Time to see results

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

Re: Time to see results

Postby Cece » Tue Sep 27, 2011 11:48 am

Rosegirl wrote:Cece, you said that it is unusual to hear of stenoses in the vertical portion of the azygous. What is this comment based on? Does it imply that other doctors are not treating that section of the vein and patients should be sure to ask to have it evaluated?

No, this is from statements by Dr. Cumming and Dr. Sclafani.
What I meant was that stenoses in the vertical area of the azygous are less common than in the arch, and that doctors may be over-treating this area, and that it should be evaluated with IVUS before treatment.

Here's a case study from Dr. Cumming where a vertical portion of the azygous appeared to have a stenosis, until it was examined under IVUS:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16483-15.html#p164981

Here is Dr. Sclafani in the same thread, discussing the "candy wrapper":
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16483-15.html#p165155

I couldn't find it in an easy search but Dr. Sclafani has said in the past that he mostly finds lesions in the arch, not the vertical portion.
Dr. Cumming mentioned at my appointment earlier this month that he is finding fewer stenoses in the azygous now that he is using IVUS.

ok, here is Dr. Sclafani saying that he is very skeptical of the mid-ascending azygous stenosis:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-5340.html#p169024
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Re: Time to see results

Postby MrSuccess » Tue Sep 27, 2011 3:28 pm

The concept of CCSVI ... has only been on the front burner .... since 2008 ? I believe .

For those following it from Day One ...... to be where CCSVI is today ..... it has unfolded right before our eyes thanks to the grit , determination , and heroics of the pioneer CCSVI patients and their health professionals.

From Dr.Zamboni .... to Dr.Dake ..... to Dr.Sclafani ..... and everyone else involved .... these fine people have gathered vital information on CCSVI over the past 3 years.

This information needs to be collected . It takes time.

It sounds to me like CCSVI , it's association , and use to treat MS ..... is nearing take off..


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How are all these veins ?

Postby MarkW » Thu Sep 29, 2011 2:24 am

Hello duckfan,
I am glad your husband has some veins treated. My understanding is that you need to have many veins checked and treatment mainly of valves. Below is from another thread.
MarkW

MarkW's diagnosis list on 28 Sept (possibly out of date today):
Gold standard diagnosis of CCSVI syndrome must use both intravascular ultrasound (IVUS) and catheter venograms. Veins in the neck and truck scanned should include vena cava, transverse and dural sinuses, plus internal jugular, azygous, hemi-azygous, left renal and iliac veins.
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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Re: Time to see results

Postby duckfan » Thu Sep 29, 2011 10:01 am

Mark, they checked many, many more veins that needed no treatment. I didn't report the whole story, sorry.
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Questions to ask

Postby MarkW » Fri Sep 30, 2011 6:43 am

Hello duckfan,
I hope you can ask questions of your interventionalist now. I guess you have pictures of what was checked and can cross refer with the list that I compiled from listening to experts. My understanding is that if some veins have not been checked it is incorrect to say "I was fully de-stenosed on this date". It seems that missing stenoses in veins close to the skull is easy to do. Logically, problems very close to the skull could cause greater problems, but there is no evidence yet.

To answer your original question:
No one knows for sure how long recovery could take after full de-stenosis. I am 15 months after my first procedure and I think subtle changes are still happening.

Kind regards,
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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Re: Questions to ask

Postby CureOrBust » Mon Oct 03, 2011 12:59 am

MarkW wrote:I am 15 months after my first procedure and I think subtle changes are still happening.
I would assume by these words that you had not so subtle improvements soon after the procedure?
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Re: Time to see results

Postby 1eye » Mon Oct 03, 2011 8:49 am

I wonder if the term "genu" is related to the word "genuflect" which I recall was some kind of shallow bend at the knee...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: Time to see results

Postby MarkW » Mon Oct 03, 2011 9:47 am

MarkW wrote:
I am 15 months after my first procedure and I think subtle changes are still happening.

CureOrBust wrote:
I would assume by these words that you had not so subtle improvements soon after the procedure?

I wrote about my improvements from procedure one in a UK national newspaper (link in my signature line). After 20 years from my first MS relapse any positive change is very welcome.

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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