This Is MS Multiple Sclerosis Knowledge & Support Community

drsclafani wrote:they still think its snake oil
americans still sit on this duffs, barely making a peep.
I still see more patients from athens than from new york city.

We should be activists? Rallies, protests, walks, media.

Extraordinary claims require extraordinary evidence, and the association of CCSVI to MS has for some put it in the category of an extraordinary claim. The more you know about blood flow, the less extraordinary the claim becomes. I think this is part of why it is an uphill battle, and very frustrating.

bestadmom, have you thoughts on fundraising for Sal's trial?

Cece,

Email or PM me pls!

mb

drsclafani wrote:

Ellegaard wrote:Hi Dr. S

I have a question for you.

But first info
I am a Male, and have made 28 flights around our sun.
I am not diagnosed with ms, They tried to, but since there are no lesions in my brain, have no problems with my eyesight whatsoever, and still haven’t developed any handicaps. Apparently They can only diagnose people with visible brain damage, severe handicap or poor/no vision. I cannot be diagnosed, must wait till I meet the criteria. Guess that the diagnose would be PPMS with slow development. (it is 5 years since it started)
I describe my symptoms. Tired and heavy arms/legs, bad hearing on the left ear,
sensory disturbances, Muscle contractions, Annoying heart rhythm, mostly when lying on the left side + I feel when lying down on the left side that something is knocking in my neck. This knocking in my neck (as weird as it may sound ) Follows the annoying heart rhythm…
When going from sitting to upright position, sometimes I get headache. Feels like its located in the back of my head, and again this follows the heart rhythm.

I was in Germany for angioplasty last year. Internal jugulars left side 80-90% Closed. Right side 70 % closed. Got some sensation back and my heart rhythm felt better right after. But within days after the procedure, I felt a sudden heart race and the benefit was gone. ( I know restenose)

Here comes the big Question is it possible that all my symptoms are caused only by poor blood flow in my body, an to much/high blood pressure in my brain. = no lesions needed to get div. neurological symptoms.

Have you seen such a case before?


Greetings from Denmark.

i havent experienced one patient with this presentation. Venous obstructions come in many varieties. it is difficult to make assessments and judgments based on such limited data as 80-90% stenosis.

But i do not focus on MS. I focus on CCSVI. MS is a diagnosis of exclusion. CCSVI is a diagnosis of discernible narrowings of the veins associated with reversal of flow above the valves. IT may have something to do with MS. I dont know

but if you have 70-90% stenoses, then those are real, objective findings and they are associated with real clinical symptoms. If treating the obstructions results in improvement of the symptoms, then all it proves is that angioplasty can improve symptoms. if treatment of those obstructions leads to no improvements, then there are only a few possible explanations.
1. the obstructions are not part of the cause of the symptoms
2. the treatment of the obstructions was not technically successful and thus no clinical improvement is sustained.
3. the obstruction is coincident with some other cause of the symptoms.

By the way, why anyone would have objections to treating obstructions of veins of the brain while allowing treatment of obstructions of the veins of the leg is beyond my comprehension.

Is it in your opinion possible that my heart rhythm is affected by the stenosis in the veins?

I am not in agreement in any way shape or form with the FDA but drs doing angios and not collecting data for follow up is irresponsible and is a big part of the turf war as best ad speaks. Patient reported results is a joke and is not furthering our fight. Without actual substantiated procedural follow up by trained professionals, nobody is going to help us. Even if there is definable proof there will still be doubters. But here we are years into this thing and our best trials for ccsvi are patient emails. I have watched this site for the last two years and see people posting like mad , get their crack at the liberation, and then disappear. No doubt procedures are refined thanks to Sal, but we need some meat if the medical world is gonna take us seriously. Especially britspores

numbness23 wrote:I am not in agreement in any way shape or form with the FDA but drs doing angios and not collecting data for follow up is irresponsible and is a big part of the turf war as best ad speaks. Patient reported results is a joke and is not furthering our fight. Without actual substantiated procedural follow up by trained professionals, nobody is going to help us. Even if there is definable proof there will still be doubters. But here we are years into this thing and our best trials for ccsvi are patient emails. I have watched this site for the last two years and see people posting like mad , get their crack at the liberation, and then disappear. No doubt procedures are refined thanks to Sal, but we need some meat if the medical world is gonna take us seriously. Especially britspores

Couldn't agree more! One of the responsibilities I took on as a patient, was that no matter the outcome, I would be willing to continue to provide myself and remain committed to the follow-up part of this whole ordeal. I think others who are considering treatment should have the same mindset if indeed we wish to get substantive data on long term outcomes.

tilt

Dear Dr S, one more question regarding
No Evidence of Chronic Cerebrospinal Venous Insufficiency at Multiple Sclerosis Onset by
Claudio Baracchini, Paola Perini, Massimiliano Calabrese, Francesco Causin, Francesca Rinaldi, Paolo Gallo

Venography was performed to 7 people with probable MS that were positive in at least 2 ultrasound criteria, and to 3 more that we not. No problem was found, except for one hypoplastic RIJV.

