follow up after ccsvi treatment

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

follow up after ccsvi treatment

Postby tiredloulou » Fri Dec 10, 2010 1:02 pm

I have a great family doctor, supporting my decision on my ccsvi treatment

being from Ontario Canada.............we all know, I had to go out of country for this
I am now trying to get a follow up ultra sound doppler

They have contacted me, that they do not know how to do the Zamboni protocol

so she cannot book my app't until she speaks with the doctor??
this is after recieving a simple request from my doctor, to have a doppler ultra sound, let JV, stent
she wanted to know, why, I did not go back to the states to have it done, since this is where I had my ccsvi

I politely told her, I have paid my taxes, for too many years, which includes my health coverage, like everyone else........

this all took place in a well know vascular center, in Niagara Region,
Niagara falls Ont.

follow up on ccsvi not being taken care of by their province's.. health coverage
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Postby Cece » Fri Dec 10, 2010 1:28 pm

Best wishes with getting it done. What makes me sad is that, while you will (cross fingers) push through and get your doppler, others will give up after the initial resistance. People have to both recognize how important the follow-up care is and be assertive enough to get it in a hostile environment (or wealthy enough to return to the states to get it).

There is a learning curve with the dopplers, too. Is there any other alternative besides an inexperienced seemingly-hostile doc? :(
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ccsvi follow up

Postby tiredloulou » Fri Dec 10, 2010 2:36 pm

oh, I am not finished with this from our gov't.........
and, if need be, I will cross the border and take care of it in Buffalo NY
and pay
then, visit our newspapers....... grease that wheel........

laughing, it all makes us stronger as a unit.........
and I am stronger from my treatment ...
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Postby esta » Fri Dec 10, 2010 2:53 pm

i was told i'd better get my follow-up doppler ultarsound privately, as i won't be referred to a specialist, so i am going to the private clinic at vancouver, false creek.
i am not good in hostile environments, so those that can forge ahead, regardless, i salute you..i know it's a simple blood flow ck, they don't have to have the zamboni protocal do they?
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Johnson » Fri Dec 10, 2010 5:14 pm

esta wrote:...i know it's a simple blood flow ck, they don't have to have the zamboni protocal do they?


I do not believe that the Zamboni protocol is critical for follow-up. What we want to see is a) is there flow? b) is there stenosis? (if you familiarize yourself with DUS, you can see the stenoses. Engage the technician to show and tell, they love to share) c) is there turbulence? (very obvious on colour Doppler US). There are also above line/below line graphs that show direction of flow, and speed of flow.

I had a pretty concise DUS (twice) at local ER and hospital, to rule out possible clotting (there was no clot). On the disc provided (FOIA - your right to your records), stenoses, funky valves, reverse flow, turbulence, are clear. The difference is that the "Zamboni" DUS was 93 images, the hospital/ER was 18 images. Qu'elle difference? I know I have CCSVI, and don't need diagnosis. I know that I am re-stenosed - my symptoms tell me that.

I am not entirely sure of what follow-up should be. Is it to check for clots?, Re-stenosis? Flow? I can see that it might be less straight-forward if you have a stent, like esta, and others,, but if it has just been angioplasty, I don't see the requirement for a specialist follow-up, other than for database information, and that can easily be shared electronically. Even with a stent, what specific examinations are needed by US? Flow and re-stenosis, I presume. The Zamboni protocol would not provision for stents in any case, as he does not use them. Surely, one does not need to travel for follow-up ultra-sound examinations. and False Creek charged $500 for it. Try getting your GP to Rx US, or go to ER and say that you think you have clots. They should/will take it seriously.
My name is not really Johnson. MSed up since 1993
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Postby blossom » Fri Dec 10, 2010 8:21 pm

johnson, i'm kinda in the same boat. i got a doppler back home. they say no clots. i got a script for another one because albany wanted follow ups every 3 mo. for a yr. i want to be smart about all this but i feel so stupid and admit at this point i feel kinda like "chicken little". i know we can all restenose but how long should we be concerned about clots or perhaps damage that can result to the veins? i had no stents. have you stopped progressing? i seem to be progressing faster.
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Postby Trish317 » Sun Dec 12, 2010 12:17 pm

Is there a link to the proper Doppler protocol? My darling man is having an ultrasound this month....his 3 month post procedure. He's going somewhere local to him but I don't know if they're going to know what they're looking for or exactly how to do it correctly.

