Post if CCSVI treatment did NOT work for you

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

Postby joanp » Tue Nov 09, 2010 9:27 pm

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Re: Post if CCSVI treatment did NOT work for you

Postby dreams2life » Fri Nov 12, 2010 12:48 pm

pklittle wrote:I am wondering how much of an oddity I am. I had 3 blockages treated with angioplasty this past week, and I did not benefit at all. Not even the slightest improvement.
We hear of so many successes, but just how many are like me that had blockages treated and are the same as before?
No, I have not re-stenosed.. ultrasound the next day confirmed that.


I have over 30 lesions on my brain, primarily in my frontal lobe and I have a cervical lesion on my spine. I had my procedure in India on October 27th. My right jugular was 50% blocked and my left was 60% blocked. My doctor used the largest balloon (16mm) and ulitimately I have a 14X40 Smartcontrol stent deployed in my left jugular. The azygous was normal.

Initially about three hours after the procedure I felt a release in the spasticity of my right lef and I discontinued use of my walker for the next 24 hours. However, upon increased activity I have resumed my walker use. I have experienced a deterioration in my memory and concentration as well as my fatigue levels. My cold sensitivity (I do well in the heat) is heightened. I have increased numbness in both of my legs and an increase stutter in my speech. I have a continuous feeling of light headedness but not dizziness.

I had a 14 hour non-stop flight from India but flew business class so i could lay out and move around. On November 6th during sleep I experienced a sharp pain in my right leg and swelling in my knee. I had a CT scan with contrast performed showing no blockage or clot. The stent was in place but the right jugular was not imaged and I was told that the swelling in my right knee which has not subsided is not sufficient to warrant such imaging. I experience shallow breathing and random spasticity in my abdomen and back and headaches. I have increase tremoring in my right hand upon fatigue.

Not sure where to go from here. But I appreciate a place to at least speak openly about what I am experiencing.

Thank you.
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Postby joanp » Sat Nov 13, 2010 9:34 pm

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Postby Cece » Sun Nov 14, 2010 12:02 am

dreams2life, thank you for posting here, although I wish the procedure and outcome had gone better for you.
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No significant changes for me

Postby andisue50 » Sun Nov 14, 2010 6:58 am

Hi all - I had my angio on October 7th in Florida and was told that they had cleared 3 blockages of approx. 60% in my right and left IJV and azygos. I have not had any symptomatic relief post procedure, other than for a slight improvement in fatigue (but even that may be only in my mind or attributable to the fact that I'm not working now and stress is reduced).

I posted my before and after videos on YouTube and you can find them if you search for Msandisue

Now I'm looking for a place locally to have a follow up doppler. I have the doppler that was done properly a day before the procedure and want someone to compare them to be sure my flow is good and veins are still open.

I posted a thread in the main forum of CCSVI asking about a list of facilities in the US doing the doppler according to the correct protocols so if anyone has such a list I'd love to know about it. If not, this is a project someone hopefully will be motivated to start. I'd do it myself but I don't have any information - nor do I know how do go about getting it? Is there a national society for ultrasound technicians?

As more people have angioplasty, follow up is crucial. I'm hoping this list exists and is being added to but if not, how would we start one?
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Postby Sasani » Tue Nov 16, 2010 3:19 pm

I had my procedure on September 13th, and sadly saw no changes at all. In fact I have continued to progress and can no longer even feed myself. But.....if I had not had it done I would always be thinking "what if".
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Postby Cece » Tue Nov 16, 2010 3:47 pm

Sasani wrote:I had my procedure on September 13th, and sadly saw no changes at all. In fact I have continued to progress and can no longer even feed myself. But.....if I had not had it done I would always be thinking "what if".

This is hard to hear, I am sorry that it did not improve things. Your attitude sounds like a positive one. Will you have a follow-up ultrasound doppler to check for restenosis?
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ccsvi

Postby ven » Wed Nov 17, 2010 6:28 am

hello to all i made the ccsvi in May and went back again last month to check they are still open...it didnt help a littleam still same only my poket its broke but ms sameeeeeeeeeeee
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Postby CCSVIhusband » Wed Nov 17, 2010 6:38 am

7 months of the same ... maybe that's not a bad thing.
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WHO IS GETTING HELP

Postby elliberato » Wed Nov 17, 2010 8:11 am

can someone tell me who is actually getting relief?????????? I had this done in March and went from fully functional witha limp to a walker to a wheelchair to a scooter????
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Postby dreddk » Wed Nov 17, 2010 5:50 pm

I wonder if the fallibility of current scanning methods is part of the issue. There appears to be a large margin of error depending on method (MRV, Doppler, Venography) and operator (Doppler in particular).

