This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. S does having Ultrasound testing give any sort of flow indications in cases like the one above?

It seems it could be to do with the flow improvement by making the valves slightly more open and in still in one piece as opposed to being fully against the wall and then returning/healing to original configuration and symptoms returned prior to seeing you?

Yet the end result was a situation of the valves partial function or total dyfunction destroyed and the residual remains attempting to reattach/heal and recreating a stenosis?

Is there reflux more pronounced and regular now?

The flow speed and volume in each treatment before and after might be of interest?

It would be interesting to be able to identify what the improvement is from the first treatment, it almost sounds like the recovery in some Stroke Treatments?

Is there a problem remaining with CSF flow that hasn't returned to normal or first treatment quality. The CSF flow and symptoms are very similar to CCSVI and MS symptoms?

Problems such as Chiari Malformation issues which are often related to the slowing of CSF because of restricted flow in the region of the Brain Stem (have or share symptoms with MS and CCSVI)?

Changing the vascular flow also changes the CSF and the Arterial flow and all three are interlinked and dependent on each other, change one and you change them all?

Adjustments to the Atlas/C1 are giving in some cases the same benefit as PTA and the flows improvements have been measured, (before and after the adjustment). Results are published by the way. This change in symptoms was attributed to CSF flow changes measured by MR, they occurred as quickly as on table improvements with some PTA? Co-incidence or part of the puzzle?

Having enough information detail with the PTA treatments so that observations can be made and understood with any change in symptoms, BUT which detail, there's a missing piece, what is it, HELP?

Regards,
Nigel

Sometimes my brain is so far behind the 8 ball now a days.

** The question appears to be what is more important flow or symptom relief?

** If opening the stuck valves but not flattening the valve against the wall, or changing the valve structure by crushing it against the wall, are we going to see a two stage analysis of what is happening to symptoms?

** It is beginning to appear that the flow is important in some instances but not all. If having reflux is controlled or eliminated there may need to a balance of the general flow to optimum perceived flow purely because of vein size?

** What is the average vein size and flow of 'normals' and working to achieve a general rule of flow for all patients?

** There must be some sort of averaging that gives an indication of what flow is 'best' and through which veins. In the same way as the issues with renal flows causes issues at some point of flow but above it?

** Finding the minimum level for a combination of all the veins and their variables and interactions?

Lunch time tomorrow would be good as we have some Kiwi's heading your way soon and an interested TV Producer hassling me!

Regards Nigel

WOW,
NZ TV producer wanting to get you on film Dr!
Hope the call goes well, spoke with Chris just now and seems he is open minded.
I was tempted to say 'well you can film me meeting the man himself'!

Regards,
Nigel

Could it be because it was a second procedure instead of a first procedure? The patient's angioplasty has already restenosed once which puts the patient in a subset comprised of patients whose veins are less cooperative. It has been suggested before by Dr. Siskin and Dr. Arata that second or later procedures may be less successful than first procedures but is not clear why this would be so.

Not much discussion happening but it is an important point.
Failure to obtain relief after angioplasty could mean:
1 - "CCSVI treatment is not for you"
2 - the veins restenosed quickly
3 - a stenosis went untreated
4 - ?

CCSVI is defined as impairments in venous flow in a particular set of veins, the big pipes that you are treating.

Is there any reason to think that there may not be problems in other cerebral veins that you don't image or treat and that these problems are the critical ones for a particular patient? The patient gets some relief from opening the jugular and/or azygous veins if there are impairments, but still has problems with other veins that you don't image or treat?

If this were the case, CCSVI treatment might provide some relief, but leave other problems untreated.

My own attitude is that if the first procedure is at all risky, the risk must be greater for subsequent ones. Dr. Sclafani, have you any information on rates of restenosis or other problems after later (2nd, 3rd, 4th etc.) procedures vs. the first one? Seems relevant if these multiple procedures are now getting to be more common. I suppose it is different depending on who did what.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I personally think that the issue is in the capillary beds or somewhere similar!

The damage over time in these cell by cell flow areas is going to need to be understood.

The benefits of diet, exercise and mindfullness are not 'fixing' the areas being PTA'ed but there is researched and peer reviews that show that this is making a difference in symptoms and progression.

From this info I have come to the place where we are working down the line of the actual effected areas so what we will have as results will be more dependent on damage accumulated over the course of time that the pre immune system damage is occurring. We need to find the fault itself. At the moment we are only working on an area of visualized issue way down stream from the visualized brain lesions and attaching a Theory to it!

The fine passages within the brain are where the actual symptoms are occurring and changing the flow is 'possibly' going to have long term benefits if the 'correct' flow is maintained.

Until the required flow is understood (measured and averaged) and the mechanism of leakage of the BBB is understood we are working in the dark! We need to look upstream to find the answers!

Regards
Nigel

"Finally, further confirmation came also pathological anatomy: a study in Cleveland showed that internal membranes and valve defects are present in 90% of dead people, already suffering from sclerosis."

https://www.facebook.com/notes/ccsvi-in ... 9382779919

Any questions?

