Back From Vancouver...I'd wait if I were you

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

Back From Vancouver...I'd wait if I were you

Postby chiromom1 » Sat Feb 27, 2010 6:01 pm

I wanted to share my experience as I had an MRV and Doppler US at False Creek in early February.

A doctor met with me, and discussed my MS history. He then referred me for an MRV and an US. I returned the next day for my tests.

The doctor doing the US was very negative and skeptical of the whole CCSVI theory. He saw narrowing, but with a change of breathing called (valsalva) the narrowing got better. I said well, I don't live my life in valsalva --- he said I don't live my life with a balloon in my vein either. He found an irregular valve...and I asked him to do the test sitting up...(b/c he wasn't going to) as I sat up my left jugular remained dilated and full of blood (it should empty and be flat when sitting) I said to him...Don't you think that could indicate a bottleneck? He was cynical and said we will wait for the MRV.

I had the MRV and then waited days for the results.

I am a chiropractor, and am experienced in looking at MRI's and US, so when I got home I looked at all of my tests. I found an image on my MRV which shows obvious stenosis in my left jugular, and it matches where the dilation was found on the US.

HERE IS THE THING....NO ONE at False Creek looked at the two tests together...So the Doc that ordered the tests...simply acted to give the req out so they could make their money...but he never interpreted the two test results. No one did. I DID....

So I called the radiologist himself and i discussed the MRV. I emailed him the image I was concerned about. He told me that he does not have access to my US, so he can not comment on the collaboration of the 2 tests...I am thinking WTF? and What is the point?

I saw my neurologist here in Ontario, and he was miffed that I had to interpret my own results.

The test reports simply commented on what what was seen but HEAR ME....EACH ABNORMALITY WAS SAID THAT IT COULD BE AN ARTIFACT OR POSSIBLY A SIGN OF STENOSIS. ANOMALY????

So when i get home to all my doctors...they all say well, it could be an anomaly...it is too soon in all the research...

THE RADIOLOGIST TOLD ME THEY HAVE TO BE CAREFUL WITH THEIR CONCLUSIONS AND IT IS TOO SOON IN THE RESEARCH STAGE TO COMMIT TO NOTICING STENOSIS.

HERE ME...WAIT.

DO NOT WASTE YOU $2000 AS I DID. THEY ARE IN IT FOR THE $$$$ RIGHT NOW, AND UNTIL THEY GET THEIR ACT TOGETHER...I WOULD WAIT, AND WISH I HAD.

I FOUND ABNORMALITIES THAT THEY DID NOT COMMENT ON....

***********************************************************
Ok, So read on, I contacted the medical director of False Creek, and expressed my thoughts. He has been very courteous and professional about my feelings and about my experience. I will let you know how it plays out.
Last edited by chiromom1 on Sat Mar 06, 2010 6:16 pm, edited 1 time in total.
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Postby Brainteaser » Sat Feb 27, 2010 6:47 pm

Good post Chiro,

Sadly, I think you are right - doctors are going in there, having a bit of a dabble, semi-educating themselves, pulling back from doing what's really necessary and then taking our money.

In short, nothing new for MS.

Phil
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Postby katie45 » Sat Feb 27, 2010 6:54 pm

This comes as no surprise to me. The medical profession has been living off our suffering for years! I am so sorry that again they used an ms patient's hope and trust....and$$!
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Postby katie45 » Sat Feb 27, 2010 7:09 pm

Chiromom, please see the Phlebotomy anyone? post/thread it is also Zamboni's theory. A single small blood draw made a huge impact on my spms...it's all about the way we store iron..the cure is simple and cheap!
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Postby cheerleader » Sat Feb 27, 2010 7:26 pm

This is why it is essential to go directly to vascular surgeons and interventional radiologists. They understand what to look for, and are equipped to do venograms if indicated. This is just a diagnostic center, and it appears from this post by chiro, they are ill-equipped to interpret results. Radiologists and neuros won't be able to do anything to help you. So sorry you lost money, chiro. I hope you can get a vascular specialist to look at the tests...maybe now that you have some evidence, you can convince someone to look at your results.
all best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Sun Feb 28, 2010 12:03 am

Hi,

I have heard that Dr Simka plans to spend time with the FCSC team early in March..after this they are scheduled in to Italy to spend time with Dr Zamboni.
My experience with False Creek, although I too had inconclusive results, was postitive.
I know we all worrry about being taken advantage of.. but i also think a smidge of trust mixed with caution is necessary. Yes, the clinics want to make money, tis the nature.. but... if our cause advances along with..this is a good thing... no?
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Postby whyRwehere » Sun Feb 28, 2010 2:34 am

