DrSclafani answers some questions

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

Postby drsclafani » Sat Jan 29, 2011 8:30 pm

ConstableComfortable wrote:Hi Dr Sclafani

I recently chased up my original MRI images from my MS diagnosis and now have them on disk. In one of the files marked 'Localizers' (which i'm guessing is a summary of all the images showing damage), I came across these 2 images:

http://constablecomfortable.blogspot.co ... nosis.html

(NB.I used the viewing software to colour them up)

They shows an area lit up at the top of the spine in the shape of a vertebral vein or artery perhaps? I have no idea if this relates to damage or is just an anomaly because of the type of scan or whatever. I'm thinking that IF it was just picking up the vein/artery by accident, then why isn't the other one there on the opposite side?
If you have a spare minute could you please tell me what I'm looking at? Many Thanks

Jon


it looks like the vertebral artery to me. sad that such studies were done. they have set back MRV quite a bit..dr haacke wouldnt show anything like this
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Postby drsclafani » Sat Jan 29, 2011 8:34 pm

CindyCB wrote:Dear Dr Sclafani,

I was diagnosed with CCSVI this morning. Please note I do NOT have an MS diagnosis but have been assessed for it a few times nows. No leisons on my brain etc.

My report is as follows:
Right internal jugular vein is collapsed in erect position and no normal venous expansion noted in the supine position. There is venous expansion noted in the left IJV in the erect position. There is marked reduction in flow velocity and volume noted in both internal jugular veins in the supine position. On the right there is a significant mid stenotic lesion measuring 1.7mm diameter and on the left also a mid stenotic lesion measuring 3.0mm.

Evidence of bilateral valve abnormailties noted. No significant relfux.
Normal vertebral flow noted in both sides. No evidence of reflux.


Given that my valves and veins seem pretty rubbish, does this mean I am having trouble 'draining' the blood from the brain? This would make a whole heap of sense to me for my symptoms but I want to be sure.

I have numbness and altered sensations on the right side of my body, feeling like I am falling to the right a lot, crawling sensations, dizziness, a rocking sensation, feeling spaced out all the time, memory loss, fatigue and migraines. My vision in my right eye is blurred all the time and I have hearling loss on that side too.

I've had neuro symptoms for a long time but have never found the cause despite looking very hard. I want to know what I am talking about before I share with friends and family.

Many thanks in advance for taking the time to read my post.

CindyCB


This reading does not reflect dr zamboni's criteria. however it is possible that one or two of the criteria are met. Sounds to me like whomever interpreted your study did not fully understand dr zamboni's criteria

you are in a frustrating situation,as are many others. they get studies but the sstudies do not conform to the master. the master has not fully explained easily what he has discovered.

but at any rate, i would consider what you have described as sufficient evidence to warrant a venogram..
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Postby drsclafani » Sat Jan 29, 2011 8:38 pm

drbart wrote:
Cece wrote:Nunzio, I can really see that one too...great teaching example but greater if you can go get that fixed.


So... WTF!? Why are IRs making mistakes that amateur radiologists like us can see?


because you have had a better teacher

Not intending to troll or hijack the thread, but who out there would not agree to have their US/MR/venography posted for comment and analysis?

drbart, give me a break. i have my own patients to take care of.

Medicine has a big opportunity here, with a body of patients who seem to be more interested in communication and knowledge sharing than most MDs.

Let's have a Venography Channel, either live or on YT!


we do, its called DrSclafani answers some questions.

:wink: :wink:

do you remember when i got shut down. i was forlorn, and i asked people to send me their images for an atlas. well the publishers have turned down that proposal so far. seems like they are straddling the fence to see what happens.

remember that was six months ago.....lots changed but still we are in infancy
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Postby drsclafani » Sat Jan 29, 2011 8:42 pm

AlmostClever wrote:Dr. Sclafani,

I was wondering if you could comment on my azygous?

Doesn't the presence of all those collaterals (?) suggest a narrowing?

Thanks!

