Follow up -- when where and how

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Follow up -- when where and how

Postby Rosegirl » Sun May 15, 2011 8:26 am

We all know how important follow up is. But I, for one, don't know WHAT it is.

Are you supposed to call your IR when it's time (and how often is that?), or do they call you to see how you're doing?

Is it a phone call and if things are better, that's it for your follow up?

What is there is no change?

Or, sadly, what if things are worse? Is there any type of scan or treatment?
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Re: Follow up -- when where and how

Postby dania » Sun May 15, 2011 9:19 am

Rosegirl wrote:We all know how important follow up is. But I, for one, don't know WHAT it is.

Are you supposed to call your IR when it's time (and how often is that?), or do they call you to see how you're doing?

Is it a phone call and if things are better, that's it for your follow up?

What is there is no change?

Or, sadly, what if things are worse? Is there any type of scan or treatment?

What great questions! What country do you reside in? As thay makes a difference in the answers. Having tried five times I can tell you that if you have the procedure and get improvements and they disappear after sometime that is when you need contact your IR who did the procedure. A sign you have restenosed, or possibly developed a blood clot, or scarring, or intimal hyperplasia (takes 3 months or longer to develop that after the treatment) Hopefully he or she is close by. Only a venogram can accurately tell you if you have a problem.
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Postby EJC » Sun May 15, 2011 9:28 am

The EHC in Glasgow/Edinburgh include a 6 month doppler scan as part of the initial treatment price.

All patients undergo this scan, 6 months makes sense as the body has had time to adjust and time to restenos if that's going to occur.

This is undertaken as much to compile statistics as it is to check the patient.
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Postby HappyPoet » Sun May 15, 2011 9:39 am

Hi Rosegirl (pretty name!),

Dania mentioned lots of important points -- to those, I'd add that my understanding is that a post-procedure ultrasound will show if there is still flow and/or if there is an occlusion (partial or full). Until there is a consensus statement (i.e. put out by ISNVD), every IR is different in their post-procedure follow-up protocol.

Some questions to ask one's IR regarding follow-up are: 1) How often should an US be performed? 2) What is the anticoagulation protocol, if any? 3) What should be done if improvements start disappearing? and 4) How can one's IR be contacted for questions?

Best wishes.

:D
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Postby Rosegirl » Sun May 15, 2011 10:35 am

I've had two venograms. The first was when Georgetown University was undertreating people in July 2010. I got no improvement. The IR didn't want to see me after the procedure. The neurologist, who was in favor of the so-called trial, did one follow up visit. He concluded that I didn't have MS -- I had a vascular problem. So that meant he wasn't the one to follow up.

I had a second venogram at another location almost a month ago. The IR found 5 blockages in both IJVs, the azygous, and 2 other places. The veins were blocked from 70 to 95%. Again, there's still no improvement. I've been told to be patient (easier said than done), that it can take up to six months to see changes. But there's been no discussion of what follow up entails. I hate to waste time and money on unnecessary tests, so do I just cross days off the calendar for the next five months and then ask if there's anything else that can be done?

I'm near DC and was treated locally both times so it's easy to be followed up if someone said how that should happen.
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follow-up

Postby zinamaria » Sun May 15, 2011 10:42 am

Yes! Great questions as I have been wondering myself...I will see Dr. Cumming 28/29th of June. Then back to NM where I was told by the cardiologist (where my husband is having some tests done), that he can do follow-up for me...he knows about CCSVI and is very open minded about it, has a female colleague with MS who just had treatment in California with PI.
I asked him about an IR doing it, he stated not a chance here in Santa Fe, but they have the equipment, does this mean just a sonogram?? to check the veins? His technician he says is best in the state.

Should I ask Dr. Cumming to contact him so he knows what to look for?? when I return (post Liberation, if there are problems).
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follow-up

Postby 1eye » Sun May 15, 2011 11:11 am

There are a lot of knowledgeable people on this forum, Cheerleader, Cece, Dr. Sclafani, others, some of whom will always respond to your pm.

Go local with someone you trust who knows a lot about CCSVI and is not prejudiced about it. Personally I would only accept the opinion of someone either trained in Ferrara or trained by a Ferrara trainee. That is a personal decision, but there is no magic to diagnosis of CCSVI. I have seen it done by several people and it is just a very subtle use of a complex piece of machinery. It is not a needle in a haystack, either.

You've just got to know exactly what to look for and how to find it. Angela, at Dr. MacDonald's lab, is very quick and thorough. I feel more comfortable in the hands of an MD, who has more background in anatomy and knows what is inside, in a more touchy-feely kind of way, but that is just me. I'm sure you can be very well trained, when it is so strictly controlled.

I am not clear on any recent revisions to what indicates CCSVI or not. Deep cerebral veins may be tricky, but if the right Doppler probe with a higher frequency of sound waves is necessary, that does not mean they should be ignored. That is not for this topic, I guess, but I think it is important.

Myself, my gut feel tells me that stuff higher up may be fixable by repairs lower down. I still want to know, now, and in future follow-ups, if I am having reflux that makes it high up. So I am glad to know about my deep cerebrals.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby dania » Sun May 15, 2011 11:42 am

Seeing as you were told you do not have MS but a vascular problem. maybe you should see a vascular surgeon.
On another note, have you had a MRI to confirm you have or do not have MS?
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Re: Follow up -- when where and how

Postby mavis » Sun May 15, 2011 3:43 pm

Rosegirl wrote:We all know how important follow up is. But I, for one, don't know WHAT it is.

Are you supposed to call your IR when it's time (and how often is that?), or do they call you to see how you're doing?

Is it a phone call and if things are better, that's it for your follow up?

What is there is no change?

Or, sadly, what if things are worse? Is there any type of scan or treatment?


These questions should be asked BEFORE any treatment IMO. We should be asking questions regarding the procedure, as well as the pre and post procedure protocol when deciding where to have it done.

Normally, your IR tells you when to have the follow up ultrasounds done and what to look for. Usually, these USs are done per Zamboni protocol to check if you still have CCSVI satisfying criteria, and usually they are at 3mo, 6mo, and 12mo intervals. Is there a clinic with trained people to do this in your area?
Sometimes your IR might want you to have just a compression US to check for clotting for example, 1 mo after the procedure.
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Postby ozarkcanoer » Sun May 15, 2011 4:38 pm

Follow up is very important. I did not have follow up soon enough and as a result I ended up with an occluded stent. When I did have follow up I initiated it, unfortunately. My procedure was in Baltimore but I had a follow up utlrasound at home in St Louis. At that time the stent in my left IJV was 80% occluded. That would have been fixable relatively easily. My Baltimore IR told me that he could insert another stent inside the first !!! However when I finally was treated in Baltimore the stent was completely occluded and not treatable, at least with simple venoplasty and stenting. So I urge all CCSVI patients to be very proactive with follow-up. Pin your IR down as to how soon you should get follow up. Get a date as to when and where. Get a prescription and/or appointment if you need one. And good luck !!!

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