neither a refutation nor a affirmation. I do not particularly think it has been helpful for neurologists to be proclaiming opinions about venous disease either. In this respect i keep my rather limited opinions about upper cervical to myself.

I use the term trauma in a more limited basis. Firstly, the number of patients who have , during a long life , sustained some trauma to the neck is tremendous. Who hasnt had some car accident, fallen on the head as a baby, violently sneezed, etc? More violent traumas are indeed quite significant. But to call venous congestion a cause of upper cervical trauma just doesnt reach my level of the definition of trauma. In other words, we really need to look at this from a very controlled view. Is the incidence of upper cervical trauma any different among PwMS and patients without neurological disease?

I hope you hear what i am saying not as nihilism or negativity, but as being true to my own knowledge and understanding. I do think that poor CSF drainage is a big part of this story. I will continue to work on that from the venous side because that is my expertise.

EJC wrote:

drsclafani wrote:

dlynn wrote:EJC,
I found your question #3 to be curious. Never having been diagnosed with TMJ,(I have seen a specialist) I seemed to have symptoms.
My jaw had been locked for approx. 4yrs. causing (right side) inner ear , jaw, and neck pain. I had embolization done and the following day, my jaw unclenched and there is no more pain. I did have CCSVI procedures, but they never improved my jaw. I don't know if it's a coincidence, but it is interesting.
I believe changes/improvements should be noted.

dlynn
i think this should be clarified because the reference to embolization many not be familiar to many readers.

I'm really interested in a broader explanation of this though ^

Dlynn has had two conditions that have influenced the expression of her CCSVI and one is partially treated by embolization.

These entities are pelvic congestion syndrome associated with and probably caused by renal vein compression phenomenon, also known as Nutcracker syndrome.

Nutcracker, as many readers here know, is a compression of the renal vein as that vein crosses over the aorta and under the superior mesenteric artery to enter the inferior vena cava. It is a common phenomenon in humans that is usually asymptomatic but can become symptomatic. It is a very common cause of chronic fatigue in children. The very high blood flow of the left renal vein loses its major output channel and must exit through its collateral branches that include two that drain into the cerebrospinal vascular network, namely the hemiazygous vein through the hemiazygo-renal trunk and the ascending lumbar vein and one that drains into the pelvis via the gonadal vein, known as the ovarian vein in women and the testicular vein in men. The gonadal vein drainage results in venous congestion in the pelvic and leads to hemorrhoids, painful rectal and ovarian vein varicosities, upper thigh and labial varicose veins, ovarian pain and painful menstrual cycles in women and varicoceles and infertility in men. Pelvic congestion can also occur in the absence of nutcracker phenomenon if the 4-6 sets of valves in the gonadal vein become incompetent. These valves normally enable one way flow from the pelvis toward the heart.

The treatment of the gonadal vein incompetency uses embolization to block these veins so that downward flow by gravity is prevented. Embolization is an endovascular procedure that deposits obstructing materials such as metal wires and coils and sclerosing agents within the vein resulting in occlusion of the gonadal vein.

The nutcracker is treated by either surgical bypass of or stent placement in the obstructed vein.

I have now had a few patients whose ccsvi symptoms have worsened after embolization of the gonadal vein without treatment of the nutcracker implicating renal vein obstruction in the CCSVI process.

drsclafani wrote:

HappyPoet wrote:

pelopidas wrote:A muscle suffering from chronic venous congestion is not oxygenated, it's swollen and short, most of the time it's in spasm. It can't function well. This absence of normal function leads to wrong posture and lack of complete movement of the head, the back, etc (it depends on what muscles are involved). These all cause pain. Then of course misalignment of the spine follows.

Hi pelopidas, very interesting.

It seems like you've given a possible cause of misalignment of the Atlas (C1): Upper cervical spinal trauma caused by CCSVI.

For 'emissary venous congestion' cases of CCSVI, if there is a misaligned Atlas, relieving the CCSVI could possibly allow for a "specific upper cervical" chiropractic adjustment, such as AO, to hold for as long as the CCSVI is relieved, yes?

If this CCSVI is not relieved, the patient would then continue to suffer from the negative effects of both CCSVI and a misaligned Atlas, both of which are theorized to cause demyelinating brain and cord lesions. Recent upright MRI studies show that CSF flows that are interrupted by a misaligned Atlas can violently reflux against the brain. Also, a misaligned Atlas can impinge veins, arteries, and nerves.

In my strong opinion, for this special case of CCSVI, the IR should, for the patient's sake, go out of his or her comfort zone and suggest to the patient that a "specific upper cervical" chiro consultation be made to find out if the patient's Atlas is, indeed, misaligned. Collaboration between the two doctors, for the patient's sake, really should become the standard in these cases.

Comments? Dr. Sclafani?

