Doppler result= No Stenosis, phlebography needed??

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Doppler result= No Stenosis, phlebography needed??

Postby adamt » Tue Jun 22, 2010 8:09 am

Hi,

Today i got Doppler tested
It lasted an Hour, with the doctor scanning the jugulars over and over again, from diff angles and then the sides of my neck then my temples - dont know why!

So the whole test lasted about an hour and i cant see the images-report for a few more days - as she finished work after me

But she did say there wasnt any stenosis - twisting, very constricted etc, in either jugular vein

Just that the right jugular vein was thinner than the left jugular,
But she then said this has been seen before in patients without MS.
(my ;eft leg is the weaker one)

She said having a Phlebography would give me a 100% YES/NO answer as to if i have any stenosis

She also said you cannot check the Azygos with a doppler/MRI, Phlebpgraphy is the only way to check there for stenosis,

She suggested having a phlebpography, and she would check every vein in the body!
and if there is narrowing, she will inflate them with a balloon.

she also said there was the correct veins in the jugulars, but there may be missing/non-existant veins near the spine

My symptoms are ONLY lower body affected - walking, balance, bladder, stiffness (when first standing), so i can onkly put this down to stenosis near the Lower spine - also there was a lesion near the lower spine (when MRI tested years ago)

- she kept stressing that the no stenosis wasnt a 100% answer and that everyone has different veins.

Does anyone have any opinions of her verdict, and whether it would be worth having a phlebography after a 'no stenosis in jugulars' doppler?
Will it definitly assess the veins more than the dopler

sorry for the long message and all replies appreciated
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Postby whyRwehere » Tue Jun 22, 2010 8:32 am

Adam,
I think you know my opinion; I would do the phlebographie ... it is the only way to truly see what is going on in there.
Hope you are enjoying the weather....it's been a grey Spring and now, I think it is too hot!!
Why
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Postby fernando » Tue Jun 22, 2010 8:44 am

In my experience the technician/Doctor (who must have years of previous experience doing echo dopplers) has to be trained in the new protocol and the machine has to be the right one.
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Postby TMrox » Tue Jun 22, 2010 11:20 am

Phlebography is primarily performed to diagnose deep vein thrombosis—a condition in which clots form in the veins.

To diagnose CCSVI you need the doppler scan done by an experienced technician and/or a selective venography, that is the gold standard test to diagnose CCSVI.
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Postby adamt » Tue Jun 22, 2010 11:22 am

Thanks Why,

Im just not sure whether its worth paying £4000 for a phlebography/venogram, when ive already had a negative doppler of the jugulars.

Also the doctor said only 10% of their patients see improvements in their symptoms,
but virtually everyone else who has been liberated in other clinics sees improvements

im not sure what to do
Last edited by adamt on Tue Jun 22, 2010 12:20 pm, edited 1 time in total.
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Postby Perky » Tue Jun 22, 2010 11:39 am

Can I ask where you were tested, adamt? I am interested as you mention the price in £'s.
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Postby TMrox » Tue Jun 22, 2010 12:32 pm

The fact that this doc wanted you to have such an expensive phlebography test £4000 suggests that doesn't know much about CCSVI.

Look for an expert on CCSVI. Are you sure that the doppler used was the designed by Zamboni?

There are things that the doppler might miss such as stenosis in the azygous.

If you live in the UK the cost of test + treatment + follow up tests is around £5,000 in the essential health clinic.

http://www.essentialhealthclinic.com/we ... ation.html

This clinic has the doppler patented by Zamboni.

Not sure why your doc said only 10% of liberated patients see improvements. The testimonies of Drs Simka and Zamboni at the Canadian Parliament suggest otherwise.
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Postby Salvatore24 » Tue Jun 22, 2010 4:56 pm

When I had my doppler it lasted about half an hour, when the technician was finished she said : "Everything seems to look normal". I was disappointed when she said this. Then when I received the written report it said that I had more than 50% stenosis. Has this technician been doing dopplers for CCSVI, or were you the first patient?
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Postby adamt » Wed Jun 23, 2010 3:13 am

Perky wrote:Can I ask where you were tested, adamt? I am interested as you mention the price in £'s.