AlmostClever

Image


almost, those collaterals could mean that the catheter was in a bad position, the radiologist injected to much or too much pressure or too fast for flow to accomodate. it is not so simple in the AZYV

look also at all the misregistration caused by heart pulsation, breathing and patient movement. it degrades the imagess. much easier in the jugular to get good registration.

these are some of the reasons that the aygous is enigmatic and cryptic and a pain in the ass. it is one of the reasons why people just ballon the bejeezus out of it or use IVUS :wink:
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Postby drbart » Sat Jan 29, 2011 9:09 pm

drsclafani wrote:
drbart wrote:
Cece wrote:Nunzio, I can really see that one too...great teaching example but greater if you can go get that fixed.


So... WTF!? Why are IRs making mistakes that amateur radiologists like us can see?


because you have had a better teacher


Indeed! Plus interest and an inexplicable surfeit of time to learn.

Not intending to troll or hijack the thread, but who out there would not agree to have their US/MR/venography posted for comment and analysis?

drbart, give me a break. i have my own patients to take care of.

Yes, hard to balance that and teaching .. lord knows we need both.

Medicine has a big opportunity here, with a body of patients who seem to be more interested in communication and knowledge sharing than most MDs.

Let's have a Venography Channel, either live or on YT!


we do, its called DrSclafani answers some questions.

:wink: :wink:

That, and your new MD-MD channel. Hopefully we'll see even more MDs lurking.

do you remember when i got shut down. i was forlorn, and i asked people to send me their images for an atlas. well the publishers have turned down that proposal so far.

Bummer! That would have been a great resource for the world.

remember that was six months ago.....lots changed but still we are in infancy


Time flies when the establishment is trying to grind you into dust!
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Postby CindyCB » Sun Jan 30, 2011 1:22 am

drsclafani wrote:
CindyCB wrote:Dear Dr Sclafani,

I was diagnosed with CCSVI this morning. Please note I do NOT have an MS diagnosis but have been assessed for it a few times nows. No leisons on my brain etc.

My report is as follows:
Right internal jugular vein is collapsed in erect position and no normal venous expansion noted in the supine position. There is venous expansion noted in the left IJV in the erect position. There is marked reduction in flow velocity and volume noted in both internal jugular veins in the supine position. On the right there is a significant mid stenotic lesion measuring 1.7mm diameter and on the left also a mid stenotic lesion measuring 3.0mm.

Evidence of bilateral valve abnormailties noted. No significant relfux.
Normal vertebral flow noted in both sides. No evidence of reflux.


Given that my valves and veins seem pretty rubbish, does this mean I am having trouble 'draining' the blood from the brain? This would make a whole heap of sense to me for my symptoms but I want to be sure.

I have numbness and altered sensations on the right side of my body, feeling like I am falling to the right a lot, crawling sensations, dizziness, a rocking sensation, feeling spaced out all the time, memory loss, fatigue and migraines. My vision in my right eye is blurred all the time and I have hearling loss on that side too.

I've had neuro symptoms for a long time but have never found the cause despite looking very hard. I want to know what I am talking about before I share with friends and family.

Many thanks in advance for taking the time to read my post.

CindyCB


This reading does not reflect dr zamboni's criteria. however it is possible that one or two of the criteria are met. Sounds to me like whomever interpreted your study did not fully understand dr zamboni's criteria

you are in a frustrating situation,as are many others. they get studies but the sstudies do not conform to the master. the master has not fully explained easily what he has discovered.

but at any rate, i would consider what you have described as sufficient evidence to warrant a venogram..


Dr Sclafani,
My apologies, I should have made it clear that the report states these findings are consitant with CCSVI - also that the sonographer has trained directly with Dr Zamboni and Dr Simka (so I do trust him!).

I was trying to work out HOW exactly this relates to my symptoms - as you say it doesn't match up exactly to the normal criteria - and I do NOT have MS, perhaps this is why and I am in that grey area in between.

I know I am symptomatic of 'something', I have ruled out as many other things as possible at this stage, I have always known the problem is something to do with my neck and how it relates to my brain way before I'd even heard of CCSVI.