Happy POet

At the outset, I want to say that I think it would be irresponsible at best for a physician to go outside his or her comfort zone, ie. knowledge and experiential base, to make recommendations about which he or she is not familiar or expert. I know many patients find this disappointing but this is not part of my training or practice. I would not make specific recommendations about how to treat a fracture, which medications and doses of DMD to use, how best to dye one's hair. This is neither a refutation nor a affirmation. I do not particularly think it has been helpful for neurologists to be proclaiming opinions about venous disease either. In this respect i keep my rather limited opinions about upper cervical to myself.

I use the term trauma in a more limited basis. Firstly, the number of patients who have , during a long life , sustained some trauma to the neck is tremendous. Who hasnt had some car accident, fallen on the head as a baby, violently sneezed, etc? More violent traumas are indeed quite significant. But to call venous congestion a cause of upper cervical trauma just doesnt reach my level of the definition of trauma. In other words, we really need to look at this from a very controlled view. Is the incidence of upper cervical trauma any different among PwMS and patients without neurological disease?

I hope you hear what i am saying not as nihilism or negativity, but as being true to my own knowledge and understanding. I do think that poor CSF drainage is a big part of this story. I will continue to work on that from the venous side because that is my expertise.

Thank you for your honesty, Dr Sclafani.

Respectfully, I'm saddened that you would not suggest a consult to a doctor who is "familiar and expert" with upper cervical misalignments--it's just a consult, after all--and that you would let an MS patient possibly live with a misaligned Atlas. I must say I'm surprised you have this attitude because you're the doctor who told us that you performed an IJV ligation on your own wife which, imo, is much more radical than saying to a patient, "Due to the type of CCSVI I think you have, you might want to consider having a consult with a "specific upper cervical" doctor to find out if your Atlas is out of alignment."

I agree the word "trauma" is too strong a word--perhaps the word "problem" is better.

Hi,
I find the conversation interesting when there is mounting evidence that the original Schelling research is now being supported by the Specialised Cervical Upright MRI and that there are not more 'Specialists' looking into this situation where the Blood and CSF flows are inter-related with MS and co-incidentally this is related to CCSVI, and even more interesting is that the insights of Upright MRI showing the 'Schelling Back Jets' is being linked to Dysautonomia.

I am pleased to see the CCSVI Alliance Team headed by Sharon Richardson is recording and presenting these findings so that the direction of discussions at Conferences etc will push these connections to a better understanding of the 'Big Picture' the full 'Jig Saw' of de-generative Diseases.

As you were,
Nigel

drsclafani wrote:
Dlynn has had two conditions that have influenced the expression of her CCSVI and one is partially treated by embolization.

These entities are pelvic congestion syndrome associated with and probably caused by renal vein compression phenomenon, also known as Nutcracker syndrome.

Nutcracker, as many readers here know, is a compression of the renal vein as that vein crosses over the aorta and under the superior mesenteric artery to enter the inferior vena cava. It is a common phenomenon in humans that is usually asymptomatic but can become symptomatic. It is a very common cause of chronic fatigue in children. The very high blood flow of the left renal vein loses its major output channel and must exit through its collateral branches that include two that drain into the cerebrospinal vascular network, namely the hemiazygous vein through the hemiazygo-renal trunk and the ascending lumbar vein and one that drains into the pelvis via the gonadal vein, known as the ovarian vein in women and the testicular vein in men. The gonadal vein drainage results in venous congestion in the pelvic and leads to hemorrhoids, painful rectal and ovarian vein varicosities, upper thigh and labial varicose veins, ovarian pain and painful menstrual cycles in women and varicoceles and infertility in men. Pelvic congestion can also occur in the absence of nutcracker phenomenon if the 4-6 sets of valves in the gonadal vein become incompetent. These valves normally enable one way flow from the pelvis toward the heart.

The treatment of the gonadal vein incompetency uses embolization to block these veins so that downward flow by gravity is prevented. Embolization is an endovascular procedure that deposits obstructing materials such as metal wires and coils and sclerosing agents within the vein resulting in occlusion of the gonadal vein.

The nutcracker is treated by either surgical bypass of or stent placement in the obstructed vein.

I have now had a few patients whose ccsvi symptoms have worsened after embolization of the gonadal vein without treatment of the nutcracker implicating renal vein obstruction in the CCSVI process.

Thank you, very easy to understand and clearly written.

In your opinion how did this patients treatment using embolization relieve jaw/neck and inner ear issues?

HappyPoet wrote:
Respectfully, I'm saddened that you would not suggest a consult to a doctor who is "familiar and expert" with upper cervical misalignments--it's just a consult, after all--and that you would let an MS patient possibly live with a misaligned Atlas. I must say I'm surprised you have this attitude because you're the doctor who told us that you performed an IJV ligation on your own wife which, imo, is much more radical than saying to a patient, "Due to the type of CCSVI I think you have, you might want to consider having a consult with a "specific upper cervical" doctor to find out if your Atlas is out of alignment."

