This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

I had CCSVI treatment in Aug 2010 (balloon angioplasty both IJV's)
I experienced 3-4 weeks of slightly improved walking (EDSS went from 6.5 to 6) which then reverted back pre-procedure condition
So in Dec 2010 had balloon angioplasty again, but this time as well as both IJVs there was 95% stenosis found and dilated with balloon angioplasty.
This time there was less profound improvements in walking. Again only lasting a few weeks,
so in Aug 2011 for the final attempt had balloon angioplasty again in the IJVs and azygous but only say very slight improvements, lasting just a few weeks.
I gave up on having anymore procedures in fear on damaging my veins and due to the lack of improvements.

- the last 2 procedures both said my renal veins were tiny and could not be dilated as they were too small - none of the radiologists saw May Thurner syndrome. Both dr's said my right IJV was more stenosed than my left IJV , which was surprising as my left leg had always been the weaker one.
But now my right leg is weaker than my left and my hands/fingers are noticeably weaker, when before the procedures i couldnt tell anything was wrong with my hands.

I have been taking LDN 2mg since 08' which had kept me stable with no disease progression of my SPMS, but since the 2nd and 3rd procedure i have deteriorated a bit

So my question is, has there been any new discoveries or improvements in the CCSVI diagnostics & treatment since mid-2011?
I dont want to have the same balloon angioplasty again as i can only see me having slight temporary improvement permanent permanent worsening/deterioration.

Hi dc10--
I'm sorry that your benefits did not last longer. It sounds like you may have a problem with the size of your veins, and honestly, there really isn't much that can be done to improve that situation. Stenting a hypoplastic vein can make the situation worse in some.

The biggest "improvement" would probably be the use of intravascular ultrasound (IVUS) to guide the treatment. This allows the IRs to see what's really going on inside the veins, in real time, with real flow. There have been no real improvements in stenting. Some IRs report better success using cutting balloons.

One thing I've discussed with Dr. Cooke and Dr. Dake is that they have noted that those who are able to continue to move and exercise have better success at remaining stenosis free. This may be due to shear stress, and how strong blood flow affects the endothelium, and maintains the lining of the vessel. There has been nothing published on this as of yet. But whatever you can do to keep moving, physical therapy, water exercise, seated yoga...do it.

Another development is being made by Dr. Scott Rosa, using FONAR upright MRI. He is finding that many pwMS have problems with the atlas which is contributing to venous outflow difficulties. He is documenting how cerebrospinal fluid moves better and has less reflux after adjustments of the atlas. I do believe CSF is going to be studied in closer detail. BNAC has recently published and presented research at ECTRIMS and ISNVD on the improvement in CSF flow speed, which continued a year after venoplasty. Slowed CSF is a known problem in neurodegenerative disease.

I wish I had better, more concrete news to give you. With progressive MS, you do not have years...and that must be frustrating. Make sure to do all you can to live a vascularly healthy lifestyle-limit stress, eat whole foods, don't smoke, move as much as you are able, supplement with vitamin D and eat healthy fats, like omega 3. I'm sure you know all of this...but it's always good to go over it. (I need to remind myself and Jeff every day Always talk all of this over with your doctor.

It's good to hear from you. Keep checking in,
all best,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello dc10! Good to see you here!

Actual improvements since 2011 would be that the IRs have more experience. So they might do a better job of finding everything and treating everything appropriately. And IVUS is in slightly more common use, but by no means is it universally used. The anticoagulation may have changed since 2011 depending on your doctor.

There are IRs who are pitching this or that idea but a lot of that is marketing which I am wary of.

Quick restenosis can mean that it was underdilated. That would actually be great because it would mean that angioplasty hadn't failed but it was never properly achieved.

If you had any of the more common symptoms of Nutcracker syndrome like flank pain or blood in the urine, it could be worth consulting with a vascular surgeon. For actual nutcracker syndrome, there are people who have been treated with surgical grafts from the saphenous vein in the leg.

There's always jugular stents if the veins truly won't stay open but that needs to be a very careful decision made with an expert CCSVI IR.

thanks cheerleader & cece for your replies,

i weight train 3 times a week, but after the angioplasties i left it several weeks before going back to weight training s i was concerned it could cause restenosis from the raised heart rate/blood circulation.

last year i had upper cervical chiropractic treatment, and the alignment corrected, however i didnt see any improvements in my symptoms, unfortunately.

i follow a very healthy Wahls diet with gluten free grains, and No gluten, dairy, sugar, soy or legumes.


after the first restenosis i was concerned they didnt dilate my veins sufficiently, so in the subsequent treatments i made a point to the IR's i wanted bigger balloons to be used,
in the first 2 procedures they used balloons 14mm diameter for the IJVs and up to 10mm for the azygous (only ballooned in 2nd procedure) .

The third IR said he dilated the right IJV 'proximally until 10mm, distally until 18mm, the left jugular vein until 16mm'.

"Percutaneous exploration of the azygos vein showed hypoplasia and several stenosis dilated until 10mm.
Percutaneous exploration of the left illiac vein showed no signs of stenosis. "

are these measurements big balloons in todays standards for the IJVs & Azygos?

There's no way to say if the balloons were too small, just right or too big without knowing what size the vein is.
The distal stenosis means upper jugular stenosis. That got ballooned with an 18 mm balloon? That's an area where the stenosis is often something untreatable by ballooning.
Hypoplastic azygous is worrisome. Especially in the context of hypoplastic left renal vein. But the azygous was dilated in the second procedure and looked good in the third procedure? That's good.
How would you rank your IR in terms of experience? Had he done a few procedures or over a hundred or more than that? I'm going to go with the #1 advancement being IVUS and the #2 advancement being experience, so that the doctors are higher up the learning curve which is important because CCSVI is challenging.

i appreciate everyones veins would be different sizes, but are the sizes of the balloons they used abnormally small/big for the IJVs/Azygos or are the a pretty standard size?

I cant say for sure how much experience the IR had but there was a 1year+ waiting list so can only assume they were performing angioplasties daily for at least 1 year

lets hope more research is done into CCSVI diagnostic/treatment

I just hope having balloon angioplasty several times cannot result in death in the long run!

The azygous vein at 10 mm is either just right or large. Zamboni used 8 - 10 mm balloons in the azygous. But 10 mm may have been too large since it's mentioned that the vein was hypoplastic.
The upper jugular at 18 mm needed to be looked at with IVUS under valsalva to see if it warranted ballooning at all. If it was a physiological stenosis, it would have just gone right back to being stenosed. Maybe that's why such a large balloon was used, if it didn't seem to be opening up in response to ballooning with smaller balloons. This is speculation.
The proximal right jugular, which is where the valves are, was ballooned at 14 mm during the second procedure and only 10 mm during the third procedure. If the 14 mm size was right or on small side, then the 10 mm may have been much too small.
The left jugular was ballooned at 14 mm during the second procedure and 16 mm during the third. Those are in pretty close agreement with each other.

I'm going to guess too big (azygous), too big/shouldn't have been ballooned (upper right jugular), too small (lower right jugular) and just right (left jugular).

But these guesses are not based on enough information, and I have no medical background.