DrSclafani answers some questions

[pairOdime]

prairiegirl,

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

[Donnchadh]

prairiegirl,

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

There's some other factors concerning using MRV's. One of which is that we are talking about uber-strength T machines. I am aware of only of a couple of MRI machines capable of producing the magnetic field required for the Hubbard protocol here in Chicagoland. Also, we are talking about much, much more expensive testing for a MRV versus an ultrasound.

Also, an MRV is static and can't show flow dynamics.

The downside is that a doppler ultrasound does need a skilled technician and image interpretor. Training and experience is the key here.

Donnchadh

[Cece]

Donnchadh, I missed that, could you repeat it again? ;)

Just copying this over so thread-goers here don't miss this, it's drsclafani's in-depth explanation for why the azygous imaging needs to be at just the right angle.

rockitt
these images of the azygous are an emphatic illustration of the difficulties of interpretation and the wide variation in rates of incidence of azygous disease stated by different operators.

Some of these images look like they were taken in a shallowe obliquity of the azygous vein. While imaging of the Ascending portion of the azygous vein is not dependend upon the view, images of the arch are very sensitive to the angle taken. The views of this vein seem to foreshorten the azygous vein. that means that we are looking right down the barrel of the vein. everything is telescoped on to itself and nothing can be clearly seen because everything is superimposed.. The anterior and the posterior portions of the arch are superimposed. These are the areas of the vein where truncular malformations are going to be situated. thus, this view is unreliable.

my research has shown that the best views for the arch are 70 and 90 degrees. but sometimes more than these two views are required

Other difficulties of looking at these images are the fact that the lung tissue and bronchial tubes are moving during these images. Subtraction is the technique wherein everything on the screen before injection of the xray dye is rendered gray, leaving only the xray dye to be seen. Subtraction angiography requires that there be no movement between the picture subtracted and the picture with the xray dye. if there is, everything gets distorted. Webs, septae and abnormal valves may be hidden from view or false webs septae and abnormal valves may be created. There is lots of "misregistration" present on your images.

Finally, we only see the part of the vein closest to the superior vena cava. Why? does this mean that there is an obstruction at that point, i.e. a candywrapper stenosis? or does it mean something else.
I have found in many situations that how the azygous vein looks depends to a very great deal on whether the images were created in deep inspiration or end expiration. One view may look completely obstructed and the other might look totally normal. This is one of the reasons that i think that IVUS is really essential. It differentiates phasic narrowing from a stenosis extremely well.

there are other challenges in looking at the azygous that i would need to write for lot longer to explain. Then what would i write later on

Thus imaging the azygous is highly dependent upon the operator.

i do not think i can interpret your images with any reliability. Unlike nunzio's which is very clear.

http://www.thisisms.com/ftopicp-151959.html#151959

[drbart]

prairiegirl,

Dr. Sclafani has mentioned that a regular MRV is not very useful. The Haacke MRV is the only MRV capable of determining flow problems and identifying CCSVI via MRV. The doppler US for CCSVI is operator dependent and requires a high degree of skill and experience.

There's some other factors concerning using MRV's. One of which is that we are talking about uber-strength T machines. I am aware of only of a couple of MRI machines capable of producing the magnetic field required for the Hubbard protocol here in Chicagoland.

3T is actually pretty common. Making good use of it is not, sadly.

Also, we are talking about much, much more expensive testing for a MRV versus an ultrasound.

For research purposes, yes. If all you wanted was flow quantification, I think that part is something like 1/2 hour of tube time.

Also, an MRV is static and can't show flow dynamics.

Wrong! Here's a FQ movie taken across a horizontal plane in the lower neck.



resulting in a very informative graph of flow in each major vessel for a cardiac cycle.



These measurements can be taken across any plane, and the Haacke FQ includes upper and lower neck, upper and lower AZV, right and left transverse sinus, and straight sinus.

If you just wanted neck and AZV, you might get away with 10-15 min, and you'd get an operator-independent measurement of total flow.

This would be competitive in cost with ultrasound and remove any worry of how well your ultrasound operator did in Zamboni training.

[Cece]

An MRV will also show how the dural sinuses look, which is useful information even if nothing can be done about it.

Dr. Sclafani, hope your week is going well! Seen anything interesting or unusual in our veins lately?

[prairiegirl]

Thanks pairOdime, Donnchadh, Cece and drbart! We've been told that the US technicians have been specifically trained in the Zamboni method, and the MRV will be done using a new 3T MRI machine to compare scans with the the US tests. Apparently, we were not the only people to ask about the methodology :). There are so many people watching these clinical studies and I believe that people will be very vocal if they feel they are not completed correctly and fairly. It has been said by some that they believe many of these trials are simply set out to disprove a connection between CCSVI and MS. I have a hard time believing that serious medical professionals and researchers would ethically do this. It has been said that in science, the truth always wins. I just hope that these studies will be useful, valid research in the pursuit of the truth. It seems that we could be moving much faster in Canada, even in performing more studies or communicating with other countries re research and procedure results.

