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javabean wrote:Hello Dr Sclafani,
I had my procedure one month ago in Albany. I didn't feel any improvements right awaybut after about three days I had some great stuff happen. Twice I walked 25 minutes, another day I walke 15 minutes while holding my baby, and then around one mile. Since then my improvements have disappeared and I feel even a little worse -- maybe a post pregnancy flare? (It's only been two months). I know placebo can be one answer as to why I had such good results, but I think know my body well enough to say it was real. Do you think I could have restenosis after less than two weeks? I plan to have an ultrasound in a month, so I hope to get some clarity, but wanted your opinion on restenosis.
BTW, both jugulars were almost completely closed and my azygous needed treatment as well.
Thank you and sorry for the long-winded message.

one always has to consider restenosis or thrombosis. i would consult your doctors if i were you

pairOdime wrote:Dr. Sclafani,

What is the training process for your AAC colleagues concerning CCSVI? Does the group have meetings to share findings and discuss treatment techniques? Do some observe procedures before flying solo?

Anything you can share is greatly appreciated.
Thanks Dr. S....you are most definitely an angiographer (venographer too:).

i will be giving a second lecture to the group at the ETOP meeting the day before ISET

Cece wrote:Still waiting to hear about last Friday's incredible amazing findings and there's been procedures since then! This is what it was all about, the long wait and disruption of career and retirement. Hope you are enjoying yourself.

ISET is coming up quickly too. Can't wait to hear what comes out of that, when all our docs get together again.

leetz wrote:my procedure took about 45minutes??????????

The use of IVUS adds some time onto the procedure too....

that was a brilliant deduction cece

the case was on ivus.

unfortunately, the key images were corrupted in the computer and are irretrievable. So only I and the patient have ever seen such a thing.

The patient had gone to a european center and received angioplasties with improvement that lasted two months before symptoms came back.
at six months patient came to me.

The venogram showed a pretty good looking right ijv, but the left had a residual annular stenosis of the valve apparatus near the confluens which was dilated successfully with a 14 mm balloon at 19 atmospheres.

however ivus showed a second lesion, sort of a windsock in J2. NOTHING could be seen on the venogram. neither my venogram nor the prior venogram. however in retrospect, looking carefully, i think i might be seeing a dot shaped filling defect in the contrast media on the european study that was at the location where ivus was abnormal.

i tried to dilate this with the same balloon. a deep annular constriction of the baloon was noted. 20 atmospheres no effect, up to >40 atmospheres no effect.
so a cutting wire was used alongside the balloon......stilll no disruption of this annular stenosis.
and i stopped.

regret do i that i cannot show the images to my colleagues. it is a finding that no one has mentioned. it could be leading to persistent symptoms in an otherwise normal vein.

Dr

DX RRMS 2010 no DMD – CCSVI LIJ stenosis of the mid third – ballooned
At my 6mt follow up no stenosis – in the upper third of the right internal jugular vein there is extrinsic indentation from the adjacent common artery bifurcation ???. Flows are within limits.

My neck on the right side does give me pain to include the right of brain stem in addition to this I have a large mottled red rash (under my ear) that is sore/hot the rash this first appeared following my attack were I was first DX stroke…. (Weeks later) Then DX MS . Previous medical problems history of migraines… odd feeling in throat bottom lip tremor

Carotid sinus does this fit in line with CCSVI ?? And should I have this further investigated

Sorry about these repeat posts! It kept saying that there was a PHP error so I assumed it was n't working!

Dr.
My physical therapy/fitness center has acquired a WBV (whole body vibration) machine & have encouraged me to try it. I had ccsvi treatment 2 months ago. Is this a machine something I should utilize or would it be a negative to me having had angio recently? Also, in general has WBV proved helpful for ms? Thanks.

A long time ago you kindly took the time to answer this question of mine:

drsclafani wrote:

L wrote:Hello Dr Sclafani

I have another question. Quite a while ago, when I was 23 or so, I had a defibrillator implanted. I didn't want it but my family persuaded me. Anyhow, I got my first symptoms of MS, shortly after the operation. I have always suspected that one led to the other. I had it explanted when it was clear that it wasn't in fact necessary. Years later it became apparent that anaemia was leading to irregular heart rhythms, but anyway.

When I had it explanted they removed most of the lead but lost a stainless steel wire in me in the process. It was implanted via the subclavian vein. I've only just realised that this vein can be associated with CCSVI. I'm thinking ahead lots here, and I understand that a definite answer won't be possible with just this little information, but would you imagine if it turns out that my subclavian vein is occluded, this stainless steel wire lost in it will make my treatment more difficult/impossible?

