Dr. Sclafani answers questions about treatment, restenosis, and clotting by CCSVI at UBC MS Clinic - Information and Support on Saturday, November 13, 2010 at 11:51pm - facebook prikbord

Dr. Sclafani’s responses to questions posted on ThisIsMS.com (from Nov 12 back to approx Oct 18)

by CCSVI at UBC MS Clinic - Information and Support on Saturday, November 13, 2010 at 11:51pm

I pulled together some of Dr. Sclafani's recent answers to questions
posted on the CCSVI forum at ThisIsMS. Dr. Sclafani has dedicated

himself to understanding CCSVI and helping patients understand this new

condition. Based in Brooklyn, NY, Dr. Sclafani treated approximately 20

patients before deciding this area needed more research. He awaits

approval for his own CCSVI study and is a founding Board member of the

Intervascular Society of Neurovascular Disease.

~Sandra

blossom wrote:

dr.sclafani, this question may have been answered somewhere already. ? after
angioplasty only how long should i be concerned about clots developing

or scar tissue. i know people can get restenosis probably anytime and if

so does it seem the restenosis is worse or has that been established?

i got a reg. doppler done here in my hometown "not zambonni type" they
say no clots and i have flow. this was done two mo. after procedure as i

was concerned because i got a numb leg immediatly after procedure and

still persist. any very small improvements have gone. except, a

persistent pain that when in bed it would go up the back of my head very

often. about 5 days after procedure it was very severe for just a short

time and i have not had it since.

anyway, how long should i be concerned? and if i would pursue this again does it look
like there are things coming up that will reduce these risks?

it has been 3 mo. since procedure and i actually feel worse and symptoms are worsening.

i had emergency appendix surgery oct 2 and i know it knocked me for a loop too.

drsclafani wrote:

i think that restenosis is a life long concern with any venous stenosis.
Thrombosis is most likely to occur within a few months of the procedure,

although restenosis could also cause thrombosis whenever it occured.

+++++++++++++++++++++++++++++++++++++

It seems the valves were there for a good reason in the first place to
only improve flow will not stop reflux, which will occur to some degree

in normal life, caused by movement of the neck as one example.

drsclafani wrote:

The purpose of those valves, for those readers who are unclear, is to
prevent flow from the heart from backing up into the jugulars and then

into the brain. The valves also encourage flow in the direction toward

the heart. Since these valves are absent normally in about 15% of

unaffected humans, reflux from heart back into the jugulars does not

commonly cause problems because the refluxed blood likely travels up to

the dural sinuses and then returns to the heart. There are reports of

serious problems, such as transient global amnesia that occurs from this

type of reflux.

REMEMBER THERE ARE TWO TYPES OF REFLUX,

ONE WHERE BLOOD FLOWS BACK FROM THE HEART AND UP THE JUGULAR VEIN

AND

ONE FROM THE BRAIN, DOWN TO THE VALVE AND BACK UP TO FIND AN ALTERNATE PATHWAY OUT.

We have to keep them straight when we talk about reflux.

The symptoms from reflux seem to me to be the same as MS symptoms and the
symptoms that are found in diseases involving blood flow issues from the

brain of patients that haven't been dx'ed as PwMS are the same.

drsclafani wrote:

i am of the opinion that some of the symptoms in patients with MS may be
symptoms of CCSVI and other symptoms might be related to demyelinzation

and other brain damage. The two entities might actually coexist.

+++++++++++++++++++++++++++++++++++++

newveins wrote:

I was sore and a little stiff for several weeks but not swollen.

Ok thank you newveins. Means I need to keep an eye on the swollen feeling,
and only worry if it becomes obvious to the touch. I have emailed the

clinic now anyhow, better safe etc.