My question is:
Is it feasible to find these 10 people, perform venography your way and compare the results? It would make a very good study and a (low cost) hard evidence against ccsvi-doubters.

tilt, did you have heat intolerance prior to your procedure?
do you have it now?

tiltawhirl wrote:

drsclafani wrote:Either you have had a phenomenal placebo effect and you really dont have neurological deficits or ccsvi has its own symptoms unrelated to MS or symptoms that are confused as MS, or symptoms that overlap with MS. It is the reason i assert that i do not treat multiple sclerosis and that by correcting venous outflow derangements i in some way reduce symptoms associated with ccsvi.

I would be willing to admit placebo effect or some sort of somatoform disorder very willingly, if:

1. I didn't meet the McDonald criteria for MS diagnosis clinically by having lesions demonstrated seperated by both time and space
2. I hadn't played the drums for 25 years and have an intimate knowledge of coordination; then watching that coordination slowly erode before my eyes
3. Both bowel and Bladder incontinence; Who craps their pants at the office for fun?
4. The ultimate optimist my entire life suddenly so depressed I was ready to check out permanently if something didn't change(no financial, marital, or family stresses to speak of or any reason to be depressed.)
5. I hadn't had 6 years of of using a cane and renting a wheelchair for longer distances.
6. I didn't have Bone-crushing fatigue
7. I didn't have incredible heat intolerance(My whole life I always said I should have been born in the Amazon basin as my favorite weather was always 95F and 80% humidity)

Otherwise, I look forward to more research being conducted by pioneers such as yourself to find out the answers to these questions to benefit others.

I am smelling the roses, and cautiously optimistic for the future.

Thanks Dr S.

tilt

Before you answer, tilt, we should agree on terms! By what you wrote above, you tolerate heat very well? You do well in heat and humidity.

When I describe my heat intolerance, it was that there was maybe a 2 degree range of 'comfort' for me. Above 72 degrees, I was negatively affected by heat; below 70 degrees, I was negatively affected by cold. Heat and cold intolerance, due to a broken 'thermostat' (autonomic nervous system)? I've improved since the procedure.

I think he is saying that he has also improved, from before the procedure, when he had incredible heat-intolerance (which was a definite symptom, not imagination, what range not specified - a new thing, since he was always heat-tolerant before the CCSVI) to after the procedure, when he got back his heat-tolerance. He is using the definitiveness of the symptom, its foreign-ness for him, and its disappearance, as another example of why this many improvements could not be mere placebo. On the other hand, is it a complete cure? Are the symptoms all gone, less severe, fewer? I have seen his drumming video, and I wish I could say the same.

mo_en wrote:Dear Dr S, one more question regarding
No Evidence of Chronic Cerebrospinal Venous Insufficiency at Multiple Sclerosis Onset by
Claudio Baracchini, Paola Perini, Massimiliano Calabrese, Francesco Causin, Francesca Rinaldi, Paolo Gallo

Venography was performed to 7 people with probable MS that were positive in at least 2 ultrasound criteria, and to 3 more that we not. No problem was found, except for one hypoplastic RIJV.

My question is:
Is it feasible to find these 10 people, perform venography your way and compare the results? It would make a very good study and a (low cost) hard evidence against ccsvi-doubters.

Just to repeat. There was only one venogram image shown as an example of normal venogram in patient with abnormal ultrasound.
I showed that venogram to fifty vascular interventionalists, surgeons and nephrologists. ONly one thought it was a normally appearing ultrasound.

it would not be feasible because patients would have to volunteer to come to the US, be mixed with other patients (to avoid my prejudice) and i would have to perform the venograms. If they have MS, they most probably would have venous abnormalities by IVUS and venography

Finally after all that effort, they probably would ignore the results

1eye wrote:I think he is saying that he has also improved, from before the procedure, when he had incredible heat-intolerance (which was a definite symptom, not imagination, what range not specified - a new thing, since he was always heat-tolerant before the CCSVI) to after the procedure, when he got back his heat-tolerance. He is using the definitiveness of the symptom, its foreign-ness for him, and its disappearance, as another example of why this many improvements could not be mere placebo. On the other hand, is it a complete cure? Are the symptoms all gone, less severe, fewer? I have seen his drumming video, and I wish I could say the same.

