This Is MS Multiple Sclerosis Knowledge & Support Community

drsclafani wrote: if you don't mind, i prefer to let someone else address this. I just want to care for patients, not get involved in politics at this point.

Sounds great. Thank you for thinking of us so much. I didn't think it was political, but I guess you are right.

Thanks again for the extensive help, and I hope you are venoplastying soon.

drsclafani wrote:

ConstableComfortable wrote:Dr S.

When I hold my breath and tense up, my neck veins bulge. One side appears to back-fill gradually upwards. The other side nothing much happens and then a semi-circular bulge appears around my jaw line. Does this indicate ccsvi? Or am I just doing a valsalva maneuver a la Doepp?

The fact that both sides behave differently suggests to my un-medical brain that something is amiss.
I posted a clip on YouTube. If you have a minute could you take a look?



Thanks

The valsalva manuever such as you did, increases the pressure in your chest veins which drive the blood north and south of the heart. Thus you are either seeing distension of veins because they cannot empty because the valves are shut or the blood is going toward your head by an incompetent valve or because there is no valve. The valves you point to appear to be the external jugular veins and they might not have valves. Or one can have a valve that works and the other doesnt have a valve

venous insufficiency because of an incompetent valve can allow much blood to advance up into the jugular vein.

Venous insufficiency related to CCSVI results when there is inhibition of blood leaving the neck to enter the chest because the veinsare stenotic and have to find another way out of the n eck

such a shame that there are two types of venous insufficiency of the jugular veins. it makes this whole thing so confusing

I've only ever heard people talk about Internal Jugular veins in relation to CCSVI, is it possible to have reflux in the Externals?

And on the strength of what's happening to my external jugulars, albeit when blood is forced the wrong way up them, would you advise me to get all my neck veins doppler scanned?

Dr. S, what is your take on this? Could endolethin-1 be tied to stenosis?

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Increased endothelin-1 plasma levels in patients with multiple sclerosis.

Haufschild T, Shaw SG, Kesselring J, Flammer J.

University Eye Clinic, Basel, Switzerland.
Abstract

OBJECTIVE: We tested the hypothesis that the plasma level of endothelin-1 (ET-1) is increased in patients with multiple sclerosis (MS). The peptide ET-1 is one of the most potent known vasoconstrictors. An increased level of endothelin could explain some of the vascular symptoms of these patients.

MATERIALS AND METHODS: A specific radioimmunoassay was used to determine ET-1 plasma levels. Twenty patients with MS were compared to 20 age- and sex-pair-matched healthy subjects.

RESULTS: The plasma ET-1 levels were, on average, 224% higher in the patients with MS than in the controls (p < 0.005). The mean ET-1 levels (mean +/- standard deviation [SD]) were 3.5 +/- 0.83 pg/mL (min 2.13, max 5.37 pg/mL) in patients with MS and 1.56 +/- 0.3 pg/mL (min 0.9, max 2.13 pg/mL) in healthy volunteers. Neither the different forms nor stages of MS had an influence on the results. The ET-1 level was also not correlated with the duration of the disease.

CONCLUSIONS: The plasma ET-1 level is markedly and significantly increased in patients with MS. Neither the cause of such an increase nor the pathogenetic role is known.

tzootsi wrote:Dr. S, what is your take on this? Could endolethin-1 be tied to stenosis?

-----------
Increased endothelin-1 plasma levels in patients with multiple sclerosis.

Haufschild T, Shaw SG, Kesselring J, Flammer J.

University Eye Clinic, Basel, Switzerland.
Abstract

OBJECTIVE: We tested the hypothesis that the plasma level of endothelin-1 (ET-1) is increased in patients with multiple sclerosis (MS). The peptide ET-1 is one of the most potent known vasoconstrictors. An increased level of endothelin could explain some of the vascular symptoms of these patients.

MATERIALS AND METHODS: A specific radioimmunoassay was used to determine ET-1 plasma levels. Twenty patients with MS were compared to 20 age- and sex-pair-matched healthy subjects.

RESULTS: The plasma ET-1 levels were, on average, 224% higher in the patients with MS than in the controls (p < 0.005). The mean ET-1 levels (mean +/- standard deviation [SD]) were 3.5 +/- 0.83 pg/mL (min 2.13, max 5.37 pg/mL) in patients with MS and 1.56 +/- 0.3 pg/mL (min 0.9, max 2.13 pg/mL) in healthy volunteers. Neither the different forms nor stages of MS had an influence on the results. The ET-1 level was also not correlated with the duration of the disease.

CONCLUSIONS: The plasma ET-1 level is markedly and significantly increased in patients with MS. Neither the cause of such an increase nor the pathogenetic role is known.

Sounds like finding endothelin-1 plasma levels is a blood test...I wonder how expensive it is to do? Might be an useful marker for "MS" symptoms if a correlation could be established.

