DrSclafani answers some questions

[drsclafani]

Dr. S,

I hope you're having a wonderful time in the Adirondacks!

When you get back and have a chance to answer, here are my questions for you (and thank you again for taking so much time to educate and reassure us):

1. Professor Zamboni found almost no restenosis in the azygous veins of the CCSVI patients his group treated (according to the paper published approximately 1 year ago). Based on your experience and discussions with other doctors (or patients of other doctors), are you finding this typical? In other words, if a doctor who is experienced in treating CCSVI performs PTA on a patient's azygous veins, would it be fair for the patient to think that there is a very good chance that his azygous would stay patent for 6 months, 1 year, 18 months, or even longer?

it would be a guess
i will make an educated guess that the incidence of recurrence with azygos will be higher than dr z reported in his study. I cannot see why azygos woulod act much differently from jugular veins that are stretched and dilated.

2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?

it is a plausible explanation.

3. Based on your experience and discussions with other doctors (or patients of other doctors), are you finding that fixing flaps, membranes, or valves in the internal jugular has better, worse, or similar success rates (in terms of patency at 3 months, 6 months, 1 year, etc.) to fixing other problems with the internal jugulars? Obviously the only published research is Professor Zamboni's and he didn't publish statistics by type of internal jugular problem. I'm just trying to set appropriate expectations if in fact I have a flap or membrane or valve problem in my internal jugulars -- should I expect that patency at 6 months after PTA will be approximately 50% for these issues, just as Prof. Zamboni reported was the case with internal jugular problems as a whole?

i think that outcomes will be different based upon the type of abnormality or the combinations of abnormalities that are present. but also on anticoagulation profile, the level of disability present, etc

[nicknewf]

Dr. Sclafani,

Since your symposium, have the physicians who participated started to fall in line around a common treatment protocol? Balloon sizes? Order of treatment? It sounds as if there are many doctors performing the treatments; are most sharing information between each other - or are most people practicing in silos?

Thanks

[drsclafani]

ccsvi is a term coined by dr zamboni

chronic meaning occuring repeatedly over a long time
cerebrospinal venous pertaining to the brain and spine
venous insufficiency meaning that the venous outflow is insufficient for the needs of drainage.

he detects that by ultrasound which shows reflux up into the veins that should be draining down toward the heart


it is a diagnosis made by US. its consequences in the brain are a hypothesis. several patterns of insufficiency have been defined. how they reflect neurological effects is not yet clarified

But, please, Dr. Sclafani, how would you define CCSVI? Maybe as the presence of reflux into the brain and spine?

venous insufficiency is a problem of flow, valve function and reflux. it leads to inflammation of the downstream (in legs) or upstream (in brain) tissue. in other words the veins are insufficient to manage and regulate the flow in the veins back to the heart.

I mean, if somebody with yugular stenosis but not reflux is checked by you, Would you diagnosize CCSVI or just stenosis?

i would diagnose stenosis unless they had symptoms and had the stenosis for a long time

and what would you do in the opposite case (reflux without stenosis)?

i would treat the reaon for the reflux if i could.

there is a case report of a man who had a high flow venous graft for dialysis. because his valves were insufficient, he developed transient global amnesia. He was treated by closing the Arteriovenous graft used for dialysis surgically. his symptoms developed within days

[drsclafani]

I have taken pulse steroids due to a relapse two week prior to my scheduled angioplasty. Could this be a problem?

probably not but coagulation could be a problem, but your doctor will assess whether you can be treated and whether you need more or longer anticoagulationanticoagulation.

[Zeureka]

dear adam
have you ever had symptoms of MTS?swollen leg, tired leg, clots or thromboses of the calf or thigh?
i am not sure that all narrowings of the iliac vein need to be treated unless you have ccsvi in the lumbar or azygos veinous symptoms

Dear Dr Sclafani, thanks for being around even if not really being there - hope you still managed to relax a bit during some well-deserved hols this summer
In fact I was wondering about MTS symptoms - since understand MT is stenosis in left iliac: could this cause only symptoms in the left leg - or could MT cause symptoms in both left and right legs/feet?

And if you mention swollen legs, have a question about perceived and real(+perceived) swelling:

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.

[selkie]

Dear Dr. Sclafani,

Anti-histimines are often given to MS patients for treatment of nerve pain as well as allergies.

I have both allergies & MS nerve pain and don't want to take drugs like Neurontin.

Since histimines open the veins, but cause terrible symptoms (I experience shingles-like pain), and anti-histimines negate the symptoms but also restrict the veins, my question is,

Is it harmful for people with CCSVI to take anti-histimines? Does this cause even more back up of blood flow?

I take two anti-histimines per day (Zyretec & Allegra) and my pain is still about a level 7 on some days.

I can't do without the drugs, but I'm worried it's causing an even worsening of the blood back-up into my brain?

Can you clarify if my concerns are valid or are these drugs safe for people with CCSVI?

Thank you, Selkie

*****

[kaboodah]

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!

Renae

[vivavie]

Hello DrS, I finally got my stent unblock (candy wrap stenosis) AND:
70% left jug stenosis: balloon twice 8/10X40mm
50% right jug: balloon 3X (8/10/12X40 mm)
both in the area of prior radiation+ curietherapy and neck dissection from previous tongue cancer. He ALSO found a kink/irregularity in my Azygos 8X40mm (not checked in Poland)
It cracked - it poped - it hurt. (He also check MT and lombar =fine)

I was this doc 1st, he was pretty thorough (2 1/2hr) and he felt he did an aggressive job. Nice, competent, entousiast IR.

