This Is MS Multiple Sclerosis Community: Knowledge & Support

Ah, thankyou for the information Cece.

Dr. Sclafani,
This may be a strange question, but here goes. After I had my ccsvi procedure in 2009, I was doing better. I've had MS for 27 years, never the RR form. In February I had a fall in which I fell into a corner betweeen two doors and caught my cheek bones on the two right angle door frames so my head was thrust back as a result. I've also had a fall down 6 stairs that could have also been a contributing factor.
I saw my treating physcian during a post op visit and was still doing well at that point. I was a self-assessed 6.5 EDSS and still remain at that level. Seems like I have backed up some. My question is that because of my fall history and some of the symptoms I am currently experiencing which I had not previously (fine motor skills difficulty) is it worth looking at the possibilty of Chiari malformation as a possibilty even though it may be minimal and does not rise to the level of getting that diagnosis although could be still causing some problems? Would have shown up on the MRI I had done prior? I'm not implying that MS is not an issue but it may not be the only issue. I am aware that MS and CM share some symptoms. Just because a patient has a diagnosis of one condition does not mean that something else can't be part of the picture. I don't see MS and CM as mutually exclusive. They could be conditions that could co-exsist. I am aware that the length that I have had MS translates into more axonal death and therefore more permanent disability. Just curious as to why I seemed to be doing well and now not as well. I am aware that Dr. Zamboni's data suggest that PPMS and SPMS patients seem not to do as well as those with RRMS It may be that this is all so new, still and no one knows. Your thouthts would be appreciated.

Hi, Dr. Sclafani! Are you back from Italy yeeeet? There has been much excitement over in the ISNVD thread, what a conference. How did your ivus presentation go? What ideas did you find most intriguing over there?

it was a candy store of ideas

The ivus was enjoyed. during the week several on the podium supported the ivus value
a couple of people actually tnink that IVUs may be the gold standard ond eayh. I am thinking to try to use IVUS as the primary diagnostic tool in a few cases, to correlate in reverse, from the ivus to the venogram....see how that works.

the funnel intrigued many, and had some good comprehension but diagnostic perception of what the pathology are is still in discussion phase.

So i found food for thought
1. CCSVI ultrasound will go to four criteria with the Deep cerebral vein category being stated to need more quiremernt for reproducibility
2. good presentations on the fluid dynamics and anatomical/phsiological, phsycs correlations
3. MRV generally downplayed but flow quantification very interesting
4. optical coherence tomography was a bit disappointing to me. OCT was abnormal but i didnt think the results encouraged its use for followup
5. Clinical results were pretty good, but not randomized. One study only showed improvements in fatigue.


so much more to discuss

Dr Sclafani,

about OCT; In Poland (March 2010) i had an OCT scan, in Februari 2011 i had a GDX scan in Holland. Because of the difference in tests, the doctor would/could not 'speak out loud'....but she thinks she sees improvement in the status of the optic nerve (what would not be possible).

In December 2011 second GDX test.....i'm curious...

Robert

Clinical study of ccsvi treatment via ballooning/stenting?
Do you mean sustained improvement of fatigue?
Can you elaborate on #5 a bit?

That's exciting, I am glad it went over well, it is an amazing technology. You see more with IVUS than without it, what's not to like there.

Interesting!

With patients getting treated, I hope they hurry on figuring out what's pathologic and what's not. With the funnel idea, what I'm taking from it is that the narrowing is due to the funnel effect from the valve and that it's actually a healthy vein, but since it's narrowed it may look pathological and a doctor may choose to balloon there.

I did not expect that. Interesting!

I wish we'd had access to everything. What sou was saying of Dr. Begg's work was very interesting.

If you look at my MRV, the flow quantification seems to indicate reflux in my azygous, but there was nothing found there during my procedure.

There may be uses for MRV in the research but not in the direct clinical applications, if the doppler does the same job better and cheaper.

I would've liked something to come of that. That was Simka's work, iirc.

The doctors are still perfecting their techniques, too.
Pretty good, not randomized, and all but one study showed results in more than just fatigue.
As a fatigue sufferer, the talk of results in fatigue is in itself exciting.

Glad you are back.

Physical Therapy as follow up to treatment for CCSVI

Dear Dr. Sclafani,
Thought I would try this in the public thread As you know, I was treated originally on January 10th, had thrombosis of the left IJV . . so that was cleared out on Feb 4th, I'm on coumadin. doppler showed some clotting again yesterday, but I have no reflux. I now have Left IJV's 1 and 2 (a large collateral).

I was formally diagnosed RRMS in July 2008. I was still fully mobile at that time.

I've had some very good improvements (which I should put in the Tracking project thread). I think I fit in the moderate improvement category. I'm not in stiletto heals.

I have stronger legs, still some numbness in the top of my feet, I feel my lower legs a bit more. My feet are sensitive to temperature where they were not before.

