DrSclafani answers some questions

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

Postby Cece » Wed Sep 01, 2010 10:08 pm

drsclafani wrote:in fact there seems to be a growth in "innovative" (and sometimes bizarre) approaches out there that are very far afield from the original description of Zamboni.

It's the Cambrian age then! (Mass extinction ahead?)

drsclafani wrote:i wanted to catch up here as much as possible because once i am in china everything will be upside down.

Love it....

It must be easy to find CCSVI there, you just look for the people with purple faces....

Have a great vacation#2.
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Postby Johnson » Thu Sep 02, 2010 1:52 am

drsclafani wrote:
kaboodah wrote:Dr. S,

Would blocked or very narrowed veins be the potential cause of high blood pressure? If so, how would someone have normal blood pressure but also have substantially blocked veins? Thanks!


i do not think that that narrowed veins results in hypertension

But could hypertension result in narrowing of veins? I am thinking more specifically about angiotensin. It is interesting that Putnam tried blood thinners. Of course there are different varieties of blood thinners, but what about angiotensin receptor inhibition? Could some of the benefits of the procedure be related to the blood thinners afterward; be it Fraxiparine, coumadin, what-not? I think that Fraxiparine is anti-thrombotic, which would indicate anti-fibrin? And back to collagen abnormalities in "MS".

I'm lost in thought in a deep fog.
My name is not really Johnson. MSed up since 1993
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Postby nicknewf » Thu Sep 02, 2010 5:39 am

drsclafani wrote:
nicknewf wrote:Dr. Sclafani,

Since your symposium, have the physicians who participated started to fall in line around a common treatment protocol... are most sharing information between each other - or are most people practicing in silos?


Absolutely not!

the promise by SIR (society of interventional Radiology) to create some guidelines is helpful and cannot come soon enough...

in the meantime, you have to start asking about experience, and outcomes from the treating physicians and not get too desparate for anyone who offers treatment.

Dr. Sclafani, thanks for your response, and enjoy yourself in China. As a follow up question. I have just read Mehta's approved trial, and I am concerned that they are treating stenosis rather than valves. The more successful (based on data at your symposium) practitioners seemed to be focusing on the valvular issues and observing that in some cases, the stenotic lesions resolved once the valve was corrected (I was never sure if the stenosis were downstream or upstream from the valve problems, but I thought downstream with collateral formation and bulging upstream). Do you know if Mehta plans to treat the stenosis by first treating the valve (cutting the valve) and then doing upstream balloon angioplasty on stenosis at other locations only if they do not resolve?

My wife will be one added to the list of pioneer patients this month, and I want to be able to have a sensible conversation with her and her physician pre-treatment about risks, protocols. I have met her Dr. and trust him to do an excellent job; but he's obviously less than a year at this too!

Thanks again for everything you do here. The peace of mind you help provide is solace.

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Postby Zeureka » Fri Sep 03, 2010 3:49 am

drsclafani wrote:
Zeureka wrote:
Could MTS or other stenosed lumbar area veins also cause a symptom such as numbness only with the SENSATION of swelling accompanied by pins&needles (without however a visible swelling of feet/legs)? Thanks a lot for getting a clearer idea on this.

i think that those symptoms sound more like nerve problems instead of vein problems.
Thank you Dr Sclafani, thought so as well..unfortunately...

For already settled myelin damage in spinal cord causing this (whether the damage primarily caused by CCSVI or not), the only hope of repair might then be this embryonic stem cells/oligodendrocytes technique? Lets hope Obama wins...but know that's a completely different field, also very political...oh gosh...but...may I still be so nasty to ask you your general view on this?
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Postby nellie » Fri Sep 03, 2010 10:42 am

Dr. Sclafani,
2 yrs. ago before I ever heard of ccsvi my gp sent me for a ct scan of my
neck saying she felt there could be a problem.
Clinical Indication---Right sided neck mass
Technique--Ct of soft tissues of neck with intravenous contrast
Findings-- visulaized pulmonary apices are unremarkable. Visualized thyroid gland, submandibular and partoid glands appear within normal limits. Visualized posterior fossa structures appear unremarkable. Mild mucosal thickening of the floor of the right maxillary sinus. Grossly the vallecula is within normal limits. There is mild fullness within the left vallecula due to fullness in the left tongue base likely representing variation inflammation. The pirigorm sinuses grossly appear within normal limits. Cervical airway is widely patent.

