CCSVI - Procedure and NO stenosis

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

CCSVI - Procedure and NO stenosis

Postby adelaidegirl82 » Mon Feb 27, 2012 11:25 pm

Quick timeline -
Stenosis found through doppler - March 2011
CCSVI Treatment - May 2011
Inverted valves
Reflux =
Both Jugulars Ballooned
Had some symptom Improvement

September 2011 - Minor relapse
Heavy right leg

2nd Procedure.
CTV with contrast Dye - Feb 2012 No major/minor stenosis
Venogram Performed - No Stenosis Found
Details of operation
R1JV and LIJV 10 x 40 Balloon Inflation

I do not understand for the life of me how I cannot have a stenosis anywhere?

Is this to do with my inverted valves?

I am so confused I feel like I have wasted money and my families time.

Has anyone has this happen?

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Re: CCSVI - Procedure and NO stenosis

Postby cervocuit » Tue Feb 28, 2012 3:04 am

adelaidegirl82 wrote:I am so confused I feel like I have wasted money and my families time.
Unfortunatly, i think it’s the same for everybody. It just takes more or less time to people to figure it out because MS is very capricious and the illusion is maintened by internet.
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Re: CCSVI - Procedure and NO stenosis

Postby DougL » Tue Feb 28, 2012 5:29 am

adelaidegirl82 wrote:I am so confused I feel like I have wasted money and my families time.

you are talking about your health. that is never a waste of time or money. is it possible something was missed in your two procedures?

IMO, CCSVI is real and treating it is a good thing. however, it will not cure your MS overnight. my partner has over 20 years of MS damage. unblocking her veins is just the start.

there is also the hope that by fixing her veins, the progression of MS is slowed or stopped. only the future can tell us if this is true.

sorry you are feeling confused and good luck in the future.
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Re: CCSVI - Procedure and NO stenosis

Postby 1eye » Tue Feb 28, 2012 9:55 am

I am not a doctor. One of the people I asked to treat me said, sorry, no dice, not until we know there is evidence. I could not get it even by offering to pay cash. They went on to do studies themselves, and are now offering it. I had never heard of them until I started looking through scientific books and was convinced of someone who was a vascular expert. They hadn't heard much about CCSVI before I called.

If I had your experience, I might think, well of course I have inverted valves. All they are is flaps of tissue, and you just ran a catheter the wrong way (up), against the action of the valve. And ballooned it as well. If it wasn't inverted before, I'm not surprised to hear that it is now.

But if they had done that damage, here would not be an initial benefit that gradually disappeared. What I would expect would be an initial worsening that either stayed the same or got better. Not what I had. But everybody is different, and today, your "MS" may be a lot better or a lot worse than mine. That's because it is a disease with a course. Has it gotten worse, or better, or is it about the same? Before angioplasty, was it getting worse faster, slower, or about the same? With me, even discounting how much better I felt for the first 6 months, after 18 months I am still better than I was. Now getting worse, but a lot slower. People who would not care much one way or the other either way, say I have improved.

Your mileage will definitely vary.
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Re: CCSVI - Procedure and NO stenosis

Postby Cece » Tue Feb 28, 2012 12:03 pm

So you had stenoses, they were treated, and the treatment was durable and lasting, which is what we want. But you had a relapse in the fall and thought it might be due to restenosis. Since it's not restenosis, what could explain that relapse?
* could be that even with CCSVI having been treated, MS is a separate disease that is ongoing
* could be that there is still some CCSVI that was not treated, such as in the renal vein or azygous vein, that could not be found by that particular IR or without IVUS
* could be that iron build-up remains in the brain and the immune system will still attack to clean that up (but that no further iron build-up is happening)

I wish there were answers. Are you SP, RR, or PP? It could be that treating CCSVI has a bigger impact on MS in some subtypes than in others.

Did any of the symptom improvement from the first procedure last?

Inverted valves is rare, from what I understand. If your IR is saying you had inverted valves, my guess is that you had the usual thickened fixed valves, and that your IR is inexperienced, and that being inexperienced he missed something. But that is all assumption on my part! And if you tell me your IR is one of the big names, I'll be embarrassed for having assumed.

Somewhere between 10 - 30% of patients have no improvements. I wonder if it could be that people who have lower-grade blockages have ongoing reflux issues but not the venous congestion, so they don't get to experience the relief of congestion, but they still benefit from the procedure.

I am not a doctor either. Wish the procedure had done more for you.
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Re: CCSVI - Procedure and NO stenosis

Postby HappyPoet » Tue Feb 28, 2012 1:45 pm

adelaide, some thoughts for you...

1. Whatever your valves were, they have since been ballooned twice--you gained some improvement, and now have proper blood flow. :)
2. Your latest report says you have no stenosis which is actually terrific news! The first venoplasty may have done much of the work to press back the valves, and the second venoplasty may have properly finished the job. :)
3. Am currently in a relapse that started 9 months post-venoplasty, and I have not restenosed--my improvements and 'no stenosis' status are holding strong. :)
4. Even though you have no stenosis now, continue to follow your doctor's schedule for follow-up US appointments and anticoagulation regime so you can maintain your 'no stenosis' status. :)
5.Relax, enjoy your improvements, and believe you did the right thing. :)

Best wishes
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Re: CCSVI - Procedure and NO stenosis

Postby MarkW » Tue Feb 28, 2012 1:54 pm

adelaidegirl82 wrote:
I do not understand for the life of me how I cannot have a stenosis anywhere?
Is this to do with my inverted valves?
I am so confused I feel like I have wasted money and my families time.

Hello Adelaidegirl82,
You had lots of thoughts from Cece and HappyPoet. I add just one - you may have valve problems in veins not checked or webs or septums which are best seen using IVUS. Take a look at this thread for more info:
I have not received info that IVUS is being used to investigate CCSVI in Australia. Getting treatment for the problems your IR has detected was worthwhile but you are likely to need a gold standard diagnosis of lots of veins.

Kinds regards,
Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
CCSVI Comments:
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Re: CCSVI - Procedure and NO stenosis

Postby adelaidegirl82 » Thu Mar 01, 2012 5:01 am

ok so tonight I am sitting in bed with a really bad headache - has anyone had this before or have there been reports of it?

I dont know if there are any "big names" in CCSVI in Australia.

I do agree that CCSVI and MS may be two totally different things.

I do know after my last procedure I do know I got a lot worse before I got better. I suffered a lot of pain and now I basically 98% pain free. I am battling a lot of brain fog ( which is permanent with me - gets better at night ) and also dizziness. I do know the heat this year has knocked me around alot. I have also tried to alter my dose of LDN to 4.5 but that knocked me off my feet too so now I am at a steady 3.0 mg

I also lived in the USA for 2 years in upstate New York for one summer and MAY have been bitten by a tick, I don't recall anything and I also don't suffer from many or bad colds . My doctor said my symptoms don't present as Lyme. But I don't believe him and have ordered a blood test kit from Igenex for my blood to be shipped over.

So many questions !

Granted I do take a lot of supplements also. COQ10, Magnesium, L'Carnitine, fish oil, vitamin d 5000 IU a day ( low vitamin d) and a whole bunch more.
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