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drsclafani wrote:We have allowed a suboptimal screening test to take center stage while obvious venographic abnormalities are amply and routinely seen in the peer reviewed literature. These venographic findings, reported in an adequate number of studies, have been largely ignored. The limitations of venography, inherent in a luminal imaging study of an intraluminal disease, only emphasize the degree of significance of these abnormalities. When augmented by an endoluminal imaging study such as intravascular ultrasound, the prevalence of venous abnormalities in patients with MS cannot be rejected.

I have seen image after image of abnormal jugular. They are recognizable. If all IRs had seen as many CCSVI jugular venograms as I have seen, we might be further along. Not to give up on the neurologists, but I expect great things from the IRs because they are the ones who understand blood flow and who can look at the same images as we have looked at and see the same things.

But proving this association is only of secondary importance. What is most important is that some patients with venous outflow obstructions have symptoms that improve after angioplasty, and at a higher rate than that described for placebos in trials of medications and other therapies. This is the most important thing that we have learned in three years.

I'm guessing this is important because symptom relief is reason enough to proceed with the intervention, and figuring out all the rest such as cause and impact of ccsvi treatment on future disease course can happen at the slower pace?

Hi Dr. Sclafani,
I can't remember if I've asked this before, but do you see any role for the use of single photon emission computed tomography (SPECT) in measuring blood flow in CCSVI treatment, e.g., a before and after venoplasty comparison? In a clinical study it seems that it would provide solid evidence of changes in cerebral perfusion.

NHE

drsclafani wrote:

Lety wrote:

drsclafani wrote:Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information. But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series "zamboni, Simka".

Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than "zamboni, simka" http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me

I have made contact with Dr Cacciaguerra. But august is a difficult month and dr cacciaguerra was on vacation. he sent me some slides but there wasnt anything substantive on it.

i look forward to analyzing and critiqueing this concept.

Hi Dr. Sclafani

What do you think about this ? It is an important Award, were you in Boston at this congress ?

http://www.ccsvi-sm.org/?q=node%2F1867

best regards

Lety

dlynn wrote:Dr. Sclafani,
on another thread, "Albany Researchers Cancel MS Clinical Trial", you mention "There are patients who have delayed onset of some improvements up to one year after treatment" Can this be the case also in treatment of NCS and PCS?

Interesting question. I must admit that my sample size of patients with NCS (nutcracker syndrome) and PCS (pelvic congestion syndrome is much much smaller than for strictly CCSVI. There are also differences in presentations as well. For example many patients with NCS and PCS have very different symptoms manifested by pelvic pain, pelvic floor weakness, and varicose veins, varicose veins, blood and protein in the urine and anemia. The myelopathy described in NCS by Alboutier and Leriche in the mid 1970s is probably a component of CCSVI since they described patients with spinal venous congestion caused by renal vein compression associated with other venous obstructions including the internal jugular veins, azygos system and iliac veins. Delayed improvements have been reported by Scholbach with medical treatment of NCS. My experience is mostly with patients with both ncs and ccsvi associated with MS. Some patients gradually improve many symptoms. It is impossible to determine in such cases if any particular vein treatment is more instrumental in benefits.

dlynn wrote: Have any of your CCSVi or NCS (20 yrs. or more dx) patients regained strength in their legs post procedure?

most definitely. But i think that a better predictor is the degree of disability rather than duration of MS. Severe spastic paralysis usually does not improve too much. However weakness and foot dragging can definitely improve.

dlynn wrote:What improvements do you typically see in patients with 20+yrs. since diagnosis?


thank you

the most common improvements are cognitive improvements, balance, vision, fatigue, memory, To less degree motor strength, improved gait, sensory deficits. Sometimes one improves, sometimes all. sometimes none...It all depends on the degree of neuronal death

drsclafani wrote:Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information. But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series "zamboni, Simka".

Lety wrote:Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than "zamboni, simka" http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me

drsclafani wrote:I have made contact with Dr Cacciaguerra. But august is a difficult month and dr cacciaguerra was on vacation. he sent me some slides but there wasnt anything substantive on it.

i look forward to analyzing and critiqueing this concept.

Lety wrote:Hi Dr. Sclafani

What do you think about this ? It is an important Award, were you in Boston at this congress ?

http://www.ccsvi-sm.org/?q=node%2F1867

best regards

Lety

Lety, i was not at this meeting. I read your link. Unfortunately there was no data on outcomes of this type of surgery. I am very interested and curious about this kind of phasic obstruction. If release of muscle compression (a phasic narrowing) results in durable clinical improvements, then I will have to review all my cases to determine who might be a candidate for this surgery

pelopidas wrote:

drsclafani wrote: The issue here is not about MS, it is about whether venous outflow obstructions can result in neurological symptoms. It is about whether opening venous outflow improves some clinical manifestations often seen in MS.