Thank you though, you are the first person I have come across to have felt
any soreness apres procedure at all! Which is why it's been concerning

me a bit xx

drsclafani wrote:

get an ultrasound of your neck

+++++++++++++++++++++++++++++++++++++

PCakes wrote:

I have an endocrinologist appt in a couple of weeks to assess thyroid
nodules that were uncovered during my doppler scan.. I plan to pose the

question of the commonality of thyroid issues in MSer's. To ask how

this, in his mind, might be linked to blood flow issues.

I was hoping that any/all of you out there might respond with yay or nays
on thyroid issues..I've read other accounts here of doppler nodule

discoveries. Makes some sense, to me, that this could be yet another

organ compromised by low flow..

drsclafani wrote:

if you look at something you will see something. Thus thyroid nodules are common and you have found yourself one.

Dr. Salvi told me that he believes that high flow venous collaterals drain
through the thyroid when the jugular is obstructed. and that this leads

to a thyroiditis, that results in hypothyroidism in many patients.

+++++++++++++++++++++++++++++++++++++

It is my impression that the IJV blockages are the low hanging fruit of
ccsvi treatment. Dr Sclafani, can you comment more on the azygos issue

and its diagnosis, treatment and implications. I have heard some claim

that azygos issues are more common in those with lower body mobility

problems.

drsclafani wrote:

they are easier to recognize because we have more experience looking at
jugular veins. the azygos is a sort of stranger. The images are not as

good, the findings are often subtle. Some cannot be recognized by

venography, ultrasound, IVUS, or MR venography. They are very enigmatic.

that vein is also in the middle of the chest. so if it ruptures during angioplasty, i would be very unhappy. I
cannot put my hand on it and apply mild pressure. its too deep. given

that patients are anticoagulated, i worry and do not yet want to just

dilate it because it is there.

Are patterns being identified correlating blockages/disrupted flow with any
symptoms. Maybe ijv with fatigue or mental fog? azygos? what about

sigmoid sinus? Is there a connection with any blockages and lower

extremities swelling--many experience feet or ankles swelling? It could

be a totally unrelated issue.

drsclafani wrote:

there are patterns of vein problems related to type of ms. PPMS was shown to
have a higher incidence of azygos abnormalites by the zamboni group.

+++++++++++++++++++++++++++++++++++++

NZer1 wrote:

Dr, Joan Beal has been posting about blood testing lately can you talk to
us about what we need to be aware of when choosing a treatment provider

and what we need to be having done for the follow up period/time?

Thanks Nigel.

Quote;http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/please-read/454425162210

Patients who have angioplasty need a very specific blood thinning regimen
tailored to them, and this needs to be followed by a doctor who can test

INR and PT (coagulation numbers) Many people have angioplasty and have

no idea they have hypercoagulation before being treated....this is a

terrible problem.

drsclafani wrote:

Sounds like Joan is speaking about coumadin, also known as warfarin, commonly
also used as a rat poison. It is potent and requires periodic blood

testing to make sure that the dose is proper but not too high. The PT

and INR are the testing done. The drug itself is not expensive, but the

testing increases the cost. I would think Joan is talking about it

because her husband has stents and these require longer term

anticoagulation to reduce the risk of thrombosis of the stent. 6-12

months of treatment is often given.

Other doctors, such as myself, who do not use stents and treat mostly with
angioplasty, treat shorter term to allow healing of he angioplasty

stretching while reducing the shorter term risk of thrombosis. Some of

us use antiplatelet drugs such as aspirin and or plavix also known as

clopidogrel. There are inhibitors of platelet stickiness and aggregation

that can be the beginning of a blood clot. Treatment is usually for

about three months. There arent very practical tests to follow this

effect.

I myself, have been treating with fondaparinux, also known as Arixtra. It is a thrombus inhibitor
similar to heparin but a safer and more practical medication. It is

administered once per day in the abdominal fat, much like copaxone. I

give it for 20 doses, the first one before the procedure. There are no

practical tests that are needed during this short interval. It is

expensive, but the safety margin is worth the cost. the risk of bleeding

is less than heparin or lovenox.