I agree the word "trauma" is too strong a word--perhaps the word "problem" is better.

HP,

Don't be saddened by a response of this nature, as I've gone through life I've learned to understand how useful it is that an intelligent person can say "I don't know" rather than take a stab in the dark. The answer isn't good or bad, it is simply not in the remit of Dr S to give you an answer that could do justice to your question.

In fact I'd prefer more medical specialists to say "I don't know" as it's not some sign of weakness or lack of intelligence. It leads us to asking more specific questions or going to find someone else who we hope does know.

drsclafani wrote:
Happy POet

At the outset, I want to say that I think it would be irresponsible at best for a physician to go outside his or her comfort zone, ie. knowledge and experiential base, to make recommendations about which he or she is not familiar or expert. I know many patients find this disappointing but this is not part of my training or practice. I would not make specific recommendations about how to treat a fracture, which medications and doses of DMD to use, how best to dye one's hair. This is neither a refutation nor a affirmation. I do not particularly think it has been helpful for neurologists to be proclaiming opinions about venous disease either. In this respect i keep my rather limited opinions about upper cervical to myself.

I use the term trauma in a more limited basis. Firstly, the number of patients who have , during a long life , sustained some trauma to the neck is tremendous. Who hasnt had some car accident, fallen on the head as a baby, violently sneezed, etc? More violent traumas are indeed quite significant. But to call venous congestion a cause of upper cervical trauma just doesnt reach my level of the definition of trauma. In other words, we really need to look at this from a very controlled view. Is the incidence of upper cervical trauma any different among PwMS and patients without neurological disease?

I hope you hear what i am saying not as nihilism or negativity, but as being true to my own knowledge and understanding. I do think that poor CSF drainage is a big part of this story. I will continue to work on that from the venous side because that is my expertise.

happy poet wrote:Thank you for your honesty, Dr Sclafani.

Respectfully, I'm saddened that you would not suggest a consult to a doctor who is "familiar and expert" with upper cervical misalignments--it's just a consult, after all--and that you would let an MS patient possibly live with a misaligned Atlas. I must say I'm surprised you have this attitude because you're the doctor who told us that you performed an IJV ligation on your own wife which, imo, is much more radical than saying to a patient, "Due to the type of CCSVI I think you have, you might want to consider having a consult with a "specific upper cervical" doctor to find out if your Atlas is out of alignment."

I agree the word "trauma" is too strong a word--perhaps the word "problem" is better.

i have feelings too, happy poet. I learned greatly from my experience with my wife. I regret what I advised her to have her jugular ligated. My actions have in part led me to stay within my expertise.

I do not see any reason why visualization of these emissary vein on venography would warrant any manipulation. I see no evidence of compression of these veins on the venograms.

EJC wrote:

drsclafani wrote:
Dlynn has had two conditions that have influenced the expression of her CCSVI and one is partially treated by embolization.

These entities are pelvic congestion syndrome associated with and probably caused by renal vein compression phenomenon, also known as Nutcracker syndrome.

Nutcracker, as many readers here know, is a compression of the renal vein as that vein crosses over the aorta and under the superior mesenteric artery to enter the inferior vena cava. It is a common phenomenon in humans that is usually asymptomatic but can become symptomatic. It is a very common cause of chronic fatigue in children. The very high blood flow of the left renal vein loses its major output channel and must exit through its collateral branches that include two that drain into the cerebrospinal vascular network, namely the hemiazygous vein through the hemiazygo-renal trunk and the ascending lumbar vein and one that drains into the pelvis via the gonadal vein, known as the ovarian vein in women and the testicular vein in men. The gonadal vein drainage results in venous congestion in the pelvic and leads to hemorrhoids, painful rectal and ovarian vein varicosities, upper thigh and labial varicose veins, ovarian pain and painful menstrual cycles in women and varicoceles and infertility in men. Pelvic congestion can also occur in the absence of nutcracker phenomenon if the 4-6 sets of valves in the gonadal vein become incompetent. These valves normally enable one way flow from the pelvis toward the heart.

The treatment of the gonadal vein incompetency uses embolization to block these veins so that downward flow by gravity is prevented. Embolization is an endovascular procedure that deposits obstructing materials such as metal wires and coils and sclerosing agents within the vein resulting in occlusion of the gonadal vein.

The nutcracker is treated by either surgical bypass of or stent placement in the obstructed vein.

I have now had a few patients whose ccsvi symptoms have worsened after embolization of the gonadal vein without treatment of the nutcracker implicating renal vein obstruction in the CCSVI process.

Thank you, very easy to understand and clearly written.

In your opinion how did this patients treatment using embolization relieve jaw/neck and inner ear issues?

this presentation and history and outcome make no sense to me. While i have seen vision improved by treating nutcracker, i have never seen improvements related to embolization of gonadal veins. Indeed, i have seen the opposite: that treatment of gonadal vein reflux without treating the nutcracker makes symptoms worsen