DrSclafani answers some questions

[JoyIsMyStrength]

Hi Dr. Sclafani,

I have been an admirer of yours from afar... I can't tell you how much I appreciate your helpful, wise and witty posts.

Regarding your last post:

So i think that some of those who have had venograms that appear normal just havent had all the right imaging done.

It's obvious you were reading my mail. I've been thinking -- radical, I know, so I have kept it to myself -- that if someone with MS isn't proven to have CCSVI it's because somebody didn't know where to look... whether because they just plain missed it or there are things we don't know yet.

I'm going to Poland in 9 days. Would it be presumptious of me to share your post with Dr. Simka or do you think he would toss me out onto the streets of Katowice? (I've heard he's a nice guy but you never know.)

Thanks,
Pam (another one)
Energizer Bunny is my future

[Cece]

Dr. Sclafani, have you been in touch at all with Dr. Raju in Mississippi?

This condition [May-Thurner syndrome] is vastly underdiagnosed. It is impossible to discover with ultrasound and even difficult to discover with venography (phlebography). It is definitely not discoverd through the evaluation of the arteries. The only certain way to discover it is by means of intravascular ultrasound (IVUS) where the probe is inside the vein. The best research has been done by Neglén and Raju in Jackson, Miss.

Yes. Dr. Raju is also a personal friend of Dr. Zamboni. As a matter of a fact, Dr. Raju had just returned home from a visit with him when he approached me about the [CCSVI] study. I am a registered vascular technologist and the chief vascular technologist where Dr. Raju works and have seventeen years of experience in ultrasound. He along with a neurologist here have been sending patients to me for an ultrasound of the intracranial veins as well as the juglar veins. I follow the procedure that Dr. Zamboni has outlined in his study. As someone else here has already mentioned, a lot of vascular technologist scan the juglar veins on a regular basis for the purpose of ruling out a blood clot. There are not a whole lot of technologist that scan the intracranial arteries let along the intracranial veins. The scanning of the intracranial veins should definitely be done by a registered vascular technologist with lots of experience in transcranial doppler and a heart and desire to help with the validation of what Dr. Zamboni has already seen with the research that he has done. I can tell you that as a vasular technologist that scans venous patients everyday for chronic venous insufficiency of the lower extremities, (which requires the patient to be standing the whole time) it is very taxing physically to scan a patient in an upright position. That is why I say that a technologist must have the heart and desire as well as skill. Essentially, Dr. Zamboni is to CCSVI what Dr. Raju is to CVI. They are both pioneers in their fields and have brought the world of CVI and now CCSVI to us as we know it and are beginning to know it.

[simone]

That ultrasound is quite specific. The Doppler is quite relevant and the images need to be taken in just the right way, otherwise the diagnosis is unclear.


So it is clear that we need to create a standard. that standard needs to be specific, reproducible and simple.


by the time i learn this one, paolo may have perfected a US test that is easier to do with similar reliability.

Is anyone in the US or anywhere doing that?

What are your thoughts on how to create a standard? [ If you don't mind]

I hope Paolo can come up with something easy to use. Then there is the issue of where to do what.

Welcome back D Sclafani. I guess you don't get jetlag since it appears you don't need to sleep. It was a treat to hear you speak in Italy.

ps did i hear dr Z say they are going to do a blinded study of sort? ( brain fog is getting worse)

[CureOrBust]

Dr. Sclafani,
Can you explain why people who have had treatment sometimes have a return of old symptoms when sick? ...

...i am not sure that "illness" brings on old symptoms when sick. perhaps it is the stress? I will look around.

if illness leads to stress???...

I have had MS symptoms for around 15 years (but have yet to be treated for CCSVI). My ONLY trigger for a relapse (ie new or worsening/return of old symptoms) is a cold/flu (ie illness). If I get a "bug" I can be guaranteed to have a relapse , no matter how minor the illness is. I have NEVER noted a relapse from stress, but I am not known as someone who is stressed easily.

I am not the only one who has this pattern, and when I told my neurologist, he said it was quite common to have a flair after a "bug".