+++++++++++++++++++++++++++++++++++++

NZer1 wrote:

Dr. S it appears that people with functioning valves in the blood return
flow to the heart don't have symptoms that have been associated with MS.

It appears that people without non return valves to the brain accumulate symptoms associated with MS (over long periods of
time).

It appears the body has found ways to return blood flow to the heart called collaterals which appear to overcome back
pressure as the persons blood pressure is not raised.

Is it possible that the issue for PwMS is simply that the blood is not
restricted from back flow to the brain. If there were working valves to

stop the blood flowing back to the brain the malformations would not

need to be angioed?

If surgeons have been able to replace heart valves is it possible that replacing or installing valves
will be the resolution of back flow/reflux issues for PwMS.

Regards Nigel

drsclafani wrote:

BINGO! almost

Firstly, the blood would not need to go through collaterals if there were no
obstructions. Fifteen percent of normal patients dont have valves on

autopsy. So the problem for most people is not the absence of valves.

Its the outflow obstructions

Secondly The problem is that the jugular veins are not the heart. Half the time
there is hardly any flow in them when they are normal. putting in

foreign bodies like valves or stents might make them prone to clot off.

Same with surgery on those veins. sometimes they clot off.

The trick is to get them open. That what we are trying to do.

+++++++++++++++++++++++++++++++++++++

SickButHappy wrote:

Long time reader, first time writer No words would describe how thankful I am for all this informations...

Had the procedure done in Albany last August. A real success, my life has
changed. 3 months in a couple of days, that's a long placebo effect

I'm from Canada. Cannot get the doppler under Dr.Z protocol done locally.
Was lucky enough to have a local IR to perform a regular doppler. Was I

right to think that it might not be the best follow-up scenario, but if

there's something major (like a thrombosis), he would catch it?

Very kind man, felt reassure when I met him. He also suggested to avoid
stents if possible and prefers multiple angioplasty. Can't wait not

having to pay for it everytime though!! He was pleased to tell me my

angioplasty had been nicely done

drsclafani wrote:

yes a regular duplex scan of the jugular vein would tell you whether you had thrombosed.

However, we need a measure to assess whether the vein is restenosing BEFORE it
would thrombose or result in a relapse or deterioration. So we have to

get the people doing the ultrasound to learn how to do a CCSVI

ultrasound. It isnt rocket science, just takes some effort to see a

different way

+++++++++++++++++++++++++++++++++++++

fogdweller wrote:

Can a properly done doppler distinguish between restenosis caused by
structural renarrowing and thrombosis? How is thrombosis caused

restenosis treated?

drsclafani wrote:

Ultrasound of the jugular vein is a common method of diagnosing thrombosis of this
vein. We perform these studies all the time. No special techniques are

necessary.

The vein that has flow is compressible. So when you push down on the vein, the walls come together
and the vein is narrowed. When the vein has thrombosis, it is filled

with echogenic material and the vein is not compressible.

Restenosis is effectively a narrowing of the vein. it results in signs of ccsvi

Techniques attempted to recanalize the thrombosed vein include thrombolytic agents
such as tPA to dissolve clot and/or mechanical devices that pull clot

out. Some doctors put stents in there as well. Surgeons can pull clot

out as well.

+++++++++++++++++++++++++++++++++++++

saks wrote:

Dear Dr S:

I'm wondering if it's possible or likely to get vein thrombosis after CCSVI
ballooning- no stents. I read about it. How can this happen?

Thank you very much.

Synthia

drsclafani wrote:

it is possible to get thrombosis after ccsvi ballooning.

it happens when slow flow is present and the inner lining of the vein is injured, as it always is, after angioplasty;

Stasis. ie slow flow and activation of the clotting system by intimal damage, result in thrombosis.

Zamboni and I both recommend anticoagulation to reduce the risk of clotting
while the vessel is trying to heal itself after angioplasty. Some use

antiplatelet drugs such as aspirin or plavix, but i use fondaparinux, a

artificial heparin like material that is effective but safer that

coumadin, heparin or lovenox. it is given by injection once a day into

the abdominal fat. I start it immediately before i perform the

procedure.