Donnchadh

drsclafani wrote:

pklittle wrote:

pklittle wrote:Dr. Sclafani,
Since each Dr. treating CCSVI seems to have their own twist (no pun) on how to test, pick the balloon size, etc, what advice would you give a patient that has been treated with venoplasty but had no relief of symptoms? More specifically, would it be worthwhile to seek treatment elsewhere by someone who is also experienced but who's approach is a bit different?
Pklittle

Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

i think that the next step is to determine whether there is or is not improvement in the Doppler results. If the Doppler is the same, i think another opinion is valuable. if the doppler shows eradication of the ccsvi criteria, then perhaps the brain damage is too great. but of course this decision is between patient and doctor

The figure that was posted in the forum the other day, that Dr. Sinan was finding and correcting azygous issues in 95% of patients, is startling if it can be verified.

While I agree with what Dr. Sclafani said above about the Doppler findings for the jugulars, the azygous cannot be imaged outside of a catheter venogram, and the azygous is an area in which the different docs have different techniques and expertise.

Dr Sclafani,

On the report of my Doppler, it says "Collateral circulation via left lobe of the thyroid gland was noted".

Is it something that can be the cause of thyroid gland disorders? I would like to know what you think about that.

Thank you very much.

Cece wrote:

drsclafani wrote:

pklittle wrote:
Bringing this over from the bottom of the previous page in hope Dr. S will see it. Thx

i think that the next step is to determine whether there is or is not improvement in the Doppler results. If the Doppler is the same, i think another opinion is valuable. if the doppler shows eradication of the ccsvi criteria, then perhaps the brain damage is too great. but of course this decision is between patient and doctor

The figure that was posted in the forum the other day, that Dr. Sinan was finding and correcting azygous issues in 95% of patients, is startling if it can be verified.

While I agree with what Dr. Sclafani said above about the Doppler findings for the jugulars, the azygous cannot be imaged outside of a catheter venogram, and the azygous is an area in which the different docs have different techniques and expertise.

I may be s o l... I was contacted today by my "followup" doctor and am going to have an ultrasound in the near future. My azygous was not ballooned in Albany, only the ijv's. I'm really curious to know if that 95% is correct????

pklittle wrote: I'm really curious to know if that 95% is correct????

I had forgotten where I heard it, but I found it: the figure was reported in David1949's post in the Kuwait thread, after he watched the youtube presentation of Dr. Sinan speaking at Dr. Sclafani's symposium:
http://www.thisisms.com/ftopicp-138724.html#138724

Based on the four CCSVI patterns described by Dr. Zamboni, only 14% had no azygous involvment.

Type A pattern (30%) is characterized by significant stenosis
of the proximal AZY or of one of the two IJVs, with a
compensatory contralateral IJV that appears with an
ample cross-sectional area; it was observed in 10 of 35
RR patients, in five of 20 SP patients, but never in PP
patients.

Type B pattern (38%) is characterized by significant stenoses
of both IJVs and the proximal azygous; it was
observed in 19 of 35 RR patients, in nine of 20 SP
patients, and in one of 10 PP patients.

Type C pattern (14%) is characterized by bilateral stenosis
in both IJVs, with a normal AZY system; it was observed
in four of 35 RR patients, in five of 20 SP
patients, but never in PP patients.

Type D pattern (18%) is characterized by the multilevel
involvement of the AZY and lumbar systems. Association
with the IJVs was observed in approximately 50%
and caused an additional obstruction in these patients.
It was observed in two of 35 RR patients, in one of 20
SP patients, and in nine of 10 PP patients.

A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency
Paolo Zamboni, MD,a Roberto Galeotti, MD,a Erica Menegatti, RVT,a Anna Maria Malagoni, MD,a Sergio Gianesini, MD,a Ilaria Bartolomei, MD,b Francesco Mascoli, MD,a and Fabrizio Salvi, MD,b Ferrara and Bologna, Italy

JOURNAL OF VASCULAR SURGERY
Volume 50, Number 6

Dear Dr. Sclafani,

Here is my situation... I've done the procedure in July the 8th to correct stenosis in the LIJ and RIJ and three in the azygos. Dr. Martins Pisco put a stent in my left jugular and did angio in the right and in the azygos. I felt some small improvements right afterwards but they resumed one week after. In September, I experienced a small relapse and did a course of steroids. I have talked to Dr. Pisco about this and he thinks that there might have been some restenosis, probably in teh right jugular. I have agreed to go back later for a new procedure in which he'd probably put a stent in my RIJ.

What's your opinion on this? I understand you oppose stenting but in what grounds? The rate of restenosis in jugulars has been quite high and many people are flaring as they renarrow. Is there a better alternative?

Thanks for your attention.

Spiff

Squeakycat wrote:Based on the four CCSVI patterns described by Dr. Zamboni, only 14% had no azygous involvment.