[hwebb]

interesting CureOrBust. I seem to get a flare up with viral infections which cause hot/cold fever (bacterial infections OK, minor viral infection with no fever OK). My symptoms are enhanced when I shake with the cold of a fever, and sweat with the heat of a fever. Interestingly, hot water or a hot climate does not cause a flare up.

[Rosegirl]

Hi, Dr. Sclafani,

When your study is approved (!), how many doctors will be participating in it by actually doing venagrams on patients? Do you have a goal of the number of patients and/or treatments that you plan to perform each week/month of the study? How will you deal with the huge backlog of patients who are already on your waiting list?

The MS community may not have most of our neurologists on the CCSVI bandwagon, but it's more critical that we have IRs that are trained and able to treat us. How heartbreaking that so many doctors and patients are currently "operating under the radar" for fear of reprisal.

And, finally, do you have a plan to share with other IRs the incredible gift of satisfaction that comes from being able to make such a huge and positive contribution to patients and their families?

Thank you for your continuing support and contributions to the CCSVI knowledge base. Thank you for seeing us as people that your skills can help.

Rosegirl

[L]

That ultrasound is quite specific.

Thanks Dr Scafani. We all know how difficult diagnosis is but it's good to have it broken down a bit.

[THEGREEKFROMTHED]

[KikiT]

Dr.S you get an A+ on your Homework!! Thanks for taking the time to continue to learn and putting your EGO aside unlike many docs (we all know a few)
Our trust in you is immeasurable..!! Waiting patiently.............(well... maybe not too patiently)

I just want to hug you !!

[Daisy3]

Hi Dr S,

My husband has been-recently-diagnosed with MS. It's also a rare form of MS too,known as RPMS. It seems a lot like PPMS.
Have you any experience with RPMS?
My slight worry is that when we do finally have the investigations done they won't find anything wrong with him.

Dr Zamboni did not mention this type of MS as far as I know..

[Algis]

It starts to become nebulous here There are left and right lumbar veins that lead to inter-costal veins and azygos and/or hemi-azygos veins ...? And I forgot he real iliac link...

My idea of having a 'all main veins' check is getting close, Doctor. While my brain looks like polenta for now; I'll try to understand/follow

Thank you!! Hope to have a solved maze soon

[Cece]

Dr. Sclafani, awhile back you'd mentioned that you'd talked to the chair of pediatrics about CCSVI. One of the many difficulties in designing a pediatrics study was finding the children/teens to include who might have a high chance of having CCSVI and developing MS. I found this, it's new research on the biomarkers of MS, is this something that could be useful in finding those children?

Examining blood samples of 20 19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS, Achiron and her team at Sheba were able to use a "high throughput analysis" with more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers.

"Those who will develop MS will show a different blood signature from those who will not," states Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes."

These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron foresees that the biomarkers will be used as a tool for brothers and sisters of patients.

http://www.israel21c.org/201006138028/h ... -sclerosis

[Cece]

a waste of time if only diagnostic.
would love to see the study protocols to determine their relevance

ccsvi-study-by-banwell-team <shortened url>

ccsvi-study-by-costello-team <shortened url>

ccsvi-study-by-field-team <shortened url>

ccsvi-study-by-fox-team <shortened url>

ccsvi-study-by-torres-team <shortened url>

ccsvi-study-by-traboulee_knox-team <shortened url>

ccsvi-study-by-wolinsky-team <shortened url>

[Rokkit]

How can evaluating the lumbar veins be helpful? it is helpful in explaining the disease. at the current time, there is no solution to the lumbar vein narrowings (hypoplasia). But it can explain the disease. It appears that lumbar hypoplasia is associated with PPMS.

Needless to say, this is an extremely encouraging avenue to explore. I am missing the bulbocavernosus reflex which almost certainly indicates an as-yet unseen lesion in my S2-S4 spine. My venogram which didn't reveal anything suspicious in the lumbar area was done from the right side. Whether anything can be done about it or not, I'd sure like to know what's what down there.

[larmo]

These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron foresees that the biomarkers will be used as a tool for brothers and sisters of patients.

http://www.israel21c.org/201006138028/h ... -sclerosis[/quote]

Great find Cece. I have mixed emotions when I try to factor CCSVI into the picture - makes my brain hurt.
This one is going to need a thread of it's own. I foresee a lot of discussion.