He found out that his GP's daughter has MS and also had the procedure with no positive improvements, also. As a result, his GP doesn't believe in the CCSVI connection. Because my darling man did not have improvements (intially he experienced feeling in his feet and increased energy), his neurologist hasn't been convinced either.

I believe he's restenosed. I also know that, because of the broken neck he suffered in his 20's and all the subsequent surgeries to fuse the vertebrae, his situation is different than many people. I maintain that his problems were made worse with all the surgeries.

But I still want him to have all the proper follow-up. His condition is getting worse and I don't think it's because the procedure didn't work.
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Postby Cece » Sun Dec 12, 2010 2:08 pm

Oh, Trish, such a hard road. :( Doesn't feel fair. Yes, there is a doppler protocol somewhere, on the Haacke mris website maybe?
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Postby esta » Sun Dec 12, 2010 2:12 pm

trish317
i would hope, as he only had the angioplasty that he is going where they can re-do the procedure, and not waste his time, because restenosis is usually the return of symptoms...
i'm getting ck'd because this is my 2nd time and i have a stent, and i would like to know if my blood flow is 'normal' since a few symptoms are sporatic, like headaches, plugged nose, etc. if it isn't normal, i have a lot to consider, coming from canada.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby esta » Sun Dec 12, 2010 2:15 pm

johnson, i'm not sure either, but i now have a clearer idea, tx
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Cece » Sun Dec 12, 2010 2:20 pm

esta wrote:johnson, i'm not sure either, but i now have a clearer idea, tx

I thought so too, thanks as well.

Dr. Sclafani's instructions are to find someone locally who does the full Zamboni protocol, not just a regular doppler ultrasound, for follow-ups. I do not have this lined up yet.
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follow up in Ontario

Postby tiredloulou » Sun Dec 12, 2010 7:18 pm

Well, I did what was suggested here on getting a simple doppler follow up
I went to our ER........headache, chest pain........
told them, had high blood pressure/ stent

they did a cardio-gram and sent me home..........
oh, and said, I might have a pinched nerve.........
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Postby Trish317 » Sun Dec 12, 2010 7:23 pm

Cece wrote:Oh, Trish, such a hard road. :( Doesn't feel fair. Yes, there is a doppler protocol somewhere, on the Haacke mris website maybe?


I think I have the link to the Haacke site. Thanks, Cece.
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Postby jacksonsmommy » Sun Dec 12, 2010 7:26 pm

I got my follow up doppler in Calgary, but I had to be a bit of a biatch in order to get it!

My GP gave me the referral and then the ultrasound place said they "couldn't" do it. Gave me some crap lines about it being experimental/College of Physicans says no, etc.. My response was that I wasn't looking for a diagnosis of CCSVI, but to make sure my stent was still patent. I also said "If you can't do venous dopplers, why is there a check box on your form for it?".

I ended up having to go up a couple of levels of management. To really make my point, I also sent them a copy of the Zamboni protocol from a vascular journal.

Moral of the story - don't take no for an answer. You have to be your own health advocate.
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!
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Postby Trish317 » Sun Dec 12, 2010 7:27 pm

esta wrote:trish317
i would hope, as he only had the angioplasty that he is going where they can re-do the procedure, and not waste his time, because restenosis is usually the return of symptoms...
i'm getting ck'd because this is my 2nd time and i have a stent, and i would like to know if my blood flow is 'normal' since a few symptoms are sporatic, like headaches, plugged nose, etc. if it isn't normal, i have a lot to consider, coming from canada.


Unfortunately, there's no one performing the procedure who's really close to him. I asked him if he'll consider having it done again, and he's not sure. He definitely won't travel a long distance again.

I hope everything is alright for you, Esta.
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