DrSclafani answers some questions

[CCSVIhusband]

Dear Dr Sclafani,
I was also tested (mrv only) and based on the findings treated by Dr Vogl in August. LIJV, 40% and RIJV, 10% blocked very high, the azygous was judged to be in order but was also run through quickly after the ballooning to 'be sure'. I experienced immediate lack of fatigue and improved mental clarity (which I hadn't been aware that I was lacking) There was initially improved muscle strength in the legs and much better bladder symptoms which quickly faded.

I am wondering whether, considering Dr Tariq's experiences with azygous irregularities, if azygous problems might be being missed, particularly when only a mrv is done for diagnosis. I think there would be no identification of flow disturbances, if I understand correctly. Perhaps, flow disturbances are also being discounted since some blood is getting through anyway.

Can you please comment?

There is NO evidence that MRV correlates with CCSVI. I have seen excellent MRV by Dr Haacke that are starting to show nicely the anatomical problems of the veins but some of these findings are not seen by MRV, nor by catheter only by IVUS or compliant balloon inflation testing as described by tariq sinan.

i think that these azygos webs are a great challenge.

What is an azygous web doctor? Define web if you can please.

[dunkempt]

newfie-girl
I was told at Barrie that most problems show up at around the 3-month point; AFAIK people who get stents are pretty much always prescribed blood thinners (my prescription for Plavix was 1 year recommended, 3 months for sure) - so that wouldn't change this equation.
If there IS a problem it might be better to know about it at 3 months than to wait (while damage is being done) for 6 months.
On the other hand, that is what I did - but the practicalities were a little different for me last June than they are now.
-d

[fogdweller]

For anyone actually looking for drsclafani in the drsclafani thread, he has the SIR group meeting tomorrow, we might not see him here for a bit?

i am home. it was a very stimulating meeting but i cannot speak about details

Are you going to issue a report, and where can we look for it?

[fogdweller]

you will have to wait. because there is a confidentiality agreement pending publication some time in the future.

I just saw this on another thread. Can you report on general info, not papers to be published, or is there a cone of silence over the whole thing?

Another impatient patient.

[Johnson]

It is not an inflammatory process in the veins. but a malformation. marlforamations occur in the fetus

Sending you a PM, Doc.

[Donnchadh]

Dr. Sclafani,

After watching Dr. Sinan's impressive presentation at your conference, I am wondering if you are planning to adopt his "aggressive" techniques?

I just got the IR's records concerning my second procedure, and he recorded that he inflated the balloon to 7mm x 20mm. If remember correctly he just tried 3 inflation cycles. So I am thinking he was being extremely conservative; especially compared to what Dr. Sinan is doing.
I was amazed when he said that he used cutting balloons, and in some cases, inflations of 14mm, 16mm, and even 23mm!

Donnchadh

[CCSVIhusband]

Dr. Sclafani ... I think this has probably been answered before (if it has can someone point me in the right direction) ... but can you tell us the diameter of the following veins (an approximation is fine)

internal jugular veins

azygous vein

hemi-azygous vein

vertebral veins

lumbar veins

left common iliac vein

inferior vena cava

... just for reference since not many of us (other than you) have ever seen the inside of these veins to know how big or small we're talking about.

[msgator]

Hi Dr. Sclafani,

I had the pleasure of having my two stenosed jugular veins angioplastied last Friday by an amazing team of Dr., nurses and ultrasound techs. All had taken the time to really educate themselves about CCSVI, and this was in the States.

As I was waiting the two hours post procedure for the incision to heal sufficiently to let me go some interesting ideas were discussed and I would love to get your take on them.

1. MS patients response to sedatives and painkillers. The nurse said they are finding that they have to use higher doses on CCSVI patients to get the same effects they would have with a non CCSVI person. What they thought should knock out a person of my size did next to nothing. (Fine with me, I wanted to be with it) At first they thought LDN in the system might have something to do with it, but they are finding that is true for non LDN users also. (myself included)

However, I could barely keep my eyes open at the end of the two hour supine period, slept all the way home (1 hour 15 mins) and then slept all afternoon.

What are your thoughts??