I just had to ask.. I became more pessimistic as my MS progressed and now I'm imagining the (untreatable) worst.

Thanks so much.

if your subclavian vein is occluded, it might also involve your inominate vein. the junction of the IJV and the SCV form the inominate vein. Thus occlusion of the inominate vein may make it impossible to treat any IJV obstructions on that side
Moreover, someone told me a story about how they had radiation to the chest that resulted in stenosis of the subclavian vein. that in turn appears to have resulted in MS. could you be a second patient?

At the time I was worried about the possibility of being untreatable - it turns out that it was quite possible to balloon both jugulars. But only now I'm turning back to what you said about your being aware of another patient for who occlusion of the subclavian vein may have been a trigger for MS and, when I got my treatment in Alexandria, I completely forgot to mention my subclavian vein. Not very clever of me.

If the subclavian vein is occluded do you expect that it will be difficult to treat, given that there is a discarded length of stainless steel wire there? Could I send you my Dicom venogram images so that perhaps you could tell me if it is occluded or not, if possible? I'd be very grateful.

Many thanks to you!!! God bless! Keep up the good fight

Dr S,

a little while ago I posted my MRV - which indicated a problem low in my right jugular. You

asked to look at the venogram, and found what could potentially be a "wind sock" type

structure in my lower right jugular. Anyway, I had another venogram just before our

discussion - and now have the images. First...here is a before/after shot of my train wreck

left jugular which now looks quite nice:

[img][img]http://farm6.static.flickr.com/5164/535 ... edc0d5.jpg[/img]
left_jug_before_after by anatomical, on Flickr[/img]

And here is a before/after shot of my right lower jugular:

[img][img]http://farm6.static.flickr.com/5169/535 ... ab7016.jpg[/img]
lower_right_jug_before_after by anatomical, on Flickr[/img]

It should be noted that a modest stenosis was found in the upper third of the right vein, and the right valve appeared thickened. A delay in draining was observed. The upper area, and valve were ballooned. I can provide more images if need be. I suspect I didn't select the best image last time during our "wind sock" discussion.

I feel the latest angio treatment had a huge effect on my symptoms (my right arm no longer goes dead in any postural position)...though still have some modest odd sensations in the right side of my face, and tightness on the right side of my head.

Helen

Dr. Sclafani, have you seen any patients yet who have had something that is untreatable as a result of a prior procedure? I'm thinking of an undersized stent, a clotted-off jugular, anything like that? If you haven't yet, will you let us know if you do? This has been a concern of mine for some time now, it is upsetting if any of our pioneers suffer as a result of getting treated while the doctors are still working everything out.

drsclafani wrote:on the other hand, i can see ways to improve throughput

quicker nurse prep
quicker patient removal and clean up after case
optimize catheter, guidewire, sheath, balloon set ups
good assistant
cooperative patient
eliminate unnecessary steps

This is a good list; I hadn't thought of that side of things at all.

Cece wrote:Dr. Sclafani, have you seen any patients yet who have had something that is untreatable as a result of a prior procedure? I'm thinking of an undersized stent, a clotted-off jugular, anything like that? If you haven't yet, will you let us know if you do? This has been a concern of mine for some time now, it is upsetting if any of our pioneers suffer as a result of getting treated while the doctors are still working everything out.

Yes, cece. can you hold this thought for a week until i return home. i will look for the example of a problem with stenting that made it impossible for me to attempt anything
s

Dr. Sclafani, when you inflate a balloon for venoplasty what do you use to inflate it? Air or liquid? Thanks.

Patrice

drsclafani wrote:Yes, cece. can you hold this thought for a week until i return home. i will look for the example of a problem with stenting that made it impossible for me to attempt anything
s

That makes me sad for that patient and anyone in the same situation. Yes, I will hold the thought. Enjoy your trip. If I see you posting Saturday night, I will take it as you sharing a beer with all of us.

hopeful2 wrote:Dr. Sclafani, when you inflate a balloon for venoplasty what do you use to inflate it? Air or liquid? Thanks.

Patrice

liqui
liquid in the form of diluted contrast media.
air is not ideal for many reasons

compresibililty
lack of visualization
are the main ones

Dear Dr. Sclafani,

I agreed check-in Tokuda Hospital.
Please give me one of your opinions.
I had a stenosis of both jugular veins of 80-90% and 30% of the azygos. Angioplasty was performed only on the jugular veins.
Would the result of liberation treatment was better to have intervention on azygos vein?