+++++++++++++++++++++++++++++++++++++

pklittle wrote:

Since each Dr. treating CCSVI seems to have their own twist (no pun) on how
to test, pick the balloon size, etc, what advice would you give a

patient that has been treated with venoplasty but had no relief of

symptoms? More specifically, would it be worthwhile to seek treatment

elsewhere by someone who is also experienced but who's approach is a bit

different?

drsclafani wrote:

i think that the next step is to determine whether there is or is not
improvement in the Doppler results. If the Doppler is the same, i think

another opinion is valuable. if the doppler shows eradication of the

ccsvi criteria, then perhaps the brain damage is too great. but of

course this decision is between patient and doctor

Dr. Sclafani, thanks for your reply. I am going to have an ultrasound
tomorrow! I am embarrassed to ask... are all ultrasounds Doppler?

I am glad to be having the test, but I am concerned because:

1) I don't know if the technician knows squat about CCSVI and how to check for it. I am having the test locally.

2) The local doctor to receive the results does not have a prior Doppler
to compare it to.. so who's to say if it is the "same" as anything

before or after angioplasty I had in June?

drsclafani wrote:

this is an extremely good point. i would not just get an ultrasound. it
would be an ultrasound with color doppler and it must be done by someone

who has experience and understanding of the zamboni techniques; i go on

record that treating patients without setting up the methodology of

using doppler ultrasound after the procedure needs to be addressed. Once

could argue that one should not undergo this treatment unless one has

attained connection with the ultrasound lab willing to provide the

zamboni technique of ultrasound.

IT IS AN AREA THAT YOU NEED TO HAVE SOME ACTIVISM ABOUT. YOU, THE CONSUMERS,
WOULD NEVER BUY AN ELECTRIC CAR IF YOU DIDNT KNOW THERE WAS A PLACE

WHERE YOU COULD CHARGE THE BATTERIES.

WORK LOCALLY TO ASSURE THAT YOU HAVE A CENTER THAT WILL DO THAT. USE YOUR
POCKETBOOKS AND WALLETS TO VOTE FOR ONE OR TWO LABS THAT WILL PROVIDE

WHAT YOU NEED

okay, i can get off my soap box now

+++++++++++++++++++++++++++++++++++++

spiff1970 wrote:

Dear Dr. Sclafani,

Here is my situation... I've done the procedure in July the 8th to correct
stenosis in the LIJ and RIJ and three in the azygos. Dr. Martins Pisco

put a stent in my left jugular and did angio in the right and in the

azygos. I felt some small improvements right afterwards but they resumed

one week after. In September, I experienced a small relapse and did a

course of steroids. I have talked to Dr. Pisco about this and he thinks

that there might have been some restenosis, probably in teh right

jugular. I have agreed to go back later for a new procedure in which

he'd probably put a stent in my RIJ.

What's your opinion on this? I understand you oppose stenting but in what grounds?

drsclafani wrote:

There has yet to be a publication on the long term effects of stents in the
jugular vein. I know of one soon to be publication that shows that

stents do not migrate, but thromboses seem to be occuring more so from

stenting than balloon angioplasty. My major concern is that in the

upright position (greater than 50% of the teim) there is little flow

through the jugular vein. A blood vessel with no flow and a foreign body

seems like a set up for thrombosis. But time will tell.......thus i

choose to have someone other clinician and their patients make that

analysis. For me, i will just redilate as often as necessary.

I think that part of the reason for the relapse is not restenosis but
inadequate angioplasty that never creates sufficient stretch to tear the

abnormal collagen and valves.

