This Is MS Multiple Sclerosis Community: Knowledge & Support

My wife is considering going for a followup ultrasound in Barrie. We are concerned about clotting. I was present for the ultrasounds that were done prior to and after her CCSVI procedure. It seemed to me that the Zamboni protocol ultrasound procedure looked mainly at the mid-height area of the neck. The results indicate various "flow" problems that are present when CCSVI exists. The 5 criteria for CCSVI are not dependant on the exact location of the flow problems.

My question is, if we get another ultrasound will it be able to definitively indicate if there is clotting or possibly scar tissue rather than just indicating that the flow is inadequate? My wife's angioplasty was low on the jugglers, behind the collar bones. As I recall, the original ultrasounds did not even scan that low. My wife does not have stents.

Bruce.

If don't know the answer to that. If you call Barrie Vascular Imaging, they could probably tell you. Or, Cece or others may know the answer.

Good Luck!

Hi Bruce,

Yes, they should be able to see the entire IJ and evaluate for clot or restenosis. Dr. MacDonald is great and they have a tremendous US experience.

When/where was the procedure done? Stents?

My bf Johns clot was detected by u/s at Dr. Sclafani's office along with the poor flow in the jug.

_________________
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

A d-dimer test could be a useful adjunct, it will show if there is clotting anywhere in the body. Can be done by your general practitioner.

Is she having symptoms, such as lost improvements or pain in the neck, that could be signs of clotting? Clotting can be silent too, so the lack of those symptoms does not mean there nothing to worry about, but the presence of them would especially be worrisome.

I urge everyone to get follow-up ultrasounds and to know that the advice often given, to get them at three months, has been three months too late for some patients here. The doctors are still figuring out what the aftercare regimen and follow-up should be, meanwhile we are living it! I don't know what the schedule of follow-up ultrasounds should be. I just know that I hate finding out about patients with lost jugulars, due to clotting or scarring or too big of balloons causing the vein to collapse or a hypoplastic vein to begin with or any of it.

A venogram is the only way to see for sure if you have a clot. At least it was for me. Ultrasound detected there was a problem, but they were not positive what it was.

CeCe you are so right on the f/u care. John will have u/s at 1 mt 2 mt and then 3 mt.

_________________
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

SoapDiva ...

Can you tell us, what made you suspect (if anything) John had a clot prior to returning to Dr. Sclafani ...

Symptoms of the clot at all?

Thanks,

Rick

Hi Rick! John had some major improvements from week 2 to week 6. No cog fog, no fatigue, mood swings improved, some warming of the hands.

However, no improvement in spasticity, foot drop, atrophy of right hand, extreme unbalance, trouble swallowing, among other things.

At week 6 John started feeling the cog fog, moodiness, fatigue and coldness of hands and feet full force! There was no neck pain to judge there was a clot with John.

By the time of the second procedure John was actually worse than before the first procedure! Scared the heck out of us!

Now, it has been about 2 weeks give or take from 2nd procdure and he is feeling GOOD! His words are he feels almost normal inside. However, outside he still has MS and all that come with it. I believe there is way too much permanant damage to be reversed for him to walk better or for his hands to move like they should.

But, FEELING good is most important to him at this point in his life! He has felt so bad for so long, that feeling good is huge to him.

And remember the clot that formed could not be busted through, so there was nothing done to that side even after cutting his neck and going that route. Dr. Sclafani spent well over 2 hours on that side trying his darndest to get through. So, John had some ballooning on the other side for stenosis of that jugular.

I am just praying there will be no thrombosis this time around and to be sure, Dr. Sclafani wants u/s at 1-2-3 mts. instead of the normal regimine.

_________________
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

Thanks, I'm trying (and I don't know we've done a good job of this as a forum) to understand how people know (if they know) if they have a clot ... or if there's recoil ... or if there's something else.

I've seen a lot of threads talking about thrombosis, but nobody has (in what I've read) had commonalities that show you might have a thrombosis (clot) or you might have something else.

I was hoping there was some clear cut sign - but in your case there necessarily wasn't anything that lead you to suspect thrombosis before going back to Dr. Sclafani? (sounds like getting worse was the sign).

Anyway, all the best, and glad John is feeling better since the 2nd procedure. I was re-reading your 2nd procedure thread to see if I could find anything, but I guess you just told us. So thanks, and all the best!

Rick

Cece, Many thanks for the lead on the D-dimer test. My wife is on Coumadin and being tested every two wks to keep her level between 1 & 2, so we can throw this test in as they are collecting a blood sample anyway.

Salerdog, it's a test that Dr. Dake used on his patients, it seems a logical one but isn't in common use, so if you find it helps you or steers your wife's doctors' decisions at any point, let us know and I'll bring it up more often around here.

I haven't had a d-dimer done myself.

Ultrasound is used as a method to "rule out" DVT: Deep Vein Thrombosis (a.k.a. blood clot). This is a common exam done in hospitals and clinics. We can see immediately the characteristics of a blood clot and follow protocol to rule out or prove a blood clot is present. We evaluate compressibility, color flow and augmentation. It is important to follow up after the procedure to ensure no blood clot has formed.

good point lanie

we are all concerned that we get good ultrasound exams by Zamboni protocol. But that is not necessary for the ultrasound done for thrombus formation. those can be done by most labs that are familiar with DVT. So no reason to travel to great lengths to get an early scan

i use the early scan for patients with stents, and patients with a history of clotting, like john

and still i do not know what the value will be

I had an early scan done today, it showed no thrombus in either jugular. Definitely peace of mind there. It was not a full CCSVI exam.