How do you define CCSVI success?

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

How do you define CCSVI success?

Postby Rosegirl » Thu Apr 21, 2011 8:07 am

Everyone hopes for that "youtube moment" where they waltz out of the hospital right after their CCSVI treatment. Does it always work like that?

If you have had problems walking and have been treated, did you have to go through extensive physical therapy to regain function? Was it a slow rebuilding process?

Two days ago,I had a second venogram where five blockages (70-95%) were treated. I'm barely a little less stiff, so I'm still wall walking, preferably holding on bilaterally. Do I need to be patient and get some physical therapy ASAP?
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Postby bruce123 » Thu Apr 21, 2011 10:02 am

My wife walks with a cane and has significant balance problems. She did not notice anything immediately following her treatment last December. Her improvements began to be noticeable after a few days. She improved steadily but slowly over the next couple of weeks. There were significant improvements to her balance, walking, fatigue, speech and most importantly, her nerve pain. These improvements lasted only two months. Her fatigue is still much improved but most of the other gains have disappeared.

It seems to me that there are as many different stories as there are people who have been treated, everything from YouTube moments to no benefits. My wife seems to fit somewhere in between.

My wife did not have any physiotherapy but I would think that it could only help.

Good luck and I hope your improvements last.

Bruce.
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Postby munchkin » Thu Apr 21, 2011 11:25 am

My improvements started a couple of days after the procedure. Balance. heavy feeling in legs, foot drop, numbness in fingers; these all started to go away bit by bit over 2 weeks.

Then one vein started to collapse and the improvements started to fade. I still have some minor improvements but most of them have gone.

Bruce123, do you know if your wife restenosised (sp?)?
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Postby bruce123 » Thu Apr 21, 2011 11:42 am

munchkin wrote:Bruce123, do you know if your wife restenosised (sp?)?


We have struggled with what to do about that question. We are in Canada and returning to Albany is possible, but not easy. Going to the only Canadian location that we can trust for CCSVI scanning (Barrie, Ontario) is also an option but is quite a drive and is still expensive.

After much research I realized that the CCSVI scanning would only tell us if the FLOW was bad but it wouldn't tell us if there was clotting. Clotting is what we are worried about. Further research found that scanning for clots is done regularly for varicose veins in the legs and this test would be covered by our government health insurance and done locally. Then I found out (thanks Cece) that there is a simple blood test for clots, called the d-Dimmer test.

Our next step was to get in to her regular doctor and get a referral for scanning and a blood test. The doctor told us that scanning for clots in the neck is not normal and may be difficult for the technicians therefore we should start with the blood test. My wife had the blood test last week and yesterday found out that the results a "slightly abnormal". She went today for a second blood test. If it is positive then we will have to try the ultrasound.

It is weird because I hope it is only restenosis so that there are no complications due to thrombosis. But I also think that if is is thrombosis and she was put on drugs that were successful at breaking up the clot, maybe her improvements would return without another angioplasty.

I wish this was all as simple as we first thought it was 18 months ago.

Bruce.
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Postby drsclafani » Thu Apr 21, 2011 11:57 am

bruce123 wrote:
munchkin wrote:Bruce123, do you know if your wife restenosised (sp?)?


We have struggled with what to do about that question. We are in Canada and returning to Albany is possible, but not easy. Going to the only Canadian location that we can trust for CCSVI scanning (Barrie, Ontario) is also an option but is quite a drive and is still expensive.

After much research I realized that the CCSVI scanning would only tell us if the FLOW was bad but it wouldn't tell us if there was clotting. Clotting is what we are worried about. Further research found that scanning for clots is done regularly for varicose veins in the legs and this test would be covered by our government health insurance and done locally. Then I found out (thanks Cece) that there is a simple blood test for clots, called the d-Dimmer test.

Our next step was to get in to her regular doctor and get a referral for scanning and a blood test. The doctor told us that scanning for clots in the neck is not normal and may be difficult for the technicians therefore we should start with the blood test. My wife had the blood test last week and yesterday found out that the results a "slightly abnormal". She went today for a second blood test. If it is positive then we will have to try the ultrasound.

It is weird because I hope it is only restenosis so that there are no complications due to thrombosis. But I also think that if is is thrombosis and she was put on drugs that were successful at breaking up the clot, maybe her improvements would return without another angioplasty.

I wish this was all as simple as we first thought it was 18 months ago.

Bruce.


bruce, please keep us informed about your wife's venous issues. We are all worried about thrombosis, but the ultrasound often do not show it.

with regard to ultrasound for thrombosis, it does not need to be any special technique. When my patients are concerned about clotting, we usually get a local "compression" ultrasound of the neckj. If the vein is not clotted, the vein indents when pressed upon by the ultrasound probe. if there is clot in it, it does not indent because the clot isnt normal blood.

so, WHEN CLOT IS THE CONCERN, COMPRESSION ULTRASOUND not ZAMBONI ULTRASOUND IS INDICATED AND IS GENERALLY LOCALLY AVAILABLE AT A RADIOLOGY DEPARTMENT OR VASCULAR LABORATORY

S
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Re: How do you define CCSVI success?

Postby drsclafani » Thu Apr 21, 2011 12:00 pm

Rosegirl wrote:Everyone hopes for that "youtube moment" where they waltz out of the hospital right after their CCSVI treatment. Does it always work like that?

