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Amazing.

Dear Professor Sclafani,

I thank you for your response on helminths. I was also considering trying the latest immune modulating drug alemtuzumab, an anti CD52 monoclonal antibody. It has been shown to increase the risk of immune thrombocytopenia to approximately 3% of trial patients. I'm worried that taking low dose aspirin is contraindicated and also undergoing surgery/venoplasty wouldn't be sensible. Should I consider taking alemtuzumab several months after my visit to your clinic?

Very best wishes,
Alex Gibbs

my goal was to illustrate that stenoses are present even in the absence of direct evidence of stenosis by venography.

Would this indirect evidence be obvious to most IRs? Or could it be missed?

In the hypoplastic vein, a 14 mm balloon is quite big. Was the area of the vein 30mm2, from the ivus measurements in image 5, which would usually indicate a size 7 balloon? Or even smaller if we should be taking the measurements from the 4 mm section instead of the 7 mm section? Are you concerned about this vein clotting? Will you extend the amount of time anticoagulants are taken? Would a high pressure size 7 balloon not have opened the valve?

The upper jugular area is interesting with the thrombus and change in appearance in flexion or extension. Why was a long balloon chosen? Is this an attempt to stretch the hypoplastic vein as a whole? Should the patient keep his neck in flexion as much as possible for the next several weeks, to maximize flow through this vein as it heals, and avoid extension?

Did the patients have more pain during the 14mm ballooning of the valve, or during the long balloon with the 8 mm balloon?

In recovery room i reevaluated him. Strength in his paralyzed ankle was normal and equal to the other side. numbness in both hands and feet had resolved. unlike the day before, he could feel the pain of a n eedle in his foot and fingers. Rhomberg;s test was normal, he could stand with his eyes closed.,

He came out of the dressing room carrying his cane, not using it. Amazing result.

Not just a wow result but a WOW result. Congrats.

Cece wrote:

my goal was to illustrate that stenoses are present even in the absence of direct evidence of stenosis by venography.

Would this indirect evidence be obvious to most IRs? Or could it be missed?

In the hypoplastic vein, a 14 mm balloon is quite big. Was the area of the vein 30mm2, from the ivus measurements in image 5, which would usually indicate a size 7 balloon? Or even smaller if we should be taking the measurements from the 4 mm section instead of the 7 mm section? Are you concerned about this vein clotting? Will you extend the amount of time anticoagulants are taken? Would a high pressure size 7 balloon not have opened the valve?

The upper jugular area is interesting with the thrombus and change in appearance in flexion or extension. Why was a long balloon chosen? Is this an attempt to stretch the hypoplastic vein as a whole? Should the patient keep his neck in flexion as much as possible for the next several weeks, to maximize flow through this vein as it heals, and avoid extension?

Did the patients have more pain during the 14mm ballooning of the valve, or during the long balloon with the 8 mm balloon?

In recovery room i reevaluated him. Strength in his paralyzed ankle was normal and equal to the other side. numbness in both hands and feet had resolved. unlike the day before, he could feel the pain of a n eedle in his foot and fingers. Rhomberg;s test was normal, he could stand with his eyes closed.,

He came out of the dressing room carrying his cane, not using it. Amazing result.

Not just a wow result but a WOW result. Congrats.

I only treated the valvular area with the 14 mm balloon, not the narrowed hyoplastic J2 and J3 segments. These I used a 8mm balloon 80 mm in length so that I could dilate these small segments with as few angioplasties as possible. He most definitely had pain, especially in the upper neck. I did not try to overdo the angioplasty.

i think it is impossible to keep a patient's neck in one awkward position for very long.

drsclafani wrote:

He came out of the dressing room carrying his cane, not using it. Amazing result.

The next day he went on a two block walk without his cane.

Bravo to the Brooklyn Maestro!!!