The rate of restenosis in jugulars has been quite high and many people are
flaring as they renarrow. Is there a better alternative? Thanks for

your attention.

drsclafani wrote:

yes actually

1. better technique of angioplasty

2. use of less stents

3. conservativism (less ballooning) toward high narrowings

4. aggresiveness (larger diameter balloons) toward lower narrowings

5. vigilant surveillance by ultrasound at one, three, six , twelve and eighteen months

6. liberal repeat angiography to try to avoid relapse once surveillance shows recurrent ccsvi BEFORE relapse

+++++++++++++++++++++++++++++++++++++

Cece wrote:

Dr. Sclafani, Since each Dr. treating CCSVI seems to have their own twist
(no pun) on how to test, pick the balloon size, etc, what advice would

you give a patient that has been treated with venoplasty but had no

relief of symptoms? More specifically, would it be worthwhile to seek

treatment elsewhere by someone who is also experienced but who's

approach is a bit different?

drsclafani wrote:

The figure that was posted in the forum the other day, that Dr. Sinan was
finding and correcting azygous issues in 95% of patients, is startling

if it can be verified.

drsclafani wrote:

Some treating physician recently described the sinan balloon inflation
technique of discovering azygos vein malformation as Radiologic Braille.

I didnt like the pergorative term but lets face it, we need to validate

this. No one has ever done this in normal adults

While I agree with what Dr. Sclafani said above about the Doppler findings
for the jugulars, the azygous cannot be imaged outside of a catheter

venogram, and the azygous is an area in which the different docs have

different techniques and expertise.

drsclafani wrote:

the doppler measures hemodynamic effects of abnormal venous return from the
spine and brain. Abnormal doppler has been shown to be associated with

azygos flow. Not to say that the doppler images the veins of the spinal

cord anatomy. rather it measures the hemodynamics.

These are difficult decisions for people. They have spent considerable money,
gotten disappointing outcomes and need to have some reason to double

their financial hit without guarantee of improvement at this point. That

is what i mean about the decision between patient and doctor

+++++++++++++++++++++++++++++++++++++

mlrm wrote:

Dr. Sclafani,

Its Marie Louise from Denmark! You treated me back in March 2010, by
openeing both the right and the left jugular vein. I felt great and

almost all of my symptoms disapeared!

drsclafani wrote:

marie Louise: I could never forget you! You were inspirational for your
hopefulness, courage and gentleness., not to mention your beauty (which i

just mentioned)

As you may remember my right vein collapsed on the airplane back home to
DK. I felt it right away by experiencing almost fainthing, extreme

dizzyness, extreme fatigue and intense heartbeat.

drsclafani wrote:

how could i ever forget. transatlantic travel for liberation is not without risks.

In June I had the right vein opened again, with balloon, in Euromedic
Poland. No Probs for 3 months. I had a great summer without fatigue,

dizzyness, intense heartbeat, pain and so on.

drsclafani wrote:

that was great. so it wasnt thrombosis? Thats a relief. just a simple case of restenosis.

No doctor believed that going on an airplane could be the cause of the
collaps. So I chose to travel again for a vacation we had bought back in

January. Destination: Rome.

Know you might guess what happened in Fionicino airport? Yes!: almost faingthing,
extreme dizzyness, extreme fatigue and strong heartbeat. Can you

imagine our trip to the Vatican

drsclafani wrote:

I do not think the plane ride did this. I think it was the inadequacy of
the venoplasties, both the american and the polish varietes.

Anyway: Simka scanned my veins again and says that there are problems in both
the right and left side. I am going to have the procedure newt monday (

the 15th of Nov.). Since I refuse to have a stent, Simka started talking

about cutting balloons.

My QuestionS to you: I never heard about anyone having the procedure three times. Do the risks increase everytime they do it?

drsclafani wrote:

yes, i think you should have it, you are surely an improver after the
angioplasty. I think the risks are the same. Unfortunately i think the

results will be the same.....initial improvement then recurrent symptoms

when the valve restenoses.

Do you think a cutting balloon might help me, or should I just stay away from airplanes?

drsclafani wrote:

my original forays into this used 10 mm balloons because i wanted to
follow the zamboni protocol as much as possible before venturing out

into uncharted territory. Restenosis was common...i thought we were not

dilating wide enough.