Thank you for the post, Chiromom, I have said the same in the past, that people should not rush out and get any old person to do the tests. We did that for the first doppler, and that was a waste of time and money!! The second time, we went to someone who really knew what he was doing, and he saw the problem clearly. He was very interested in the subject, and that makes such a difference, too. Definitely not a person looking to make money off of this.
At least you can read your own pictures...best of luck for the future,
Why
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Postby Mechanicallyinclined » Mon Mar 01, 2010 10:13 pm

I hate to say it , but I contacted false creek before and I wasn't getting straight forward answers to my questions. It's great that they are getting help from Simka ect , but if they have a crappy attitude about this then why are they involved?
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Postby babiezuique » Tue Mar 02, 2010 11:28 am

Like Chiro did... i had a CRANIOCERVICAL DOPPLER DONE in the westmount square medical imaging in Montreal. They say they follow the zamboni's protocol. The only test they offer to diagnose CCSVI is this craniocervical venous doppler. They dont offer neither the extracranial doppler neither the MRV. We all know that a venour doppler is not enougnt to conclude anything.

this is the result a received from them:

Final diagnostic imaging report from DR Jeff CHankowsky he is a neuro radiologist who work at MC Gill Hospital

Craniocervical venous doppler

Technique:

The examination was perform according to Zamboni protocol, evaluating the cervical, jugular and vertebral venous system, both supine an upright.

Findings:

Both internal jugular veins demonstrate prominent cardiocentric flow in the supine position, wich is normal. Very tiny amounts of reflux are seen
lasting less than 0,25 seconds, wich is normal. In the upright position, both internal jugular veins collapsed significantly, wich is an expected finding.

No anatomical stenoses nor compressions of the jugular veins are noted.

In the supine position, the vertebral veins demonstrate proper flow toward the heart. However there is a definite left vertebral venous reflux with the head rotated to the right in the supine position. This reflus is sustained and is pathological.

The remainder of the study demonstrates no other fondings that are pathological.

Conclusion:

This study demonstrates only one pathological entity, wich is susustained reflux in the vein int he upright position,wich only satisfies one of the five Zamboni's criteria for a positive screening doppler examination. Acording to the recent publication, at least two findings should be present for the study to be consider a positive screening study.

Therefore, this study demonstrates one abnormality, which might be an incidental finding.

Reported by doctor Jeff Chankowsky Mc Gill Hospital


1- how come they tell me i dont encounter the CCSVI criteria for a ccsvi while I only did a doppler that is not an extracranial one... They tell me i dont have ccsvi.... but this test can not be in any way conclusive.

I need your point of view on this!

CHiro.... I agree with you.... they are doing busines with us....They are not in any wat working professionaly with msers.

Barbara
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Postby Mechanicallyinclined » Tue Mar 02, 2010 11:41 am

They tell you that you don't have ccsvi, but that's only with the findings they were able to notice with the tests they were able to perform.
Last edited by Mechanicallyinclined on Tue Mar 02, 2010 4:16 pm, edited 1 time in total.
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Postby Billmeik » Tue Mar 02, 2010 11:55 am

Dr Simka is at false creek today. hope that goes well.
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Postby mangio » Tue Mar 02, 2010 1:40 pm

Goodluck Sandra and Ginger
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Postby Billmeik » Tue Mar 02, 2010 2:03 pm

when they you have pathology they mean there is something bad that should or could be fixed. Whether or not its called ccsvi doesnt matter.
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Postby fogdweller » Tue Mar 02, 2010 2:43 pm

Billmeik wrote:when they you have pathology they mean there is something bad that should or could be fixed. Whether or not its called ccsvi doesnt matter.


That's the truth and the bottom line. The fact that it was 1 and not at least two merely means that if Dr Zamboni were compiling it as data in the clinical trial he did, he would not place a checkj next to "has CCSVI" The doctor was looking for an arbitrarily defined condition one researcher called CCSVI and if you didn't meet that particular experimental criteria, you were free of any problem that might be what people are talking about when they say ccsvi?? Even though he said your veins were pathological??

Makes no scientific sense at all. Shame on him.
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Postby shye » Tue Mar 02, 2010 5:19 pm

babiezuique
the radiologist report is aimed ONLY at addressing the CCSVI issue-this is unbelievable! A radiologist should report all that he sees, and then correlate it with ANY disease or abnormality known. He does say you have the one aberation, then dismisses it because it is not the two abnormalities needed to fit current criteria of CCSVI!!!
If you had gone to him w/o discussing ccsvi, and he had found that abnormality, he would have referred you to a vascular specialist.

How they operate seems highly unethical to me.
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