[Needled]

irishmum wrote:
Hi Dr Sclafani,

I know some may consider this question not relevant to ccsvi but I think it might. Would you recommend use of the vibrating/power plate as part of an exercise plan or do you think that the vibrations may damage further already compromised veins. (Have tried it once and it feels like even one's brain is vibrating) Research indicates that it is helpful to pwms. My local team asked me to be involved in a research study which is why I would like an opinion.

I had the testing in Poland last June and the Doctor diagnosed slow blood flow in the left jugular. I chose not to proceed with any procedures at that time due to concerns over sticky blood syndrome.

Sorry if this question has been asked before as I know you are busy and involved in a few threads on here.

Thank you again for all your help.

Regards
Mary

I must admit mary that i am not particularly informed about this vibratory therapy. I cannot imagine how vibrations would affect flow of blood in patients with CCSVI

i want to inform you that flow problems identified on ultrasound in one vein does not fully describe whether one or all three relevant veins are affected.
what do you mean by sticky blood syndrome?

Dr. S,
I don’t think your question about “sticky blood syndrome” was answered. It is also known as Hughes Syndrome. The info below is from the Multiple Sclerosis Resource Center site. Also check out http://www.hughes-syndrome.org/overview.htm for more info.

The blood disease that mimics MS - Hughes Syndrome. Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at all. They have something called antiphospholipid syndrome or ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome"...Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat.
What is Hughes Syndrome? Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked... Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill.
MS the wrong diagnosis? The St Thomas's Hospital found that up to one-third of patients coming to their clinic did not have MS at all, but Hughes Syndrome...Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking.
Prompted by a growing number of patients coming to the clinic who had been told they had MS when they didn't, the team at the Rayne Institute questioned a sample of 250 patients with Hughes Syndrome. They found that almost a third of them had originally been told they had MS.
How Hughes Syndrome mimics MS Symptoms include problems with:
• Mobility - difficulty in walking, tripping and dragging foot
• Vision - double vision
• Tingling feelings
• Fatigue
• Balance
• Speech
• Memory

[leetz]

Hello, I had 30% stenosis in LIJV and 50% in RIJV...had procedure on the 20th of Dec. did quite well with result's...balance, steady gait, bladder much improved, MUCH LESS SPASITCITY...in the last week steady decline...question being: Is there better result's getting the procedure done again the second time? Or is it likely for the stenosis to happen again so quickly? Thank you for your time

[ConstableComfortable]

Hi Dr Sclafani

To trouble you again for your opinion. I have been looking furthur at my MRI images from my MS diagnosis and comparing with images and anatomy diagrams online.
I have posted some stills on my blog after finding a Dutch website about venous thrombosis which show mri images of abnormal cerebral veins. To my untrained eye some of them look remarkably similar to my stills. Could you have a quick look and tell me what you think? There is a link to the Dutch site on the blog page.

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

ALSO, I posted a flythough of my neck images on YouTube (and again using Google anatomy pics for my info) I think my right IJV is getting squeezed if you pause it on 6sec. Could you tell me if I'm following the correct blood vessel?



I guess we could throw it open to anyone who would like to spot my IJV's. No prizes I'm afraid, this is just for fun, like 'pin the tail on the donkey', but with moving veins.

I want to go back to my GP armed with any corroborating CCSVI info and hopefully kickstart some kind of treatment. Or at least get referred to a vascular specialist.
Many thanks for your time.

Jon

[eric593]

Dr. S,
I don’t think your question about “sticky blood syndrome” was answered. It is also known as Hughes Syndrome. The info below is from the Multiple Sclerosis Resource Center site. Also check out http://www.hughes-syndrome.org/overview.htm for more info.

The blood disease that mimics MS - Hughes Syndrome. Up to 5% of those diagnosed with Multiple Sclerosis don't have the disease at all. They have something called antiphospholipid syndrome or ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome"...Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat.
What is Hughes Syndrome? Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked... Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill.
MS the wrong diagnosis? The St Thomas's Hospital found that up to one-third of patients coming to their clinic did not have MS at all, but Hughes Syndrome...Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking.
Prompted by a growing number of patients coming to the clinic who had been told they had MS when they didn't, the team at the Rayne Institute questioned a sample of 250 patients with Hughes Syndrome. They found that almost a third of them had originally been told they had MS.
How Hughes Syndrome mimics MS Symptoms include problems with:
• Mobility - difficulty in walking, tripping and dragging foot
• Vision - double vision
• Tingling feelings
• Fatigue
• Balance
• Speech
• Memory

Maybe this is why some people have immediate, dramatic improvements following venoplasty, they were misdiagnosed with MS, and the blood thinners they start following vascular treatment improve the symptoms of Hughes Syndrome?