Respectfully,
David

Dr.S, Frances and I were pondering how in Australia some patients have been treated 8 eight times and are still soon loosing the benefits and gaining a little with each attempt which is motivating re-treatments. Non of these treatments are being done with IVUS by the way.
I have been trying to get the point across to PwMS over there (Aust) that having treatment is not purely about being able to, it is about outcomes, quality of work, knowledge sharing and asking for help when needed, risks from each treatment attempt.
For some reason the few that have responded have a small minded view that something is better than nothing.
My angle is that if people start to question, respectfully, why the number of treatments is high, why IVUS is not used even if only for confusing or difficult cases, why Australian IR's are going this on their own without the assistance and experience that is being offered to them and that this will turn the tide of the ego's and the blind leading the blind.
They had some other excuses like the Alfred is such a busy Hospital that they are doing what they can? And that people are thank full for certain Dr's rather than see the wood for the trees.
I guess I am bleating because people are not seeing the big picture, here they are going all out fund raising for instance and not checking what they are putting their money into, nor seeing what the rest of world has to offer as an alternative.

*My main point is actually regarding someone with 8 treatments. Is there risk that the point of no return has happened as the scaring for instance is still building up and issues are yet to develop?

Regards Nigel

I only treated the valvular area with the 14 mm balloon, not the narrowed hyoplastic J2 and J3 segments.

That makes much more sense. I had thought the J1 was hypoplastic as well. The images show otherwise.

These I used a 8mm balloon 80 mm in length so that I could dilate these small segments with as few angioplasties as possible.

Have you used a long balloon in this way before with similar veins, and has it been successful? I don't think we've seen an image with a long balloon like this one before, and we have not done much discussion of treating hypoplasia veins since the accelerated gradual maturation attempts did not succeed. I would be interested in hearing follow-up on the hypoplastic vein. (Should I be calling it a recanalized previously-thrombosed vein? Treatment does not vary between a recanalized thrombosed vein and a hypoplastic vein?)

Cece wrote: The upper jugular area is interesting with the thrombus and change in appearance in flexion or extension. Why was a long balloon chosen? Is this an attempt to stretch the hypoplastic vein as a whole? Should the patient keep his neck in flexion as much as possible for the next several weeks, to maximize flow through this vein as it heals, and avoid extension?

Interesting sidenote. For more than 20 years my family and friends have mocked me light-heartedly for using a folded bath towel in a pillow case as my pillow(about 2 inches thick). It keeps my neck perfectly straight when I sleep instead of lifting it up. It's just not been comfortable to sleep without my neck in a completely straight position. Not sure if it is related to this finding, but it sounds non-coincidental. :shrug:

Cece wrote:Did the patients have more pain during the 14mm ballooning of the valve, or during the long balloon with the 8 mm balloon?

Long balloon most certainly. The small vein was the most painful.

As they say: Seeing is believing. Not to derail this thread but I figure images that support the current case under discussion would be appropriate. If not, mods please move and I shall know for next time.

http://www.youtube.com/watch?v=guEgfwYb ... e=youtu.be

tilt

Dr.S, I think I am understanding your point on Trials from a new prospective.
If Trials are used to advance CCSVI they will need to be using a method that is proven to do one thing or another. At this stage there is no one knowledge on Treatments, no one approach/method that is proving successful in either finding or fixing the issues that are still being found, let alone treated successfully or in Reality defining a cause and effect and then stopping the cause.
I am having interesting discussions about the Alfred Trial on FB as it is close to home so to say. The feed back from PwMS is quite eye opening.
It does seem to all come down to money, the study seems to be following the Insurance Covered treatments, about 50. So if an IR's is blind till about 150 or more treatments so I have had to ask the Australians what they are doing?
"Where the money goes the Knowledge grows".
Good piece by Marie Rhodes about Doppler screening, the next level of dispute will no doubt be IVUS screening or reading!
Keep climbing! See you at the Top!
Nigel

Dear Dr Sclafani,

Thank you for all the work you are doing on CCSVI. I recently saw a TV documentary about MS from Oz and have since been catching up on the 2 years of CCSVI work. I have ME (or as it is known in the US ' chronic fatigue syndrome' - such a dumb name) and it has many overlaps with symptoms listed as CCSVI symptoms. Have you seen ME patients? Do you find they have CCSVI? If you are seeing patients it would be a good idea to go to an ME conference to show your work. I look forward to hearing if you have seen ME patients as my partner is extremely ill and we have no help here in NZ and I would really like to get him checked out further with you maybe. Thanks Jill