No suspicios pathologically enlarged lymph nodes. There is some mild prominent bilateral external jugular veins.

Mild diffuse degenerative changes of the cervical spine.

1. Mild mucosal thickening within the floor of the right maxillary sinus
2. Otherwise, unremarkable CT of the soft tissue of the neck

Dr, my question is after reading the results is there anything in this report to suggest ccsvi? Of course at the time of this test neither she or I had heard of ccsvi but looking back at the test results is their anything pointing to ccsvi or was this test not an indicator for ccsvi? I guess since it was done I was wondering if any results pointed to a ccsvi problem?

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Postby katiee » Fri Sep 03, 2010 11:07 am

i have always been a person who BRUISES very easily. I have heard that people who bruise easily have more fragile veins. Is this true? Are persons who bruise easily more at risk for problems from a venogram, venoplasty or stenting? If yes, what are the potential problems?

How does a person know if they have a hypercoaguability state in their blood system? What are the post procedure problems that might occur with these individuals?
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Testing for all

Postby NZer1 » Fri Sep 03, 2010 5:00 pm

Hi everyone. Dr.S I am keen to get testing for all happening now as a first step and let the experts sort out the treatment detail. It seems to me that we have enough data to prove CCSVI and MS are common together for PwMSers. Enough reports of symptom improvement, especially when compared with DMD'S and other options. Not allot but enough to pump for testing knowing the treatment detail will happen.
I believe that we PwMSers need to focus on getting the one thing going that we can achieve right now.
Testing and setting up a data base with results and an assessment of symptoms and disability.
At the point in the process of getting Treatment ok'ed we could be more proactive with getting training and equipment up to scratch and getting that happening either through Insurance and or Government Health systems. At first the Govt will likely baulk. The likely hood of treatment happening is inevitable the need to get the wheels turning for testing is NOW.
What a yah think. :lol:
I have had to pay for several MRI's and appointments with several Neuro's. And that adds up whereas I could be paying an amount towards treatment and from the other angle the Insurance or Govt Health could actually be saving money by having us tested, then treated later. If a couple of us became Tax payers instead of DMD users what a turn around. Imagine having the choice DMD or Testing for CCSVI with the likelyhood of treatment in the not too distant future.
I got excited with this idea!
Last edited by NZer1 on Fri Sep 03, 2010 10:15 pm, edited 1 time in total.
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Postby Cece » Fri Sep 03, 2010 8:44 pm

Johnson wrote:I think that Fraxiparine is anti-thrombotic, which would indicate anti-fibrin? And back to collagen abnormalities in "MS".

Back many months ago, Dr. Sclafani said something about the actin in the CCSVI stenoses being abnormal. Could abnormal actin interact with fibrin abnormally? Actin is the smooth muscle cells that are part of the vein. If they're scarred or solidified in some way, then they don't stretch, then I think that's one of the ways to have a stenosis.


First layer inside the vein is endothelium, then smooth muscle cells including actin, then the elastic/collagen. So that third outer layer could be a place where collagen disorders related to MS could tie in.

Notice the valve in the diagram too. I find it easy to imagine that valve in various forms of CCSVI FUBAR.

katiee wrote:I have heard that people who bruise easily have more fragile veins.

Here was how he described the jugular and azygous veins, they do not sound fragile:

drsclafani wrote:
Will this treatment be more difficult for those whose veins roll and collapse?
That’s an interesting question. Never occurred to me since the veins we put IVs in are not the veins we are treating or accessing to start the procedure. This experience is great. It is helping me understand the patient point of view. Wiggly veins in the hand and arm used for putting in IVs are still challenging to me. Despite almost 40 years of putting needles and catheters in these veins, I still find them more challenging than doing the actual procedure. I admire the nurses and technicians who are better at it than I. The veins we access for the procedure are the femoral veins. These are much larger, deeper, surrounded by stronger tissues than flimsy superficial veins of the hand and arm. They are not visible but we know where they are by feel (they are just to the midline of the femoral artery whose pulse I am sure most of you can feel). If still not found, ultrasound is useful in seeing exactly where the vein is. Because of the femoral vein's strong fixation to the tissues, accessing it with the thin needle (about the diameter of a safety pin) takes just a few minutes. Putting in the conduit through which all the instruments go is pretty routine and then we do not touch that vein any more. The jugular veins and azygous vein are large veins with substantial wall thickness surrounded by tissue that holds them in place. They do not wiggle or roll. Even if they did, we are inside the vein so it wouldn’t matter. So a short question still has no answer! I would say that the answer is NO, it would not be difficult to do the procedure if you had rolly veins.
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Postby Cece » Sat Sep 04, 2010 1:21 am