[AlmostClever]

Dr. Sclafani,

I had a recent venogram (nfortunately, nothing was done except take images).

What do you think of this jugular vein? Could the valve at the bottom be causing an issue? (There is significant collateral activity at the top of the jugular.) It was ballooned in Aug 2010 but is still the same.

Thanks!

AlmostClever

[Cece]

Maybe this is why some people have immediate, dramatic improvements following venoplasty, they were misdiagnosed with MS, and the blood thinners they start following vascular treatment improve the symptoms of Hughes Syndrome?

Blood thinners were tested in MS in the 50s or so without results to be found. I am also not sure if the antiplatelets that are often prescribed (aspirin, plavix) would have an effect on Hughes syndrome or if only the anticoagulants (arixtra, warfarin, lovenox) would? It is interesting, though. I would also rather see a patient turned away for sticky blood syndrome then treated and turn up a week later with completely blocked veins.

[dlb]

it is virtually impossible to prevent motion of the neck, even in a rigid collar.

Today, i reviewed a stent placed in the upper neck. The stent has clearly been damaged by compression against the transverse process of the second cervical vertebra

Other things are also compressed by the stenting process. Did I mention stretch or compression of the accessory nerve, also known as the 11th cranial nerve. It lies very close to the jugular vein in the upper neck and compression of this nerve leads to shoulder weakness, sometimes lasting a very long time.

I realize we have a long way to go before the standard is set for treating CCSVI. The various methods seem to be multiplying. As for the accessory nerve damage, it is very real. The upside is it does repair itself. Those of us who had this problem saw the problem resolve within 4-5 months. I did wear a soft cervical collar soon after treatment and I can't say if it helped my stents to integrate properly, but my results were good. The collar helped the headaches I was having which were brought on by aggrivating the nerve. My stents are very high, so not everyone with stents will have this problem.

Cece wrote:
Thinking over what jak7ham9 said, one thing that stands out for me is that Dr. Dake was able to do a two-month check-up, at which many or most patients received an additional venoplasty or stent. His results may speak to the value of follow-up care, not the use of stents.

Jak7ham9, wishing the best for you.


I can only speculate on any of these results. We have to wait for outcome results in publications.

I think Dake's follow up plan has been very beneficial. In addition, he is always available via email for any questions or concerns. He responds within minutes in most cases. I have been in constant contact with him over the past year. We also send progress emails to him. I am most excited to see the comparison in MRI from my treatment to now. The baseline was charted for us, so we will be able to measure the progress or regression.
I wish everyone had a follow up care plan. It is not a one shot deal at this point for most. Our results unfortunately will not be in medical publications because they were not in trial form. (I think )

Long distance followup is difficult but not impossible. However in order for my followup to be logical i am having to find locations where Doppler screening can be done. I think i have canada taken care of but the US is more difficult. i have some ideas but cant get started unitil this followup is worked out.

With the hlp of TIMSers we have created a patient questionaire survey that patients will use before, one month, three months, six months and then every six months. the data can be tabulated and we can see any perceptible changes patients note.

now comes the really difficult part: finding neurologists who will work with me

so far i have found one, not too close but within 45 minutes of my shop. that is similar to salvi to zamboni, so it can work.

i think i am almost ready...but finding neurologists to partner with has been challenging.

s

Dr. Sclafani,
As my tentative & (several times) rescheduled appointment is looming closer... I am pondering follow-up doppler tests and the comment you made back on October 14th, as quoted above. Is there a place in Canada where you have arranged for follow-up or is that something you will brief me on once I am there for my treatment? Thank you for your help - just wondering if I need to make some arrangements ahead of time?
Deb

[eric593]

Dr. Sclafani,

I really trust your judgment.

Am I wrong in recalling that you had stated earlier that you've never seen these kinds of vein anomalies in your entire career and that, even going back to review venograms of past non-MS patients, you didn't find these types of problems?

I'm just trying to reconcile what I thought you had stated (or please clarify if I'm wrong) with the recent BMJ study, the other studies that showed no difference between MSer's and healthy controls' veins as well as Dr. Hubbard's remarks that he, his wife and daughter all showed vein abnormalities on MRV.

Thanks.

[lovebug]

`dlb`--- I don`t know if you are aware but there is a place in Calgary that is doing the followup DU on patients that have had the CCSVI surgeries done. It is called Sunridge Diagnostic Imaging (403) 568-7676 and it is located in Calgary. Dr.Steed is in charge of this DU. Just thought I would pass that on. You do need a dr.`s referral for the DU.