Regards Nigel

CCSVI in New Zealand
(https://www.facebook.com/pages/CCSVI-in ... 1636357984)
A post I put on Arlene Pellar Hubbard's page to hopefully get some more minds involved in a question on TiMS by Dr. Sclafani;


Hi Arlene, a question for Team Hubbard please,

I have been watching and posting on TiMS on Sal Sclafanis page and there has been some discussion about the PTA outcomes for people who have had multiple treatments. The questions are mostly about the differences in symptoms after each treatment. There is difficultly knowing what each IR is interpreting and treating each time.
The main point Sal has made is about areas that are retreated and the size and pressure of balloons used each time. This particular case that Sal has used was a mild first PTA with good results that after some months lost the symptom benefits. When Sal retreated the same areas using IVUS he was able to measure that he could safely increase the balloon sizing and also found other areas of stenosis requiring PTA.
The symptoms did not change after the treatment and if anything balance for the Patient was 'worse' afterwards.
What all this has the discussion wondering is how we are going to 'see' what is happening with flows around the brain globally in general that give these varying outcomes. Most particularly that the first time PTA is giving the best symptom outcome rather than any of repeats of time.

** So what I am wondering is if MR has any way of visualizing the flows around the brain in the same manor that fMRI does with brain activity?

** Is this something the Team and Mark Haacke are thinking about?

If the IR's could see the flow pattern change around the brain regions globally when they are doing their various PTA's we will have a huge insight to what is happening at capillary level and at the white and grey matter lesions them selves.
At the moment the 'grey area' of why PTA is making some symptom changes for some people is slowing the process of PTA versus CCSVI versus MS knowledge, imo.
Regards,
Nigel

I am not sure that i would agree that repeat procedures are inherently more risky. For example, pressures needed to overcome stenosis seem less with repeated procedures, catheterization across the obstructions are usually easier on repeat procedures. Complications are not more common on repeat procedures.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Yes, that is possible, but i am studying the dural sinuses, the jugular veins, the brachiocephalic veins, the azygous vein, the left renal vein, the left ascending lumbar vein and the left iliac vein. There isnt much left to study.

The CCSVI theory of MS proposes that outflow obstruction results in backjets into the deep veins that lead to microhemorrhage around those deep veins and this results in inflammatory lesions, demyelinization and uiltimately axonal destruction with symptoms. The CCSVI theory of symptoms proposes that outflow obstruction deranges cerebrospinal hemodynamics and csf hydrodynamics and results in cerebrospinal dysfunction and symptoms.

When the veins are opened by balloon angioplasty, rapid compression of the dilated vein should no longer result in backjets but rather to improved forward flow back to the heart. Will that improve MS with time? Good question, needing a longer term answer. It probably depends upon how much neuronal destruction has occurred.

When the veins are open by balloon angioplasty, cerebrospinal blood flow and csf outflow should be improved. Should this lead to symptomatic improvements? Possibly. But if demyelinization of MS results in the same symptoms, it is possible that eliminating the venous outflow obstructions just won't have the same effect. If the symptoms of venous outflow obstruction predominate, then it is possible that patients will obtain clinical improvements.

This is how I rationalize why some patients obtain relief and others do not.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Dr. Sclafani,
I occassionally experience the L'Hermittes' sign. As of this past May, my IJVs' showed no reflux (ultrasound),
and my veins were patent.
But could this be restenosis or just the result of 19yrs. (since dx) of MS damage?
thank you

Yes, this could be residual of MS pathology. Unusual, since most patients state that they have had L'Hermittes sign early in their disease. I wonder how long most patients have this symptom. Would the group enlighten me?

reflux is only one of the signs of ccsvi, and after treatment, it is not the most reliable sign because venoplasty opens the vein and allows reflux to come from the heart up into the neck. So there are two potential reasons for reflux: restenosis and valvular incompetence.

I think the B-mode findings are more revealing after treatment.

DrS

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Hi, on the question of L'Hermittes I had it as an early symptom and peaked at about the two year point, it has since then decreased and if anything is only occasional and based on stress more than fatigue at this time of 6 years ill health duration.
Also on that note it wasn't until three years into my symptoms that a 16mm in length lesion became visible at C2 dorsal aspect of my cord, and now three years on the lesion is not detected on MRI, ironic because the sensory symptoms have decreased that were effecting from waste down during the last 3 years and motor symptoms have increased but there is no MRI indication of any change in the three year period other than the cord lesion was not seen on the MRI of one month ago.

** Dr a question regarding the possible reflux that occurs from the Heart back to the Brain after PTA. Is there a way of testing if the back flow has pressure?
** Wondering if the damage done to the capillary beds is still allowing a crossing of the BBB in/at some 'occasions' that may be the reason for symptom benefit to decrease over time and on repeat PTA there is no benefit because of the Historic damage/assesability to crossing the BBB?
** Is having the valves completely immobile or not functional enough to slow the return flow of blood back at the BBB something to consider/test for?

** Biggest Question ever! Have you considered linking up with Dr. Rosa and the Fronar Team to test the PTA benefits using their technology (Upright MRI and flow testing focused on Structural Alignments, CSF and Blood Flow)? I am wanting to travel and have both Dr. Rosa and Yourself evaluate me and the combination of understandings, IMO would make the trip worth me selling my Worldly Assets to afford the package? An opportunity has arisen to have the Team, Dr. Rosa/Fronar, asses my Health in NY.
So I am asking the best options available to find some Quality of Life again.

Be well,
Nigel

Question for Dr. S and all watchers,

** Do people with RRMS also have a RR symptom experience with PTA?

** Do people who have only had progression MS ever experience a relapse of symptoms after PTA?

** Question for Dr. S are you interested in doing a inspection with IVUS and not ballooning, purely to map any all veins for me?

Thought fodder,
Nigel