Here's another quote, katiee, that doesn't directly answer the question but I think the answer can be inferred that he's not worried about a hypercoaguable state being present during the procedure itself (since aspirin creates a hypercoaguable state including easy bruising):

drsclafani wrote:
side from telling you this anecdote, I do have questions. My doctor wanted me to take daily aspirin because he was still concerned about the high d-dimer. So is it a problem to be taking daily aspirin if you're going to have a venogram? When would you have to stop daily aspirin to make sure it wouldn't affect any invasive procedure? What do you think about tracking d-dimer -- do you use this test?

i keep expenses down to a minimum so i am doing as little blood work as necessary.
Aspirin reduces the stickiness of platelets the first line of defense for blood vessel injury, like what happens in venoplasty. But we are going into a low pressure systsem and i would not hesitate to do the procedure on someone who is on aspirin and would not ask them to stop before the procedure
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Re: Actin

Postby NHE » Sat Sep 04, 2010 3:07 am

Cece wrote:Actin is the smooth muscle cells that are part of the vein. If they're scarred or solidified in some way, then they don't stretch, then I think that's one of the ways to have a stenosis.

Close. Actin is a cytoskeletal protein found in nearly every eukaryotic cell. It polymerizes to form microfilaments which play an important role in many cellular processes. It also forms the thin filaments in the actin-myosin thin-thick filament system in muscle cells that allows a muscle cell to contract. A general reference on actin can be found at http://en.wikipedia.org/wiki/Actin and more detail can be found in any cellular biology textbook such as Molecular Biology of the Cell by Alberts et al. http://www.ncbi.nlm.nih.gov/bookshelf/b ... book=mboc4

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Postby Zeureka » Sat Sep 04, 2010 8:06 am

I have a question about the idea of increased blood flow having an effect on Angiotensin regulation - which might cause feeling of well-being and warm hands/feet (see mention of Dr Simka below). But was at first confused, as research was published in July saying the blocking of Angiotensin I receptors in the brain might be beneficial in MS. This seemed to be contradictory to benefits of increased Angiotensin through increased blood flow. But it seems the link is a different one.

Now read that there are 5 classes of Angiotensin but the one that will probably play a role in CCSVI is angiotensin III - might that then block the AT1 receptor?? Only found that increase of AngiotensionIII releases ACTH (increasing production and release of corticosteroids = could explain relief of some MS symptoms?) and the hormone/neurotransmitter Norepinephrine (increasing Serotonin and Dopamin = feeling of wellbeing).

Sorry if similar question was already posted, but could not find it here.

Angiotensin (AT1R) blockers are on the market, now wonder if these have to do with the other AT III findings. Could those be worth a try or too early to say? Any negative side effects?

Anti-hypertensive drug improves multiple sclerosis-related brain inflammation
>>The scientists working with Professor Platten showed in a mouse model that angiotensin II promotes inflammation in the brain and spinal cord. When the angiotensin receptors, i.e. the sites where angiotensin docks onto cells and can develop its effect, were blocked by the orally administered blood pressure drug Candesartan, the inflammation decreased and the paralysis resolved.<<
http://www.topnews.in/health/anti-hyper ... tion-28247
>>Multiple sclerosis -- antihypertensive drug ameliorate inflammation in the brain July 28, 2010
Researchers in Heidelberg and Stanford have discovered a new signalling pathway of brain cells that explains how widely used antihypertensive drugs could keep inflammation in multiple sclerosis (MS) in check. The peptide angiotensin not only raises blood pressure but also activates the immunological messenger substance TGF beta on a previously unknown communication pathway in the brain.<<
>>PREMiSe Trial 
OK It is now official. Buffalo neurosurgery is running a small trial on CCSVi. The trial is over six month and is called the (Prospective Randomized Endovascular therapy in Multiple Sclerosis).The trial will consist of 30 patients all on disease modifying drugs, the sensible thing to do in my opinion. The reason, it minimise the risk and those that have the "Sham Surgery" will not be negatively effected. A wise decision, as this trial is design a blinded trial. This will definitely exclude the possibility of a "Placebo Effect"." Placebo" is a possibilty but highly unlikely in my opinion.
The first face is the safety face where angioplasty will be done on 10 patients to check safety on it.
In this trial 10 will receive the actual treatment for CCSVI while 10 will receive "Sham treatments" consisting only of a venogram.
Here is where a lot will go that is unethical, but it is the best way to find the end point as such. Does CCSVI treatment helps Ms or is it a angiotensin or other effect? Just a bit on angiotensin effect. Certain angiotensins regulate body temp (feeling of warm hands and feet) while others increase serotonin and endorphins, creating the feeling of well being. Dr Simka stated not to long ago that this could be a possibility. With the increase of blood flow over the brain Angitensens does increase as well. This will give a better direction to the "cause and effect". But if the trial does show positive results it will be done on the 10 that had the sham as such<<. http://www.themultiplesclerosis.com/breakingnews.htm
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Postby Drury » Sun Sep 05, 2010 1:00 pm