2) Reflux. Most of my MS problems are on my right hand side so I assumed that my worst stenosis would be on the LEFT doing the damage to that side of my brain. Well I was WRONG. My left IJ was 50% stenosed and opened with a crackling noise and took no time, my right IJV was 75% stenosed and required in the end an 18mm balloon and is still not completely smooth, but the flow is good. However the stenosis in my right IJV caused blood to reflux into one of my facial veins AND the left IJV, which could explain more brain damage on the left hand side could it not???

Again, insight is appreciated.



Ann

[NZer1]

Dr. have you seen this?
Two new papers from Dr. Chung--
by CCSVI in Multiple Sclerosis on Wednesday, October 20, 2010 at 4:11am

Extract from Joan's article;
Cerebral venous outflow insufficiency via the internal jugular vein (IJV) is associated with several neurological disorders. However, a normal reference set of IJV hemodynamic parameters derived from a large, healthy population over a wide range of age has, until now, been lacking. Color-coded duplex sonography was performed on the IJVs of 349 subjects (55.60 ± 17.49,16 to 89 y; 167 M/182 F). With increasing age, increased lumen area and decreased time-averaged mean velocity of bilateral IJV and a decreased proportion of total flow volume, drainage in the left IJV were found. The frequency of left jugular venous reflux (JVR) also increased with aging. We report IJV hemodynamic parameters across a large population, which could be used as a normal reference for clinical and research purposes. Furthermore, we found a decreased proportion of venous drainage, increased JVR prevalence, dilated lumen and slowed flow velocity in the left IJV, all of which suggest increased left IJV outflow impedance with aging. (E-mail: hhhu@vghtpe.gov.tw)
http://www.ncbi.nlm.nih.gov/pubmed/20800950

[Cece]

1. MS patients response to sedatives and painkillers. The nurse said they are finding that they have to use higher doses on CCSVI patients to get the same effects they would have with a non CCSVI person.

Just to chime in, this has been true for me too. My theory is that it's that MSers have an overexpression of sodium channels. (The 'boosts' in the nerves, like driving over an acceleration square in a racing video game.) Only a theory.

I pm'd newfie-girl, we have seen people restenose while on blood thinners.

a previous comment on webs:
http://www.thisisms.com/ftopicp-113632.html#113632

i imagine that a web is really a valve leaflet that may be like the lid of a trashcan. depending upon circumstances it might cause terrible flow limitation, but a catheter can push it out of the way and lead to a missed diagnosis. I have found one that was really thin, almost imperceptible and seen on only one of four views. The other was really thick and shocking in its appearance. The part that was attached to the wall was like a pinky jutting into the lumen of the blood vessel. Angioplasty may or may not work. I just do not have sufficient long term experience to know yet.

Dr. Sclafani, any idea if these azygous webs are relatively rare or relatively common? If you found two out of twenty patients, that would be 10% right there. I know it's too early to run with that figure but ... catch me if you can ... that would mean that 10% of people treated by the typical methods have a missed azygous web. I think it may well be higher than that but even going with that figure, that is a huge number of people who are not fully treated!

[NZer1]

Dr.S thought this might help the cause, I asked this question on the
CCSVI and CCVBP thread,
Dr's F and K, I have had a realization!.
With your skills knowledge and training you may be the missing link in MS in more ways than one. With the resistance from Neurology with Vascular involvement in MS, it has become near impossible to have a team onside for evaluations before and after treatment of veins and for the follow up assessments.
Are you able to do assessments of patients?, I was involved in developing the surveys for Dr. Scalafani and we were very aware that the options used currently by 'Specialists' are not addressing the disabilities in MS, and not transferable and cost effective.
Can you both give this some thought and let me know please.
Regards Nigel.
And the reply from Dr. F;
Nigel, For pre and post checks on objective signs I would recommend standard neurological tests including: station (eyes open and closed while standing on two legs and one leg) and gait (sobriety test etc); cranial nerves, normal and pathological deep tendon reflexes; simple sensory pinwheel and brush tests as well as muscle tests to check strength and coordination.
I was in a study group many years ago where one of the chiropractors used plethysmography and doppler scans pre and post adjustments. It is good tool that would be handy in deignated research facilities.