Phew, I am confusing myself now! 8O

Thank you again for taking the time to read my post.

CindyCB
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Postby Waken » Sun Jan 30, 2011 1:27 pm

Dear Dr Sclafani,

Just another quick thank you from someone you have not yet heard from to date. Although I have read most of this thread I am positive I have missed a few points (or more). Please forgive me if this has already been asked and answered.

I am getting closer to "pulling the trigger" and getting tested/treated for CCSVI. My biggest concern is having the procedure only to return to my orginal state or worse (restenosis) a short time later.

What role does intimal hyperplasia play in the rate of restenosis (versus elastic recoil of valve) and can the use of larger balloons with higher pressure increase the risk of intimal hyperplasia?

Thanks again.
Lynn (aka Waken)
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Postby ConstableComfortable » Sun Jan 30, 2011 4:13 pm

drsclafani wrote:
ConstableComfortable wrote:Hi Dr Sclafani

I recently chased up my original MRI images from my MS diagnosis and now have them on disk. In one of the files marked 'Localizers' (which i'm guessing is a summary of all the images showing damage), I came across these 2 images:

http://constablecomfortable.blogspot.co ... nosis.html

(NB.I used the viewing software to colour them up)

They shows an area lit up at the top of the spine in the shape of a vertebral vein or artery perhaps? I have no idea if this relates to damage or is just an anomaly because of the type of scan or whatever. I'm thinking that IF it was just picking up the vein/artery by accident, then why isn't the other one there on the opposite side?
If you have a spare minute could you please tell me what I'm looking at? Many Thanks

Jon


it looks like the vertebral artery to me. sad that such studies were done. they have set back MRV quite a bit..dr haacke wouldnt show anything like this


Does this indicate that I have a damaged vertebral artery?

Could you explain what you meant by "sad that such studies were done...."? Is it just a poorly done scan?
This was a scan to diagnose my MS, not a specific vein/artery scan.
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Postby drbart » Mon Jan 31, 2011 10:43 am

drsclafani wrote:
Is it true that many of the treatments done conservatively (ballooned) will likely need to be re-visited?

it is true, but there is no data that shows that other approaches have less restenosis. These alternative approaches are as yet uproven, including my approach to larger balloons with higher pressure.
There are quite a few examples in Australia and New Zealand where benefit reverted quite quickly, I believe these would today be approached differently.

we will have to learn over the next few months whether they have more or less restenoses. remember recurrence has many causes, elastic recoil, intimal hyperplasia, thrombosis, stricture. This is why i have changed jobs rather than do a RCT.We just do not have enough info on what will work optimallyl

Okay, I'm now adequately terrorized, and this example of (I think) hyperplasia looks scary.

http://www.youtube.com/watch?v=qD5IT336CTY

Searching for hyperplasia/thrombosis yielded a drug name Probucol

http://www.ncbi.nlm.nih.gov/pubmed/17070157

but another level of Teh Google yielded nothing in this thread:

http://google.com&q=site:thisisms.com+10680+probucol

Do you have an opinion and/or experience with this drug?
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Postby Cece » Mon Jan 31, 2011 11:56 am

Here are some previous comments by drsclafani on intimal hyperplasia, if it helps:
http://www.thisisms.com/ftopicp-148731.html#148731
http://www.thisisms.com/ftopicp-148699.html#148699

The findings from that linked article on Probucol aren't good:
CONCLUSIONS: Treatment with the antioxidant probucol failed to reduce neointimal formation after coronary stent implantation as assessed by IVUS volumetric analysis.
Last edited by Cece on Mon Jan 31, 2011 8:26 pm, edited 1 time in total.
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Postby CCSVIhusband » Mon Jan 31, 2011 12:36 pm

Dr. Sclafani:

I keep reading about not wanting to do stents in the IJV ... ok, understood - no problem with that thinking whatsoever.

What about in the azygous? There is less bending and twisting regularly there (if at all) ...

