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My left IJV is clotted all the way up, my right IJV is approx 85% clotted at the J2 location.
I lost all of the benefits I had gained from the original angio and have now lost more sensation in my hands, more severe spasms in my left leg, unable to determine placement of arm unless movement is greater than 15%, unable to maintain posture when I stand in one location, jerky eye more jerky, left knee collapses on a regular basis, hands are stiff and weak. I bounce off the walls all the time and the distance I can walk has reduced to about 1/4 of what it was prior to the original angio. I'm sure there are more but lets just say I progressed about 2 or 3 years in under a year, this is compared to how I was progressing prior to the angio.
No MRI but many ultrasounds.
I am SPMS.
I am on Pradax and low dose aspirin.

I am diagnosed PPMS, have had multiple procedures to un-clot my left IJV. I have a covered stent inside the standard mesh stents. At 4 months I am clot free. All of my symptoms are related to my right side. Night time leg spasms have increased the last few weeks. Still have drop foot on my right side and right arm not much good. Other than that I still feel more alert and awake, much better heat tolerance. I wonder how I would feel if I could sleep. The leg spasms only happen at night.

Two years ago, I would have been incapacitated by the amount of sleep I am getting due to the leg spasms. Now I feel tired, but not the MS fatigue I used to feel.

JCB wrote:I am diagnosed PPMS, have had multiple procedures to un-clot my left IJV. I have a covered stent inside the standard mesh stents. At 4 months I am clot free. All of my symptoms are related to my right side. Night time leg spasms have increased the last few weeks. Still have drop foot on my right side and right arm not much good. Other than that I still feel more alert and awake, much better heat tolerance. I wonder how I would feel if I could sleep. The leg spasms only happen at night.

Two years ago, I would have been incapacitated by the amount of sleep I am getting due to the leg spasms. Now I feel tired, but not the MS fatigue I used to feel.

I too am unable to sleep because of muscles remaining contracted all the time. They only medication that helps me is Zanaflex. It is the only drug that DOES NOT make you weaker, but it can make you sleepy. I take 1 at bedtime and it does help.

usually CCSVI treatment results in bad valves or narrowing not clots.

Clotting happens quite frequently where there are stents.

I've heard the term 'bad valves' as what we have to start with, prior to CCSVI treatment. Malformed, thickened, flap-like, immobile, bad valves.
Dania is right: clotting is a complication that has happened to many here, and even those who did not have stents. It is why most IRs prescribe an anticoagulant such as Pradaxa for a few weeks post-treatment while the vein is healing. With the right techniques, it is hoped that clotting can be minimized. Right techniques might mean the use of IVUS, the prescribing of anticoagulants, and the 'just-right' sizing of balloons, neither too small to fail to do the job or too big to damage the vein beyond salvage. IRs have a harder job than I originally knew, when I first learned of all this.

How high up the clots are in the jugular is a matter of concern, because if there is even two inches preserved at the top of the jugular, the patient is a possible candidate for vein grafting, and we know of a US patient who had that done, and a few more in Italy.

Munchkin's circumstances concern me greatly. I wish there were easy answers. An 85% closure beats a 100% closure. Do the IRs say not to gamble and leave it be, or is reopening it and stenting the best choice?

Hi JCB
How often are you getting the stent looked at? Do you have both IJV's open?

Cece is right, it has turned out to be more complicated than originally thought.
I'm waiting to discuss stents with my IR and what he thinks the next step should be. We tried to open the lijv and ballooned the rijv with the hopes that it would stay open knowing that it might/probably go back to the stenosised state. if the he could open the lijv; stents would be in without question and I would hold off on doing anything to the rijv.
The lijv seemed to have more impact overall. My eyesight stopped jerking about for around 2 days, the noise in my ears was gone for about 3 days, the stiffness was gone for approximately 1 month, foot drop/dragging my left leg was gone for about 2 months. I knew when the vein started to close, I had originally thought my eye and noise in my ears were just flukes and not related to the angio. But, looking back it all makes so much sense. I just wish the neuro's would open their eyes.

You might be a candidate for jugular reconstruction. It sounds like you have a fairly good medical team working with you to at least keep on top of what is happening, are you part of a study?

The right lobe on my thyroid had two nodules within 3 months of my initial procedure and I now have a third nodule. The biggest is just 6mm and I don't feel any of them yet. I don't have any nodules on the left side either, it's interesting on how and where the changes are occuring.

My voice changed and now my vocal cords are thickening (within the last 6 months), which the dr's here attribute to acid reflux. Funny thing is I don't have acic reflux and I'm pretty sure it's blood flow related.

How long have you been on the blood thinners? Do your Dr's want you to go off of them?

I hope the U/S continues to show good things for the rijv.

I will get checked every 2 - 3 months til...? Not sure when the current regimen will change, I was hoping to get off the blood thinners but my Dr. thinks I should stay on them for awhile. Both IJV's are currently open.

That's fantastic that both are open.

Hi LR,

Haven't spoken with you in ages. Happy new year!

I'm still 100% clotted in my right ijv, and have been since Dec09. My left is open as of 6/10 as is my azygous as of 4/11. I have been stable a long time, although I'm sp, and in a wheelchair and can't walk. My goal was to not become bedridden and in a diaper, and so far so good. I commented to my husband the other day that I dont feel ms-y anymore.

I hope your drs can help you. There are some cutting edge laser (I think) techniques being used by Dr. McGuckin in the US to blast thru clotted jugs. He did one of my friends who has been clotted for over a year, and she's seen improvements. If your on Facebook, she's Carol Schumacher. If you want me to connect you, let me know thru a pm or friend me on fb.

Michelle

Also I'm sure Dr Sclafani would answer any queries about how to deal with your clot...

This is an email I received from the man who had a vein bypass at the Mayo.

"Hi Jan
Seems the risk of venous clotting form CCSVI is much higher than people were realizing, and even after I went through the whole vein reconstruction I have clotted again. Dr. Stone has refused to do it again, so I am going back to see Dr. arata in the hospital next week, same day as you go in, to see how much has clotted and to reopen again using the Bayliss wire and TPA.
For me, the change is night and day. I clotted again about 4-5 weeks ago and I could feel the differences in my legs right away. Affects bladder, bowel, legs, etc. in amazing ways. I’ll be posting a blog update sometime in the next week or so.
Mike"

Oh, no! The poor guy.

Yes, he had a vein replacement. I think it was back in August and, if it clotted four weeks ago, it lasted until early January?

I looked for information on likelihood of clotting in vein grafts. This is for coronary artery grafts and shows 11% - 29% of clotting. And that's in a high-flow artery, not a low-flow jugular that shrinks to 10% of its size whenever you stand up.
http://www.hopkinsmedicine.org/news/med ... ss_surgery

He says previously known risk factors were the size of the vein to be bypassed, with veins smaller than 1.5 millimeters having twice the failure rate of larger veins, and, similarly, vein grafts with slower blood flow having a two to three times greater likelihood of failing.