Hi all,

As far as heat intolerance, it was extremely high, however only became that way in the past year. In fact pre-November 2011 I was a smug little jerk in regards to the heat intolerance thing for pwMS. I loved the heat. My favourite weather was 35C and 80% humidity. Then we traveled to the Dominican last november for a family adventure and I was completely incapacitated by the heat. Figured it out by the third day(duh) and spent the rest of the trip in the room during the day, and outside only in the evenings. I felt fantastic as long as I wasn't out in the heat. Lesson learned.

It is 1 month today that I had my procedure. When I look at the list of changes post-procedure, I gotta be honest; it takes my breath away.:single tear:

Mobility - I am walking completely normally. I don't mean just no cane anymore and you can look at me and see that something is still wrong. I mean 100% completely balanced and normal walking. Was out to the Badlands on Sunday and walked the ridges no problem, although I must admit I was damned afraid of falling. Old habits. I occasionally still reach for my cane when I go to get out of the car. I run up and down the stairs now.

Fatigue - Ha! I was up until 3am the other day after being up at 8:30am. No nap! I find myself looking at the clock and thinking 'shouldn't I be tired?'

Heat Intolerance - So far so good! Been driving around in the heat all day. Spent time in +30C for more than a few hours and no sign of illness. The true test will be a trip to Walt Disney World in early August.

Pain - Transient in my left jug. That vein was in rough shape and I suspect that it was the reason I am on a 3 month course of Pradax, instead of one month. It wouldn't surprise me in my follow-up US if it has deteriorated. Thankfully the right side is a river at 20mm. No Headaches, no electric type pain down my left leg. No other pain. Groin is now superfly!

Mental/Emotional - Well this is a tough one. Obviously if the above occured in any person with any condition there would be elation with the above changes. That is definitely true. But this week has been a weird trough of down-ness. I suspect it's just the big comedown after being so high for so many weeks, combined with the relief of so far so good. I will be coming off my anti-depressants slowly over the next couple months and we shall see how the placebo has affected that particular symptom. I am seeing things far more clearly from a mental perspective, and taking on some of the more challenging liturature in physics is back to being a piece of cake.


tilt

drsclafani wrote:

mo_en wrote:Dear Dr S, one more question regarding
No Evidence of Chronic Cerebrospinal Venous Insufficiency at Multiple Sclerosis Onset by
Claudio Baracchini, Paola Perini, Massimiliano Calabrese, Francesco Causin, Francesca Rinaldi, Paolo Gallo

Venography was performed to 7 people with probable MS that were positive in at least 2 ultrasound criteria, and to 3 more that we not. No problem was found, except for one hypoplastic RIJV.

My question is:
Is it feasible to find these 10 people, perform venography your way and compare the results? It would make a very good study and a (low cost) hard evidence against ccsvi-doubters.

Just to repeat. There was only one venogram image shown as an example of normal venogram in patient with abnormal ultrasound.
I showed that venogram to fifty vascular interventionalists, surgeons and nephrologists. ONly one thought it was a normally appearing ultrasound.

it would not be feasible because patients would have to volunteer to come to the US, be mixed with other patients (to avoid my prejudice) and i would have to perform the venograms. If they have MS, they most probably would have venous abnormalities by IVUS and venography

Finally after all that effort, they probably would ignore the results

This may have been said before, sorry if I'm repeating,
These 'studies' would surely have video footage of the testing, this is sufficient IMO for other IR's to critique the study.
At the end of the day, and the beginning for that matter the tests/study is done to find the truth, not to prove one way or another any theory or belief.
Because there is already papers on the Doppler studies and MRV studies plus if I am correct an IVUS one or one soon then this should support the benefit of experienced IR's viewing the footage, end of story.
What is the point of publishing data done by incompetent observers?
This is Science not business isn't it?

*Is the footage allowed to be critiqued?

*Why repeat over and over expensive tests when the video coverage is going to 'unearth details regarding testing' because of the knowledge sharing and can be unbiased and for the greater good. This is likely true for all PTA treatments and should be recorded and kept as part of the IRB requirement!
*Is video footage accepted in Medicine? The IVUS work done as a comparison to dye and Fluro as well!

Regards Nigel

Hi Dr. Sclafani,

Given that heat intolerance is a symptom that appears to respond to treatment & that neuronal damage does not, can we assume that heat intolerance is a direct result of impaired blood flow?

I understand that temperature control within the human body is a very complex subject, but I also understand that the mechanism for cooling & regulating the temperature of the human brain depends largely on blood flow.

Would it be possible to use a thermography catheter to measure the temperature of the blood flowing to & from the brain of a patient before & after the procedure for comparison purposes?

A small temperature change could provide irrefutable evidence to support the procedure.

Hi Doc,

What is your opinion about this??

Dr. Mike Arata – Jugular Dysautonomia – The disease formerly known as CCSVI

You OK Dr.?
Haven't seen much of you?