Hello Dr Sclafani,
I am new to this forum so please excuse me if I am posting in the wrong place.
I am hoping to attach images of my partner's second angioplasty of last year. The first, to clear the left jugular vein was a success in that my partner experienced significant improvements in fatigue, bladder control and mobility. The improvements were however short-lived; after about 8 weeks the symptoms began to return. The next angioplasty, 6 months after the first, found the left jugular vein to be blocked to the extent it was not possible to proceed. Is anyone able to advise how I can insert angioplasty images ( saved as jpg files) in the same way as others seem to have done in this thread? Thanking you in anticipation

Livinginhope wrote:Hello Dr Sclafani,
I am new to this forum so please excuse me if I am posting in the wrong place.
I am hoping to attach images of my partner's second angioplasty of last year. The first, to clear the left jugular vein was a success in that my partner experienced significant improvements in fatigue, bladder control and mobility. The improvements were however short-lived; after about 8 weeks the symptoms began to return. The next angioplasty, 6 months after the first, found the left jugular vein to be blocked to the extent it was not possible to proceed. Is anyone able to advise how I can insert angioplasty images ( saved as jpg files) in the same way as others seem to have done in this thread? Thanking you in anticipation

Upload the image to some place on the web like Flickr and then just put the address of the image between the message codes "[img]"%20and%20%20"[/img]"

drsclafani wrote:By flexing the neck, the vein is completely occluded with a lot of filling of posterior cervical veins connecting to emissary veins. In extension, the lumen looks great!

Can you explain what flexing and extension of the neck means? With such a dramatic difference, it would almost seem like an exercise that might provide some temporary relief.

Squeakycat wrote:

drsclafani wrote:By flexing the neck, the vein is completely occluded with a lot of filling of posterior cervical veins connecting to emissary veins. In extension, the lumen looks great!

Can you explain what flexing and extension of the neck means? With such a dramatic difference, it would almost seem like an exercise that might provide some temporary relief.

Flexing the neck means bending your head forward, chin to chest.
Extending your neck means bending your back to your face it to the sky.

but squeakycat, sometimes flexion and sometimes extension seem to block flow and other times the reverse is true.

On the record, I do not endorse this exercise. I fear that PwMS will be walking around pecking like birds, doing the sclafani manuever.

tiltawhirl wrote:

Cece wrote: The upper jugular area is interesting with the thrombus and change in appearance in flexion or extension. Why was a long balloon chosen? Is this an attempt to stretch the hypoplastic vein as a whole? Should the patient keep his neck in flexion as much as possible for the next several weeks, to maximize flow through this vein as it heals, and avoid extension?

Interesting sidenote. For more than 20 years my family and friends have mocked me light-heartedly for using a folded bath towel in a pillow case as my pillow(about 2 inches thick). It keeps my neck perfectly straight when I sleep instead of lifting it up. It's just not been comfortable to sleep without my neck in a completely straight position. Not sure if it is related to this finding, but it sounds non-coincidental. :shrug: tilt

you might look for a pillow like this. I find this shape to be very comfortable

Livinginhope wrote:Hello Dr Sclafani,
I am new to this forum so please excuse me if I am posting in the wrong place.
I am hoping to attach images of my partner's second angioplasty of last year. The first, to clear the left jugular vein was a success in that my partner experienced significant improvements in fatigue, bladder control and mobility. The improvements were however short-lived; after about 8 weeks the symptoms began to return. The next angioplasty, 6 months after the first, found the left jugular vein to be blocked to the extent it was not possible to proceed. Is anyone able to advise how I can insert angioplasty images ( saved as jpg files) in the same way as others seem to have done in this thread? Thanking you in anticipation

I can only answer in general terms questions posed on the forum, for record keeping and medicolegal reasons.

if you seek personal consultation, please use my patient email, ccsviliberation@gmail.com