OH Canada..making the Liberation Treatment an option

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

OH Canada..making the Liberation Treatment an option

Postby Miss_Feisty » Mon Nov 23, 2009 8:26 am

A few questions I'm seeking answers to.....

1. I want the testing done to see if I have stenosis...what test do I ask for?

2. Can a patient request the testing from their GP or do they require a specialist?

3. If a blocked vein is present, shouldn't it be fixed regardless of ms?

4. If testing reveals CCSVI, what is the next step...to seek out a specialist?

5. Do we wait for trained people who know what to look for or do we travel to the specialists out of country who perform the procedure?

6. Is there an organization to send donations to for the Liberation Treatment?

At present, it appears in Canada, a few doctors are willing to look at test results but aren't going forward with the procedure, is this correct?

My thoughts are how long are we going to wait for them to hmm and hah over test results? I don't want to waste a few more years of my life for doctors to decide if they want to support this procedure. I'm tired of waiting, tired of waiting for test results, tired of waiting for appointments, and tired of feeling sick and tired.

There must be something we can do. There is always something we can do, if we all stand together and develop a strategy. If our cry is overwhelming, it may be difficult to ignore.

So our first step is knowledge. Presenting facts to our GP's and knowing what we need to move forward. Who should be solicited? If there is a large interest it may motivate a doctor or two in Canada to start the Liberation Treatment.

All thoughts and suggestions appreciated.

I'm going to put something together for my GP and go from there.
Take care all.

:D
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Postby alittletired » Mon Nov 23, 2009 1:01 pm

Lots of good questions!

I can't offer any answers, but I myself being Canadian as well, I am very interested to see where this treatment alternative goes.

If you receive any important info that is not covered in this forum, please PM me.

Thanks,
Chris
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Postby Miss_Feisty » Mon Nov 23, 2009 5:58 pm

I hope to find some answers to my own questions soon and when I do I'll post them.

Canada is a fairly open minded country, hence the W5 program and effort put into advertising the Liberation Treatment. I hope it won't be long before a few doctors jump on board.

I think it's quite unfair that Canadians wouldn't have the same opportunities due to financial constraints and having to pay out of pocket to travel abroad or to the US. I wonder how much of our health care would contribute to this if any? Gee I just added another question to the list.
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Postby SammyJo » Mon Nov 23, 2009 6:20 pm

Try contacting the Canadian collaborators Dr Haccke has listed here
http://www.ms-mri.com/collaborators.php

At least they will know what CCSVI is, and how to do the scans.

First step is getting the scans and diagnosis. Then they should be able to tell you what is happening in the vascular medical community, for intervention.

I have begun this awareness process in my WA, got the interest of an IR, sent some education info, now he says he can do the scans. I put his name on the list of providers at http://healingpowernow.com
so hopefully he'll get more calls.
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Postby Miss_Feisty » Tue Nov 24, 2009 11:30 am

Thank you Sammy Jo for the links. I also like your page it's very straight forward.

:D
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Postby Caddy » Fri Jan 01, 2010 6:23 pm

I was very excited to hear the news in regards to the Liberation Treatment. That didn't last long. All the Doctors I contacted including the head of the M.S. society didn’t seem to be interested. Could be that this is a Surgical Procedure and not some Pharma Drug. The response from Dr. O'Connors SECRETARY was that if we do this for you we would have to do it for 8000 others. Oh and by the way Dr. O'Connor will not be requesting any test.
So when I was informed by a friend recently that she contributes to the M.S. society on my behalf, I simply replied don't do it for me because you may have to contribute for 8000 others poor soles who have been inflicted with this debilitating disease.
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Canadian friends

Postby Bobbi » Sun Jan 03, 2010 1:56 pm

The process in Ontario is very cautious. Doctors are not readily giving out advise because they are not well read on the 'liberation procedure' or testing.
For myself, I went to my family doctor with my research in tow. Had a positive discussion and requested a form for a Doppler ultrasound of the jugulars and AZYGOS. He complied and rather than waiting for the Canadain Health system I booked the test at the Buffalo MRI Centre. Yes I have to pay for the test ($300) and they have reassured me that it will show if there is any blockage in my veins.
This takes place Tuesday, Jan. 5. I will post the results in the STICKY for CCSVI tracking. I will return with a cd of my scans (which runs on any WINDOWS pc) and a report from the tech will be faxed to me the next day.
I am going on blind faith that this test will confirm that I have blockage in my veins. The next step ..... :?: One step at a time.
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Postby SaintLouis » Sun Jan 03, 2010 2:15 pm

Hi Bobbi,

So am I understanding correctly that you were able to call and book an appt. to have the doppler scan as a private paying patient and NOT as part of their ongoing study? Please let me know as I did not know this was a possibility and that is good news.

Also...are they definitely using Zamboni's protocol where you had it done?

Thanks!
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Postby happy_canuck » Sun Jan 03, 2010 2:43 pm

I think several options are opening up in Canada for people to get scans. There's False Creek Surgical Centre in Vancouver, who has done both Doppler and MRV, and are re-scanning to make sure they did it according to Zamboni and Simka's protocols. Someone posted on the CCSVI at UBC Facebook page that they were getting scanned at a Mission, BC hospital, but I am not sure if they are paying or if the medical system is. They will get the scan done this week and report back.