If you have had problems walking and have been treated, did you have to go through extensive physical therapy to regain function? Was it a slow rebuilding process?

Two days ago,I had a second venogram where five blockages (70-95%) were treated. I'm barely a little less stiff, so I'm still wall walking, preferably holding on bilaterally. Do I need to be patient and get some physical therapy ASAP?


sorry, rosegirl

five stenoses! how many did you have before the first treatment?
did you get an MRI? Are you having a relapse?
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Postby bruce123 » Thu Apr 21, 2011 12:05 pm

drsclafani wrote:so, WHEN CLOT IS THE CONCERN, COMPRESSION ULTRASOUND not ZAMBONI ULTRASOUND IS INDICATED AND IS GENERALLY LOCALLY AVAILABLE AT A RADIOLOGY DEPARTMENT OR VASCULAR LABORATORY

S


Thank you Dr. S. I appreciate your input very much.

I have mentioned here on TIMS a couple of times that Zamboni protocol ultrasound is not required for diagnosing clots. I don't think most pwMS realize this. It is an incredibly important detail, especially for Canadians who think they have to travel out of country to be checked.

Bruce.
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Postby bluesky63 » Thu Apr 21, 2011 12:27 pm

All right, to further complicate things, the d-dimer is also high in some people who have MS when they are having a relapse -- and also in other conditions. So a high d-dimer does not necessarily mean that there is thrombosis.

a few links

http://en.wikipedia.org/wiki/D-dimer

http://www.labtestsonline.org/understan ... /test.html

http://www.ncbi.nlm.nih.gov/pubmed/18258432

http://brain.oxfordjournals.org/content/126/7/1590.full

It's from 1969, and there's no abstract, but this is intriguing:

http://www.ncbi.nlm.nih.gov/pubmed/4886662

i am copiously linking. enough. the point is, bruce, best wishes in an unclear situation in which people like us are the ones helping to bring clarity. i hope everything turns out well.
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Postby 1eye » Thu Apr 21, 2011 7:03 pm

They say it is no longer available for purchase.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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CCSVI success

Postby MarkW » Fri Apr 22, 2011 5:03 am

My reason for having balloon venoplasty was simple - I hoped to stop or slow down my MS progression. This would be unusual after 19 years of MS.
My MS progression has definitely slowed down. Time will tell if progression has stopped. This is my treatment success for CCSVI syndrome.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Rosegirl » Fri Apr 22, 2011 5:51 am

Mark,
How long ago were you treated? Did you see any improvement right afterward? Did anything improve eventually?
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Postby Donnchadh » Fri Apr 22, 2011 6:27 am

For me, just to stop further progression of symptoms (after 20 years!) I have to consider it a success. Some of my symptoms have completely vanished (like the "banding" while walking), some better, and some the same. Nothing is worse.

My younger brother confided to me that he observed that I was rapidly deteriorating but didn't want to say anything to me about it until after my last procedure.

Donnchadh
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Postby Rosegirl » Fri Apr 22, 2011 8:14 am

Donnchadh,

What's "banding"? And did you see large improvements at first and then smaller ones later? Or just small ones eventually? Most of the IRs I've heard said that if you don't see big stuff within two days, you probably won't see anything.

I'm hoping now that more people have been treated, maybe there's a longer, slower improvement curve that some folks see.
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Postby 1eye » Fri Apr 22, 2011 8:33 am

It's definitely complicating to think a blood component usually a marker for thrombosis could also show some MS activity, unless, perhaps the blood vessel dysfunction might be related somehow to both? There is the fact that when blood slows down, thromboses can form, and there was something in one of those papers about hypoperfusion, wasn't there? I dunno.

Anyway, do exercise as much as you can. I have the blessing of a person helping me whose health is all self-made. She had a car-accident as a teen and had to relearn how to walk against terrible odds. She did a lot of exercise just for its own sake - did not get glamor or fitness or any of the usual - just ability. If anybody can help me learn to walk again it will be her.

Balance, if my experience is like yours, will continue to be an issue, but you can learn to do it, slowly. I wake up and wonder if I can do something, and some days, I can! Lately, bending over and picking things up has been less frightening for me. (Not recommending this for anyone else - it's just my current horizon.)

Falling used to be a really big problem for me, as you can ask all my friends about. Lately, though they're all scared off by now, I hardly fall at all, and only when it's pitch dark and I should be in bed. Even then, touch wood, I haven't been hurting myself like I used to. Is this because I am smarter, more scared, or luckier? I think I am getting less klutzy.
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Postby Donnchadh » Fri Apr 22, 2011 9:07 am

Rosegirl wrote:Donnchadh,

What's "banding"? And did you see large improvements at first and then smaller ones later? Or just small ones eventually? Most of the IRs I've heard said that if you don't see big stuff within two days, you probably won't see anything.

I'm hoping now that more people have been treated, maybe there's a longer, slower improvement curve that some folks see.


"Banding" usually is meant to refer to when you experience a sudden muscle contraction around the abdomen area.

Whenever I was standing at the instant I attempted to start walking, "banding" would occur. I had to force myself via will power to keep going and gradually the contraction would release.

This particular symptom first appeared about ten years ago, and gradually became more pronounced.

Amazingly, after my December CCSVI procedure, I have not had a single recurrence of "banding."

I think that most of the improvements showed soon after the procedure, although lately I have been feeling even better, so knows?

Donnchadh
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