I still do not have full control of my legs, although if I concentrate, I can walk without a cane but must think of every step. Balance is still questionable, I DO have much less brain fog and can sleep and dream.

I feel as though progression has stopped.

Its been recommended by other MS friends and a nurse at Dr. Haskals office, as well as one of the MSketeers, that physical therapy is AS important to regaining lost mobility.

QUESTION IS THIS: I'd spoken at length with Dr. Suchin about this, but have not gotten an indication that this should be a standard part of the treatment process . .physical therapy.

It's been said by the nurse, Angela and Carol Schumacher (treated by Haskal), that we should be treated as a stroke patient.

Then we could recover a lot more. Has this been discussed among you? Do you believe this will become part of the treatment/recovery plan?

I'd love if there were some sort of recovery plan and referal partnering for PT.

Thanks! )

Judy

hmm...maybe a dedicated ccsvi center, bringing together everything, including physical therapy....

I am wondering what dilatations means in this context:

http://ccsvism.xoom.it/ISNVD/Abstract-Denislic.pdf

I am open to answers from anyone.

Cece,

I had the chance to join the conference in Bologna. Very much the same question has been asked after that presentation, so here is the answer: The number of dilatations was addressing the total number of all venous locations where balooning was performed during a single first procedure (and not a number of repeated procedures on the same vein location of the same patient). I think some number like 3 to 5 have been mentioned, but not fully sure. Well, I also remember that sometimes cutting wire between the baloon and the vein wall was used (the technique first reported by Dr Tariq Sinan) and sometimes kissing baloons (i.e. 2 baloons of smaller diameter inflated beside each other in order to be able to use higher inflation pressure -possibly because a large diameter non-compliant high pressure capable baloon was not available?)
Unfortunatelly, no presentations have been made available as a file copy (to my knowledge), only the abstracts, which were sometimes very short.
JJ

Thank you, JohnJoseph. So they are basically saying that in progressive patients, the azygous had more prominent problems ("endovascular changes") such as webs and valves and narrowings and that there were a greater number of distinct areas that needed ballooning. If one roadblock in the azygous slows down flow, what do three to five roadblocks do?

Those 3 to 5 dilatation locations were ment for all the affected veins (azygous and IJVs), as I understood from the discussion Perhaps some formulations in the text are not fully clear to a native English speaker, but as I'm none myself (:wink:) I might perhaps anticipate what was really meant.
JJ

Dr Sclafani... I had my second CCSVI procedure by Dr Haskal in Baltimore 3 days ago (I live in St Louis). Right IJV stent and azygos look A-OK. However the stent in my left IJV is completely occluded by scar tissue. Dr Haskal told me that scarring in/around stents is not uncommon. Of course my subjective feelings are : YIKES !!!. The original procedure I had from Dr Sclafani was last August 17 and my symptoms were wonderfully improved.

Dr Haskal also told me that this stent problem can be treated with a more complicated procedure (open surgery?), but we should wait to see how my symptoms go.

If scarring in/around stents can be a side effect, are there no proactive measures to prevent this or make it less likely ? Is this a good reason NOT to choose stents ? My stenosis is/was very high in my IJVs... up by my jaws and ears.

ozarkcanoer

i have been laying low because i have been so busy. my, how active the board is now. like i said, it was mind candy at that meeting.

firstly, if you have a stenosis of a vein, it might not clot, it might form clots that dissolve, it might just send most of the blood on its merry way through the collaterals.

there is distinct differences between a healthy vein and a damaged vein.

if you injure the wall of the vein, the body sees it as a breach in the wall, even if there is no breach in the wall, only loss of the wallpaper. The body then sends its patchers(platelets) to the area to cover the hole and Aspirin makes them less sticky. Also signals go out to form clot to plug the hole. in other words thrombus is formed. Arixtra (fondaparinux) is an antithrombin drug. These medications are used to reduce the risk of thrombus caused by injury to the wall.

Has anyone noticed that the increase in thrombosis came when larger balloons were used. Dr. Sinan first told us that he could use 18-22 mm balloons without any problems. This was encouraging in our battle to avoid restenosis. However i only had one thrombosis prior to the large balloons: this was in an hypoplasia. I had none is patients dilated to only 14 mm, although i did have restenosis.

but after using larger balloons i had several, and while some were in patients with hypoplasia, others were in patients with good old fashion valvular stenosis. .

I have been thinking of how to reduce this thrombosis rate. part of the strategy should be to reduce the injury to the vein wall.

from IVUS i have noted that the vein wall is not narrowed at all. The valve elements INSIDE the vein are malformed and this malformation leads to stenosis because the valves that do not open, they may be stuck to each other, or may be fused to each other. That said, i have been focused on trying to treat the valvular malformations with a balloon that does not dilate the normal vein. So I measure the vein diameter and use balloons that do not exceed that diameter.

Its only been a few weeks so i cannot tell you that this works yet.

There, i am not lying low now.

stricture means narrowing due to scar. the entire wall is narrowed.