I was sure this time I was Fully Liberated but NO! Nothing:Pain -fatigue- brain fog are the same. headache increase.

What eludes me is my stent is now clear, how come I don't have the previous improvements I had for 6 weeks (bladder, saliva, bowel, no headache, sleep)? During the 1st procedure they only found a faulty valva.

What should be my next step? Is it possible that the veins did not hold their new shape? How about balloon size? lenght? Would it be a good time to use cutting balloon because those veins must be hardened by radiation?
I am not ready to give up yet! help!
Thank you

[KikiT]

Welcome back Dr.S!! Saw a quick mention of a Zego machine on the show The Doctors. They said that Columbia Presb. has one and it is the latest 3D IMAGING FOR VASCULAR PROCEDURES. Seems that this would be the perfect machine for CCSVI imaging? Is this something new or just TV hype?

[burg]

Does anyone remember what page Dr S. discusses extremities, like cold feet, and the brain having a "thermostat" that sort of, heats the blood after pumping thru the heart?? It was a while ago, and I've been looking.This thread has become the "Sclafani MS Encyclopedia"

Welcome back Doc!!!

[fogdweller]

Welcome back!! It is very, very good to have you back.

The issue of restenosis has been much discussed, and I was wondering, are restenosis issues much different in arteries and veins? Coronary Arteries, for instance, do not collapse, but apparently the jugulars collapse in the prone positition. does the contact between the sides of the veins present a problem if the veins have been stretched and expanded by ballooning? Would sleeping fairly upright for a time period be helprful?

Again welcome back. You must clue us in on the mystery of the serious matter you were discussing in the Adiroondacks.

[blossom]

hi dr. sclafani, i am still in awe that you have been gracious and kind enough to donate your knowledge and time to this site. thank you.

i was treated aug.3. from what i know they ballooned both juglars - the azygous was supposed to be ok but they said they worked on it a little. ? no may thurner. i'm a little in limbo. i was out cold and things were pretty brief.

immediately after recovery my left leg and foot was numb. "this is my better side". it has remained numb since. i am ppms with considerable disability, but numbness was not one of them anywhere. i did have some very small improvements for about 10 days but sadly they are gone.

actually i have more pain in my legs and feel worse in many ways along with the darn numbness. i called the treating doctor and she said that maybe where they went in it hit a nerve otherwise she would not know.

i had communicated with someone else that developed numbness and they found she had gotten a bad clot in her stent. i have no stent but could i possibly have a clot? i am on plavix and 325mg. asparin. the asparin has been standard for me as i have mthfr which is a genetic thing that makes me more suscepitle to heart attack, stroke and blood clots. i did tell the treating dr. about that.

the treatment facility is about a 11 hr. drive and my follow up 3 mo. do you think i should be concerned about this possibility? what do you suggest? did this ever happen to anyone you treated or have you heard of cases that numbness developed immediately and persisted? thank you.

[Cece]

Does anyone remember what page Dr S. discusses extremities, like cold feet, and the brain having a "thermostat" that sort of, heats the blood after pumping thru the heart??

That was awhile back and I'm not sure if Dr. Sclafani weighed in on it much; it was more my theory that slowed perfusion was affecting the hypothalamus's ability to regulate body temperature. It also harkens back to mrhodes and what she'd found on 'emissary veins.' A competing theory is that the impaired thyroid could be affecting thermoregulation. I checked the index but no luck....

Here's what DrS had to say about cold feet back in March:

I have one question in mind, and its about cold hands / feets. I have noticed that many patients say after liberation procedure that "now my hands feel warmer", etc. What is the scientific explanation for this? How stenosis or flow problems in jugs or azygos relate to cold hands or feets?

My wife has usually cold hands and sometimes they suddenly go warm and quite red. Im wondering why?

The manifestations of MS depend upon which neural tissue is demyelinated. Some have weakness, some have sensory to one area, others to another ara.

I suspect that the cold hands and feet may be a manifestation of sensory damage OR due to damage of the autonomic nervous system that controls constriction of the blood vessels, sweating, etc.

The other day, one of my patients told me that immediately after her treatment her hands were sweating, something that she had not done in many years. The speed of the effect suggests placebo or a vascular autonomic effect. Sometimes vasoconstricting to reduce blood flow and feeling quite cool, othertimes vasodilating and increasing blood flow and feeling quite warm

[Drury]

Hello Dr. Sclafani,

Hope you got a chance to rest and enjoy your holiday.

My daughter went to Albany last week for an MRV only as we live in NY(she is on your waiting list and we live in hopes) and was told that her jugulars looked fine and that her azygos seemed OK although he could not see it completely. He also said she may well have reflux but he did not know what could be done about that. She was also treated by a chiropractor for gentle neck realignment (he is an Atlas Orthogonist)about 2 weeks prior for neck pain and he said he was pretty sure she would not have a problem with blood flow as he had just readjusted her neck.

Was it foolish to just have an MRV? Could the chiropractor be right? If there is reflux doesn't that mean there is stenosis?

Thank you for taking time to answer our questions even though you have only had a short break - i just hope you know how much we appreciate it.


Drury

[vivavie]

sorry to butt in Drury, this is normally Cece job, but I just finished watching Dr Zamboni presentation in Sardaigne and he repeated a few times that MRV is NOT an appropriate test for CCSVI.


Got it from another tread that just started.