Type A pattern (30%) is characterized by significant stenosis
of the proximal AZY or of one of the two IJVs, with a
compensatory contralateral IJV that appears with an
ample cross-sectional area; it was observed in 10 of 35
RR patients, in five of 20 SP patients, but never in PP
patients.

Type B pattern (38%) is characterized by significant stenoses
of both IJVs and the proximal azygous; it was
observed in 19 of 35 RR patients, in nine of 20 SP
patients, and in one of 10 PP patients.

Type C pattern (14%) is characterized by bilateral stenosis
in both IJVs, with a normal AZY system; it was observed
in four of 35 RR patients, in five of 20 SP
patients, but never in PP patients.

Type D pattern (18%) is characterized by the multilevel
involvement of the AZY and lumbar systems. Association
with the IJVs was observed in approximately 50%
and caused an additional obstruction in these patients.
It was observed in two of 35 RR patients, in one of 20
SP patients, and in nine of 10 PP patients.

A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency
Paolo Zamboni, MD,a Roberto Galeotti, MD,a Erica Menegatti, RVT,a Anna Maria Malagoni, MD,a Sergio Gianesini, MD,a Ilaria Bartolomei, MD,b Francesco Mascoli, MD,a and Fabrizio Salvi, MD,b Ferrara and Bologna, Italy

JOURNAL OF VASCULAR SURGERY
Volume 50, Number 6

Dr. S. What does proximal mean? I understand it means where it starts ... so where is the proximal part of the azygous?

Squeakycat wrote:Based on the four CCSVI patterns described by Dr. Zamboni, only 14% had no azygous involvment.

Type A pattern (30%) is characterized by significant stenosis
of the proximal AZY or of one of the two IJVs, with a
compensatory contralateral IJV that appears with an
ample cross-sectional area; it was observed in 10 of 35
RR patients, in five of 20 SP patients, but never in PP
patients.

That first category has an "or" in it, so it could mean jugular or azygous. I'd divide that category in half and add an additional 15% to your 14% figure, making 29% with no azygous involvement, but with the caveat that my math is monkey math.

Besides Dr. Sclafani and Dr. Sinan, do any of the other docs seem like azygous experts? It's ok to pm me rather than post here.

ConstableComfortable, the external jugulars drain the face, not the brain, so if there is reflux I don't think it would damage the brain like IJV reflux.

Are these azygos involvements refering to just stenoses or also those infamous 'webs'? I think identifying the webs is much more difficult than identifying blockages. Are the webs visible by catheter venography? I was under the impression this is not necessarily true and that was the reason Dr Tariq uses the diagnostic ballooning technique.

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.

Cece wrote:

pklittle wrote: I'm really curious to know if that 95% is correct????

I had forgotten where I heard it, but I found it: the figure was reported in David1949's post in the Kuwait thread, after he watched the youtube presentation of Dr. Sinan speaking at Dr. Sclafani's symposium:
http://www.thisisms.com/ftopicp-138724.html#138724

For information, Dr. Sinan reported that 95-96% of his patients have abnormal valves or webs in the azygous. He said this at 42:00 to 42:40 into the presentation at

Squeakycat wrote:Based on the four CCSVI patterns described by Dr. Zamboni, only 14% had no azygous involvment.

Type A pattern (30%) is characterized by significant stenosis
of the proximal AZY or of one of the two IJVs, with a
compensatory contralateral IJV that appears with an
ample cross-sectional area; it was observed in 10 of 35
RR patients, in five of 20 SP patients, but never in PP
patients.

Type B pattern (38%) is characterized by significant stenoses
of both IJVs and the proximal azygous; it was
observed in 19 of 35 RR patients, in nine of 20 SP
patients, and in one of 10 PP patients.

Type C pattern (14%) is characterized by bilateral stenosis
in both IJVs, with a normal AZY system; it was observed
in four of 35 RR patients, in five of 20 SP
patients, but never in PP patients.

Type D pattern (18%) is characterized by the multilevel
involvement of the AZY and lumbar systems. Association
with the IJVs was observed in approximately 50%
and caused an additional obstruction in these patients.
It was observed in two of 35 RR patients, in one of 20
SP patients, and in nine of 10 PP patients.

A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency
Paolo Zamboni, MD,a Roberto Galeotti, MD,a Erica Menegatti, RVT,a Anna Maria Malagoni, MD,a Sergio Gianesini, MD,a Ilaria Bartolomei, MD,b Francesco Mascoli, MD,a and Fabrizio Salvi, MD,b Ferrara and Bologna, Italy

JOURNAL OF VASCULAR SURGERY
Volume 50, Number 6

I think we can ignore the percentages and types of MS found as random given the very small number of participants. I had type C pattern found and I have PPMS where Zamboni found none out of his 10 PP patients. The patterns might prove interesting when applied to much larger studies, but are purely random with the few involved here. Even with these small numbers, they seem pretty randomly distributed to me.