[katie45]

Dr. Sclafani, Thank you for your invaluable expertise and generosity in the sharing of it.
You mentioned followup being taken care of in canada.I was treated in san diego on sept 28 and will seek followup in the next months.I am in BC..and wonder if you have a suggestion for followup close by? thanks so much, kathy

[drsclafani]

Hello all, I have a quick question, if we are taking Plavix or any blood thinner for 3 months, is it unlikely that you will stenose, while on them, or have people stenosed during the 3 month period, while on blood thinners, I am trying to decide wether to go for my follow-up in Barrie, as it has only been 2 months, post-op and i am struggling with this issue.
I guess what I am asking is, wouldn't you have a better picture of blood flow, if you wait for a period of time, after no blood thinners are taken, to check for blood flow and stenosis.

I have to travel a long distance, and really question, wether or not I should wait for at leasr 4-6 months post-op.
Dr. S or anyone who can rspond and shed some info, I would be truly greatful.
Cece, can you remember reading any stats on this ie: stenosis while on blood thinners and what happens once we stop taking them?

Thank you all.........Chris

Chris
lets review quickly blood "thinners" we call them antiplatelet therapy or anticoagulant therapy
Antiplatelet therapy, with aspirin and plavix, reduce the stickiness of platelets. Platelets become sticky when the inner lining of the blood vessel is torn and the blood is exposed to the muscle layer of the blood vessel. If these platelets stick to the wall, they create turbulence that results in clot formation. Antiplatelet therapy attempts to reduce the platelet adherence to the blood vessel wall that is damaged by the stretching with the angioplasty balloon.

Anticoagulation therapy alters the ability of the blood to clot by blocking some part of the pathway that leads to blood clot. It is most frequently used to treat blood clots to prevent propagation of more clot. Prophylactice anticoagulation is used to attempt to reduce the risk of forming clot in the first place.

These two methos of "blood thinning" are not mutually exclusive and are often used in combination.

So you ask, when should you have your follow-up doppler study. I think that surveillance is on going. If you develop symptoms of clotting, pain and swelling of the neck, or symptoms of restenosis, such as a return of symptoms after improvement, i thnk you should get an ultrasound.

in the absence of symptoms, i want my patients to have a followup ultrasound at one month, three months, six m onths, 12 months and every six months after that.

my goal is to detect restenosis BEFORE you develop symptoms. Symptoms are bad, recurrent CCSVI cannot be good, otherwise you would not have had angioplasty in the first place.

So why 2 months? I dont know. it is a choice of your doctor.

I guess the bottom line is that you should expect to have surveillance ultrasounds periodically for a long time after treatment. Hopefully they will always turn up normal,

[drsclafani]

Dear Dr Sclafani,
I was also tested (mrv only) and based on the findings treated by Dr Vogl in August. LIJV, 40% and RIJV, 10% blocked very high, the azygous was judged to be in order but was also run through quickly after the ballooning to 'be sure'. I experienced immediate lack of fatigue and improved mental clarity (which I hadn't been aware that I was lacking) There was initially improved muscle strength in the legs and much better bladder symptoms which quickly faded.

I am wondering whether, considering Dr Tariq's experiences with azygous irregularities, if azygous problems might be being missed, particularly when only a mrv is done for diagnosis. I think there would be no identification of flow disturbances, if I understand correctly. Perhaps, flow disturbances are also being discounted since some blood is getting through anyway.

Can you please comment?

There is NO evidence that MRV correlates with CCSVI. I have seen excellent MRV by Dr Haacke that are starting to show nicely the anatomical problems of the veins but some of these findings are not seen by MRV, nor by catheter only by IVUS or compliant balloon inflation testing as described by tariq sinan.

i think that these azygos webs are a great challenge.

What is an azygous web doctor? Define web if you can please.

The azygos venous system is a series of veins that drain the back and spine and spinal cord into the great veins leading back to the heart.

These veins are formed by conversion of the embryonic system, the cardinal veins, into the mature azygos system that goes on into adult life.

in the process of that conversion, it is possible that remnant tissue results in a tangle of fibrous bands that are very difficult to see but can inhibit drainage of the azygos vein. The operative words are very difficult to see by any testing.

[drsclafani]

For anyone actually looking for drsclafani in the drsclafani thread, he has the SIR group meeting tomorrow, we might not see him here for a bit?

i am home. it was a very stimulating meeting but i cannot speak about details

Are you going to issue a report, and where can we look for it?

fogdweller
we had a long full day of discussions, nothing was decisive. we will review the minutes and make comments and slowly and surely make some recommendations about how to proceeed with research on the topic.

i cannot discuss things that were said in confidence.