Any input from other CCSVI doctors about that azygous you couldn't determine a proper treatment for on 1/3?
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Postby Waken » Mon Jan 31, 2011 8:21 pm

Cece wrote:Here are some previous comments by drsclafani on intimal hyperplasia, if it helps:
http://www.thisisms.com/ftopicp-148731.html#148731
http://www.thisisms.com/ftopicp-148699.html#148699


Big thanks Cece. Interesting read and it sounds like there is much to be learned as we march forward and gain more experience. Like many here I am torn about doing it "now" or "later".
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Liberation procedure (second time)

Postby sara2407 » Tue Feb 01, 2011 3:04 am

Dear Doctor Sclafani,

Here is my report of Bulgarian ( Tokuda hospital ) control check.
On color Doppler-control showed that there was restenosis in both jugular veins.
I spoke with the Prof. Grozdinski and he suggested me to do the procedure again. I transferred him your greetings and opinion about stenosis on azygos vein. You were right when you said to pay attention to the azygos vein, and Dr.Petrov found stenosis of 80%.

This time I asked that the liberation procedure be perform by Dr.Ivo Petrov. And so it was.
Phlebography and venous angioplasty:

V. jugularis int. dex. - 80% stenosis in the middle segment and at the confluence. Several dilatations performed with 14.0x60mm balloon at 8 atm. pressure with optimal angiographic results, without significant residual stenosis and normalized bloodflow

V. jugularis int. sin. - 80% stenosis in the middle segment and at the confluence. Several dilatations were performed with 14.0x60mm balloon at12atm. pressure with optimal angiogrphic results,without significant residual stenosis and normalized bloodflow

V.azygos - 80% stenosis in the middle segment. Several dilatations were performed with 8.0x40mm balloon 10 atm. pressure, significant residual stenosis established, which required stent implantation of Astron 10.0 x 60mm stent with optimal angiographic results, without significant residual stenosis and normalized bloodflow.

ConcluSions: CCSVI Zamboni Type B. Stenosis in both jugular veins and azygous vein. Normal venous blood flow establishe

Echo dopler examination of the jugular veins (One day post-procedurally):
v.jugularis int. sin. - min. d = 6.4 mm
V.jugularis int. dex.- min.d = 6.5 mm
Examination in the sitting position:
V. jugularis int. sin. - min.d = 0 mm;
V. jugularis int. dex. - min.d = 0 mm;
Conclusions: Normalized diameter and blood flow in both jugular veins. Normal jugular vein collapse reaction in the sitting position – indirect data of unobstructed azygos vein.

From surgery was seven days ago. Unfortunately I have not felt the improvements.
Thank you for everything and I ask you once again your opinion.
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Postby drbart » Wed Feb 02, 2011 12:36 am

Cece wrote:Here are some previous comments by drsclafani on intimal hyperplasia, if it helps:
http://www.thisisms.com/ftopicp-148731.html#148731
http://www.thisisms.com/ftopicp-148699.html#148699

The findings from that linked article on Probucol aren't good:
CONCLUSIONS: Treatment with the antioxidant probucol failed to reduce neointimal formation after coronary stent implantation as assessed by IVUS volumetric analysis.


Hmm interesting, and a little sad.

Warfarin is No Fun though. I'd hate to be on that for life.
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Postby prairiegirl » Wed Feb 02, 2011 11:14 am

drsclafani wrote:
Class, repeat after me,

the CCSVI ultrasound is consistent with CCSVI,
MRV does not have proven merit,
venography is the gold standard.

go find a doctor who will do a venogram and treat the stenoses he or she will find


Dr. S,
As I'm sure you are aware, some of the CCSVI studies presently underway are using US and MRV to assess vein patency. My daughter has the option to participate in one such study in Canada. My question is this: do you believe that such studies are of value in furthering the understanding of the relationship of CCSVI to MS? Or, given that your opinion of MRV is that it "does not have proven merit", do you believe that these studies may simply be a waste of time and money? Part of the reason I ask is that gadolinium is used for the MRV, and why would one choose to have an MRV for research purposes if it is of little value?
Thanks for your time, and for all of your contributions to this board.
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