Gradually going from ten mm balloons to cutting balloons and 14 mm balloons but still not satisfied.

Frankly, i do not think that cutting balloons are going to work. The largest
commercially available cutting balloon i have is 8 mm in diameter. i do

not think it made a difference after all. Others have used "poor man"

cutting balloons using regular guidewires pressed against the wall by

balloon catheters together to attempt creation of a better device.

Perhaps they will work. I am currently looking at 16-22 mm balloons in

attempts to exceed the elastic recoil of the narrowed segment.

+++++++++++++++++++++++++++++++++++++

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?

drsclafani wrote:

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.

drsclafani wrote:

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.

+++++++++++++++++++++++++++++++++++++

newfie-girl wrote:

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

drsclafani wrote:

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,

+++++++++++++++++++++++++++++++++++++

very grateful for real doctors like you who are actually interested in helping make things better.

Please forgive me if you have answered this before. I have MS, and it is mind
blowing (at least for me) to read back over 245 pages.

Background information - I have been doppler tested, found to have no known
stenosis that could be seen, but I do have reflux or 0.95 seconds and

0.89 seconds in each jugular. ***** Doppler also found to be a Complex cyst measuring a.Gem x 1.0cm in the right lobe of the thyroid. *****

I am to be re-tested at University of Maryland by Dr. Haskal and Dr. Jade Wong's staff this Thursday Oct 21.

I have heard of other MS/CCSVI patients also were found to have cyst's on their thyroid. Just so you know blood tests show my thyroid to be normal. I do
<span>not</span> have hyperthyroid or hypothyroid problems.

I understand collateral veins may be re routing things through my thyroid. Can you see this on a doppler?

I've heard these cysts, may be related to CCSVI. Could they be? Has this
been found and noted by doctors who are treating CCSVI? Did Zamboni

write anything on this?

Thank you SO much for being here and all you do.

Judy

drsclafani wrote:

Collateral veins through and adjacent to the thyroid are commonly seen

if CCSVI happened to scan the breasts, lots of cysts would be found. not
because of ccsvi but because breasts have cysts. Same with the thyroid.

many thyroids have cysts.

dr Salvi, Dr. Zamboni's neurologist partner, has suggested that venous insufficiency
may lead to an inflammatory reaction in the thyroid as well

but listen, this stuff is complicated. There are lots of suggestsion, much
of which needs to be validated by investigations which we have just not

had enough time to design, let alone perform

+++++++++++++++++++++++++++++++++++++

Donnchadh wrote:

Dr. Sclafani: I have assembled below your replies concerning your proposed
treatment protocol when you are able to resume CCSVI procedures. It

seems that you are planning on performing an initial Doppler screening

yourself. Post-op, patients who had to fly-in will stay over a few days

to be sure there aren't any problems. A prophylactic dose of a

relatively safe short acting anticoagulant for three weeks will be

prescribed. No stents will be used.

Follow up visits by neurologists to assess conditions. Doppler ultra sound
testing performed according to Dr. Zamboni's criteria.

These last two are real stumbling blocks for me, at least. I live near
Chicago and I am not aware of any neurologist here who isn't opposed to

the CCSVI theory, so I doubt if follow-up observation is a real

possibility. The IR who did my first procedure did have a Doppler

ultrasound test done on me by his hospital, but they have since slapped

an IRB on him in March and it still hasn't been satisfied.

Does this mean someone cannot be treated by you until they already have a
local neurologist and ultrasound testing facility lined up for post-op

surveillance? Or does this mean that treated patients should plan on

flying back for these follow-ups?