I was rtested iin France, however i m not sure if i can reveal names at the moment, i wil ask the doctor on Friday if they are ok with it.

TMrox wrote:The fact that this doc wanted you to have such an expensive phlebography test £4000 suggests that doesn't know much about CCSVI.

Look for an expert on CCSVI. Are you sure that the doppler used was the designed by Zamboni?

Not sure why your doc said only 10% of liberated patients see improvements. The testimonies of Drs Simka and Zamboni at the Canadian Parliament suggest otherwise.


no, my doctor has performed numerous liberation procedures - ballloon angioplasty. and also explained how none of them had recoil/re
stonsis afterwards


But like i said she said only 10% see improvements,
this bothers me, as i cant help but think that they could be doing the angipplasty incoorrectly!


Salvatore24 wrote:When I had my doppler it lasted about half an hour, when the technician was finished she said : "Everything seems to look normal". I was disappointed when she said this. Then when I received the written report it said that I had more than 50% stenosis. Has this technician been doing dopplers for CCSVI, or were you the first patient?



No, the doctor is a angiologist, and has experience with CCSVI testing.
The doctor said its possible for people wthout MS to show one jugular thinner than the other.



Does anyone have Dr Zamboni's balloon angioplasty procedure protocol?
or any angioplasty protocol for CCSVI?

I would feel more comfortable if i showed the doctor this first


- - i really dont want to undergo the procedure to then have ballooning, and see NO change.

thanks everyone for your replies
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Postby adamt » Wed Jun 23, 2010 8:25 am

anymore opinions please?
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IVUS

Postby Rosegirl » Wed Jun 23, 2010 6:13 pm

Even with no blockages, you should be checked for problems with the valves in veins and/or flaps that impede blood flow.

During the venagraphy, ask for the doctor to use IVUS that will look for these problems. Properly used, it can find issues like valves that stick (but don't look like they are stuck because the catheter is holding them open).
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Postby TMrox » Thu Jun 24, 2010 3:58 am

If it is a doctor that is experienced in testing and treating CCSVI you should not be too concerned about showing further references.

However, as a patient, it is always important to read, read and read to be sure that you are in good hands and understand what is going on.

Before my venography and angioplasty I had read the following article. My vascular surgeon knew that article by heart. Have a close look at page 1356 when talking about alternative procedures to prevent restenosis. That is what your surgeon should be very aware of.

http://www.ctv.ca/generic/WebSpecials/p ... _final.pdf

An important piece of information that was left out of this article (apparently because the Editor suggested to shortened the article). That information left out is discussed in the following thread. It is important that you discuss this with your doctor BEFORE you have the venography.

http://www.thisisms.com/ftopict-12371.html

There are many other free journal articles on CCSVI at:
http://www.fondazionehilarescere.org/en ... zioni.html

Here are CCSVI protocols
http://www.ms-mri.com/potential.php

more info about how to be treated and a radio interview with Dr Haacke
http://www.multiplesclerosissurgery.com ... ccsvi.html

Absolutely no one can tell you what the impact of the liberation procedure will be on your particular case.

As far as I know, I’m the first person who does not have MS and who has had the liberation procedure.

My vascular surgeon told me very clear that I was the very first non-MS patient that to their knowledge was going to have the procedure. So we were working in unknown territory.

I have Transverse Myelitis which is a demyelination of the spinal cord not the brain. Once my doctor found the very bad stenosis I had (100% azygous and more than 90% in left internal jugular) he suggested to have the angioplasty, regardless of what the impact will be on my neurological condition. I completely agreed with him.

Three months later my life has changed for good. See my progress at:
http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921
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Postby frodo » Thu Jun 24, 2010 6:50 am

adamt wrote:anymore opinions please?

Have you think about testing for TOS? (thoracic outlet syndrome). It is a problem in which the neck muscles compress the arteries, nerves and veins.

I found once an address in London. The doctor is not aware (as far as I know) of any connection between TOS and MS, so you should expect at most a test for a standard TOS. PM me if you are interested in his email and address.
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