I hope initiatives like this are happening across the country. The stumbling block (after you have convinced your GP for the referral) seems to be finding a trained technician, but these early facilities should get up to speed soon enough. I would like to see some health boards send technicians to Zamboni's training as well.

You can find more at the CCSVI at UBC Facebook page, including the referral forms you'll need for your doctor if you decide to go to False Creek.

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Bobbi » Wed Jan 06, 2010 3:31 pm

Hello
I had the ultra sound yesterday at Buffalo MRI, a public lab, and left with a CD of my jugulars. I can pull them up on my computer and it's cool to look at but I don't know what it is telling me. The techie was not ready to answer my questions about blockage but did say that she had altered some of her procedure to satisfy the Zamboni protocol I had sent her earlier in the week.
The doctor/radiologist would review the untrasound with Zamboni's protocol in hand but would need more time to do this. She said that he may even suggest a MRV!!! At that point I handed her the MRV protocol. I will get the report faxed to me on Monday.
She said that since I had requested these tests the owner has looked into CCSVI and was very interested in looking into whether they have the equipment and the knowhow to do this MRV. They have had over 100 calls inquiring about these tests in the past two days. So maybe the ball will get rolling.
Bobbi
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Postby broomdancer » Mon Feb 01, 2010 11:54 am

Hi everyone: Hope I am in the right thread and that I can get some help. My husband had a doppler last week . The tech reported that they could count on one hand how many of these they had performed. Now that was not to reassuring but we were already there so had nothing to lose. We received a copy of the scan but that didnot help us but a few days later received a photo-copy of the results as follows:

Supine study

RT IJV cross sectional area: 39.9 mm2
LT IJV " " " : 33.1 mm2
RT " Dopper waveform: Normal antegrade phasic flow & no reflux
LT IJV " " : " " " " " "

RT IJV vertebral vein Doppler waveform: same as above
LT IJV " " " " " " "

Sitting upright (90 degrees)

RT IJV cross sectional area: 20.3mm2 (change from supine =19.6mm2)
LT IJV " " " : 14.9mm2 (" " " =18.2mm2)
RT IJV Dopper waveform: Normal antegrade phasic flow & no reflux
LT IJV " " : " " " " " " "
RT vertebral vein Doppler waveform: Continous phasic flow
LT " " " " : " " "

INTERPRETATION
Cross sectional area of the internal jugular veins in the upright position on the low side (normal cross sectional area in the range of 60-70mm2) and areal change below what would be expected from supine to upright raising the possibility of an element of compromise of the cerebral outflow.

Okay folks, now what? Having no reflux doesnot exclude the possibility of CCSVI and would having a Transcranial be the next step or ??? It goes without saying that I would really appreciate your help. My husband was diagnosed with PPMS in 03.
Regards Diana
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Postby lilsis » Mon Feb 01, 2010 5:08 pm

may i ask where you received your testing? my sister received testing at False Creek in Vancouver and her written results didn't include any numerical evaluation, and they only did the testing supine (laying face up).

"Cross sectional area of the internal jugular veins in the upright position on the low side (normal cross sectional area in the range of 60-70mm2) and areal change below what would be expected from supine to upright raising the possibility of an element of compromise of the cerebral outflow. " this means the difference in flow through veins is not as great as it should be when one changes from lying to being upright, suggesting a problem with venous drainage of the brain. the problem may be higher than what the ultrasound can show, if you can get an MRV or even a cat scan, that can show the venous flow in the brain.

My sister happened to have an appt with her neuro the same day she had the testing done and her neuro was like a kid in a candy shop when my sister told she had the discs with her. her neuro asked if she could hang on to the scans and forward the results but now she won't see her to discuss those results! It's infuriating. We just want someone to look at the scans and tell us what we think is right or just a trick of the imaging, we're just being shut down at every step.
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Postby Billmeik » Mon Feb 01, 2010 5:52 pm

Cross sectional area of the internal jugular veins in the upright position on the low side (normal cross sectional area in the range of 60-70mm2) and areal change below what would be expected from supine to upright raising the possibility of an element of compromise of the cerebral outflow.



this sounds like theyre looking for blockages correctly and maybe finding them?
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Postby broomdancer » Mon Feb 01, 2010 7:17 pm

Hi Lilsis:
I hear you, when you mention how fustrating it can be . I keep knocking on doors and occasionaly one opens a little but the ohh the wait can be sooo difficult.
It was the Port Perry Imaging lab in Ontario that performed my husband's test and the tech was Russian. When I made the appt. the receptionist assured me that they were confidant that they could do the test correctly and it was a new 3d Doppler. Our GP is definitely on board with this but I want to make sure that I ask for the proper tests so that I don't waste his time, so unless I am wrong, I should be trying to get a Transcranial MRV or MRI. Does anyone know where one of these would be performed in the Toronto area? Thank you for replying so quickly and I hope you learn of your sister results very very soon.
Regards
Diana l
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