We need to put MS on the back burner and focus on the symptoms.



s

I think that this is how a conference of the neurovascular diseases should start with.
I feel really sorry about all those past years we were constantly using veins for catheterisation, infusion, central venous pressure
We never deeply studied them

and maybe this is what we have to do, examine a great number of neurological patients with MS- like symptoms by ivus assisted venography

But then neurologists should help

P, I agree with you on that.

Well, rome was not built in a day.

tzootsi wrote:Hi Dr Sclafani,

Your latest comments were sensibe and thoughtful.
Another one - what is your take on Dr. Sergio Gianesini's procedure to alleviate vein compression via surgery?

http://www.ccsvi-sm.org/?q=node%2F1867

my take is uncommitted and looking forward to seeing results of this surgery.

drsclafani wrote:

drsclafani wrote:Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information. But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series "zamboni, Simka".

Lety wrote:Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than "zamboni, simka" http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me

drsclafani wrote:I have made contact with Dr Cacciaguerra. But august is a difficult month and dr cacciaguerra was on vacation. he sent me some slides but there wasnt anything substantive on it.

i look forward to analyzing and critiqueing this concept.

Lety wrote:Hi Dr. Sclafani

What do you think about this ? It is an important Award, were you in Boston at this congress ?

http://www.ccsvi-sm.org/?q=node%2F1867

best regards

Lety

Lety, i was not at this meeting. I read your link. Unfortunately there was no data on outcomes of this type of surgery. I am very interested and curious about this kind of phasic obstruction. If release of muscle compression (a phasic narrowing) results in durable clinical improvements, then I will have to review all my cases to determine who might be a candidate for this surgery

Dear doc. Sclafani , yes it is very interesting

I sent you a PN

Dr. Sclafani,
How is "neuronal death" determined, or measured? And can it be replaced or restored ever in time?
What is "spastic paralysis"? Do your CCSVI patients (have headaches) notice improvement in headaches, or migraine?

Thank you for all your replies, time and effort. I appreciate it greatly, it's all so very helpful.

dlynn wrote:Dr. Sclafani,
How is "neuronal death" determined, or measured? And can it be replaced or restored ever in time?
What is "spastic paralysis"? Do your CCSVI patients (have headaches) notice improvement in headaches, or migraine?

Thank you for all your replies, time and effort. I appreciate it greatly, it's all so very helpful.

it is very difficult to determine or measure the degree of neuronal death. The goal of stem cell therapy is to replace dead neurons.

Headaches are among the most common symptoms in my patients. Many do get improvement in headaches.

Not certain, but I think "Brain Volume" is an indicator of neuronal death.

CureOrBust wrote:Not certain, but I think "Brain Volume" is an indicator of neuronal death.

True. And hydrocephalus is explained as a effect of loss of brain volume. but some of that hydrocephalus may be due to inhibited csf drainage. And decreased cerebral perfusion may reduce brain volume. So I didn't want to give a definitive answer. But yes brain volume is a sign of scarring of the brain

Dr. Sclafani,
Is stem cell therapy the only way to replace neurons, can the body naturally replace them in time?
What is spastic paralysis? Can Hydrocephalus resolve after CCSVI treatment or will there always be issues due to scarring?

thank you

dlynn wrote:Dr. Sclafani,
Is stem cell therapy the only way to replace neurons, can the body naturally replace them in time?
What is spastic paralysis? Can Hydrocephalus resolve after CCSVI treatment or will there always be issues due to scarring?

thank you

I am not an expert in stem cell replacement of lost neurons but i think that the effectiveness of stem cells is not clear.

Generally dead neurons remain dead and are not replaced by new neurons in the brain. While attempts at remodeling, differentiation of existing precursor cells and migration of native stem cells do occur, there are many inhibitory substances and scar formations that inhibit the growth of replacement neurons.

Cerebrospinal fluid drainage is improved by improvement of extracranial venous drainage. At this time that is all i can say

drsclafani wrote:Lety, i was not at this meeting. I read your link. Unfortunately there was no data on outcomes of this type of surgery. I am very interested and curious about this kind of phasic obstruction. If release of muscle compression (a phasic narrowing) results in durable clinical improvements, then I will have to review all my cases to determine who might be a candidate for this surgery

I would be in that review! (I have a phasic upper left jugular narrowing.)
Release of muscle compression, shaving off a piece of the styloid process, and surgery to remove scar tissue that entangles the vein from the outside are the three different surgical approaches that I've heard of, once endovascular approaches such as stenting and angioplasty are eliminated as ineffective. Non surgical possibilities were neck stretches and botox of the muscle. If anything else is thought up or if any evidence comes in, let us know.