Really interesting.

I like the sound of increased blood flow having an effect on Angiotensin 111 and releasing ACTH - increasing production and release of corticosteroids without all the side effects of oral or IV's!!

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Postby Johnson » Sun Sep 05, 2010 3:33 pm

Gee, are we permitted to talk amongst ourselves while the good doctor devours dumplings?

The blood thinner angle is very interesting. The Marshall Protocol to treat disease-causing chronic bacterial infections employs Benicar - which is a sartan drug. Its action is an angiotensin receptor inhibition. It is reported that it alone relieves some symptoms. A shifting mix of low-dose antibiotics is then used to kill off the infection. There was a discussion on TiMS about this back in 2006, I believe. Interestingly, it is prescribed to halt Vitamin D supplementation, avoid foods fortified or high in Vit. D, and avoid sunlight until the infection is killed. There is some interesting research into it, and something I learned is that there are 2 metabolites of D3: D-25 and D-1.25. I cannot relate it fluently because of the pea soup fog in my brain, so here are some links;

Second-guessing the consensus on vitamin D

Presentation - Vitamin D induced dysregulation of nuclear receptors may account for higher prevalence of some autoimmune diseases in women

Professor Marshall is ridiculed because he is not an MD, even though he is published in medical journals. Kind of like our friend Ashton Embry. It can take up to five years to do the job, but what the heck? I am seeing a doctor this month - who has done the protocol on himself, and is also published - to begin after my next balloon job. It makes sense to me, as I have always believed that my own dis-ease was bacterial or parasitic (I've had amoebic dysentery, Giardia, E coli, worked in Lyme-endemic areas for years...). I was going to do a thread on it, but I still haven't even written a report on my first venoplasty, and now it is popping up.

My brain is full of pearls...
My name is not really Johnson. MSed up since 1993
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Bulgaria - Sofia CCSVI

Postby joana123 » Tue Sep 07, 2010 5:01 am

Dear Dr. Sclafani,

as I promised my appeared after the liberation process in Bulgaria - Sofia.
After examination it was found to have stenosis of both jugular veins of 90% and 30% azigos vein. Zamboni '' C '' typ. ( PPMS, dg. 2004. )
The doctors reviewed the discharge summary from hospital Dedinje, Belgrade-Serbia on the basis of which they found a lot of mistakes. I did not have bulbs or malformation of the carotid artery. Do restenosis could not come because they have not done anything to expand the veins.
But it's behind me.
To return to the procedure and the operation in Bulgaria.
So, as the veins of all was fine, successfully made a balloon dilatation in both jugular veins and has established normal blood flow. Discharged with therapy pradaxa and aspirin for a one month.
After 48 hours I felt significantly more energy and after the trip that lasted more than 12 hours I got up from the wheelchair and made a few steps, and so three times in the day. I returned for a period of five months ago. I was excited and a little scared. For the first time after eight years I felt that something is getting better.
And then the next day - nothing, until today when I again felt that I had more energy and again I got up from the wheelchair and made a few steps.
I am aware that it has been just seven days after the procedure and that I feel good that only a substantial improvement ... but I also want to walk again ...
What do you think of your professional experience, what would be my recovery?
Please advice whether it would be good to start off with massage and physical therapy?
Currently with Pradax taking aspirin and vitamin B, D, Omega capsules, and drink green tea to three cups a day.

Thank you and best regards,
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