As a result its probibly not surprising that a number of people aren't experiencing relief or stability.

Throw into that the probibility of re-stenosis/blocked stent and it looks like a bit of a lottery.
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Postby CCSVIhusband » Wed Nov 17, 2010 8:07 pm

That's the first thing Dredd and I agree on.

I don't think there is any real clear imaging protocol yet - especially one that will show everything ... each doctor uses an ultrasound, but they are far from a clear picture (not like looking at an x-ray and a broken bone) ... the MRV is a still picture trying to show flow for the most part (though, it can show collaterals, which indicate that something is wrong somewhere in that area).

And if the doctors don't know where to look when going into the veins, it's easy to see why doctors might miss a lot.

I'm sure a lot of people who have got "no results" have had something missed (beyond those who got results then had restenosis or whatever).

Just my thoughts ...

(so does that make me a skeptic of the scanning protocols - which are far from standardized admittedly) That's why you have to go with a doctor with experience, and go as local as possible for follow-up care (like everyone says).
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mixed results

Postby Rosegirl » Thu Nov 18, 2010 6:06 am

I agree that the scans are still a work in progress.

I think the IR's skill is even more important, and these days, at least for some, even less reliable.

I was treated in July at Georgetown University Hospital. They did venograms for 30 patients. Few had good results and those didn't tend to last. As a result, they stopped doing venograms. They will resume when they can find a protocol that works better. That means they might be back doing procedures by summer.

Add folks who just found an IR who assumed, as so many of our more experienced CCSVI providers originally did, that this was just standard vein stuff. Or maybe they went to one of the "biggies", but they were in the first part of their learning curve -- which is still "curving".

My venogram found and treated my azygos that was "extremely stenotic and occluded distally". Although that vein was opened, I had little improvement. And judging by the fact that my feet are becoming more purple, I suspect that there might be some lessening of whatever they did.

I fully intend to have another venogram. But the next one will be with an IR that has done more than 75 CCSVI venograms. And that will also mean that there was time to see who restenosed really quickly.

I am lucky that I can afford to wait - and that I can afford another venogram.

I am also grateful to all who will be treated by my doctor before me!
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Postby pklittle » Thu Nov 18, 2010 9:37 am

pklittle wrote:
pklittle wrote:
pklittle wrote:My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized.

*UPDATE*
8/27/2010

Consulted and tested by a LOCAL FSIR (yeah!) on 8/24/2010. He did a thorough job using venogram to check my lower veins for MT and also the IJR, vena cava, illiac (don't know all the names). They entered from both sides. All was flowing great except for my left IJR which is a whole mess of collateral veins that he couldn't get the catheter by to check any further up or do angio. They provided me with a DVD of the entire test and written report as well.
The sad part is, nothing can be done. I guess I'm done. CCSVI got me.


*UPDATE*
9/25/2010

I have learned that my second venogram report is INCORRECT. The doctor was in the WRONG VEIN... thought he was in the left IJV when in fact he was in a smaller vein next to it. Sooooo, my left jug is not as messed up as I have been thinking it was for about a month.
Someone stop this merry-go-round. I wanna get off.


**UPDATE** 11/7/2010

Had an ultrasound of my left jug last Friday. It confirmed that the doctor was NOT in the wrong vein in my followup venogram. So what this means is my left jug has restenosed and grown collaterals since June.
I don't have a clue at this time what the next step is. I'll keep you posted.


**UPDATE** 11/18/2010

Now I will have an MRV. There are still doubts regarding the state of my left IJV. Sometimes these things are not cut and dried, particularly when more than one doctor is involved. In hindsight I wish I had not started down this road.
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Postby MS_HOPE » Thu Nov 18, 2010 11:51 am

pklittle wrote:My initial venogram and angioplasty on 3 areas was done in Albany, no benefits realized. .....

**UPDATE** 11/18/2010

Now I will have an MRV. There are still doubts regarding the state of my left IJV. Sometimes these things are not cut and dried, particularly when more than one doctor is involved. In hindsight I wish I had not started down this road.


PK, it saddens me to read this - so sorry this hasn't worked for you. Hang in there.
CCSVI:  Making Sense of MS
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