Donnchadh

drsclafani wrote:

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.

drsclafani wrote:

Yes, it is important that a group of ultrasound facilities be accredited by
someone to assure that they do a standardized examination that is

reliable. Training is very important, otherwise abnormal findings will

be missed. There is not much concern for the ultrasound done prior to

treatment of ccsvi. In my practice, I would generally want to perform

that baseline examination myself, at least unless there were mitigating

circumstances. However as we will likely see insufficient centers in

each city for a while, it is important that those treating have access

to local neurologists and ultrasound labs to do the surveillance testing

necessary to stay on top of follow up. The on line survey of symptoms

can only go so far. We need more objective signs indicating possible

restenosis, etc.

I have spoken with Dr Z about this and we will develop a standard at the first isnvd meeting in
bologna in 2011. In the meantime, I will have to assure adquate long

distance followup for my own patients.

drsclafani wrote:

Some neurologists have "fired" their patient.

many patients do not routinely visit neurologists and have given up on
medications. thus i surely need colleagues who will cooperate. Many i

have spoken to have demured and walked away.

Other patients DO NOT want to share their treatment with their neurologist.
Some dislike or mistrust their neurologists or are dissatisfied with

their neurology care and would be interested in referral to an MS

specialist who is open minded regarding ccsvi

So therefore I needed some neurology colleagues close to me that I can refer patients to.

drsclafani wrote:

The decreases in oxygen saturation are slight The body is highly effective in extracting oxygen.

However, hypoxia is a factor increasing risk of thrombus formation and with
intimal damage could lead to thrombosis. I think that studying outcomes

of those who travel is an important point to collect. Good job!

I plan to anticoagulate all my patients with a prophylactic dose of a
relatively safe short acting anticoagulant for three weeks. Thus those

traveling home will have some protection. I was planning to restrict

patients from flying for a few days too.

I am not a student of geography but i am not averse to referring patients
to labs that are knowledgable perhaps outside of chicago but closer

than new york. If one does not exist, I am not going to abandon

patients. Which means either you visit me and my colleagues or I train

people to evaluate and image my patients. I plan to train someone in the

doppler techniques in chicago

BTW, you left out periodic patient self evaluations at one m onth, three months, six months, and every six months thereafter.

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newveins wrote:

I have spent the last week reading all of your replies doc, very informative thank you very much for your time.

I was interested in your suggestion to fogdwellers question as I have
have sore jugs too, but you took it off-line, is there a suggestion you

could put on-line, I would not know if I have restenosed since I had no

improvements to begin with even though both jugs and azygos were 80-90%

stenosed:

Dr. S. , I am looking for follow-up treatment to angioplasty I recieved September 27, 2010. It was
in So. Cal. and that is about 11 hours drive from my home.

I suspect restenosis. Original effects faded after about a week, and I am
now experiencing greater leg pain and recovery time after exercise is

much longer (3 days instead of 1/2 day.) I still hve sore and stiff neck

which may or may not be related. I am interested in following up.

My question: what do you suggest? Doppler? MRV? Venogram? If in order (e.g. MRV and only if it shows a problem, venogram.)?

Is it likely that the stiff neck is related? I had verly sore jugulars
after angioplasty; they wer stretched as mluch as they could.

drsclafani wrote:

I think surveillance is most practical with Duplex ultrasound with Bmode imaging and Doppler color imaging and hemodynamics.

angioplasty stretches both the vein and the adjacent muscles. This could be cause
pain, inflammation of the vein could also cause pain. Stents are likely

to cause pain

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Cece wrote:

In the early days last winter, it was a big question if the travel posed a risk post-procedure.

I've dug up research that shows that oxygen levels of people flying
commercially will drop to levels that might prompt a doctor to put an

oxygen mask on them if it were in a hospital setting. Presumably

post-procedure the patient's oxygen levels are healthier, so it would be

when traveling in that this would be an oxygen-deprivation event.

Travel itself is a big stress to the system of an MSer. That a patient last
summer passed away on the plane ride home could be a coincidence, as it

was attributed to the multiple blood thinners.

How difficult would it be when doing data collection to include a column
for whether the patient had traveled or not for the treatment? Then when

doing the data analysis it could be checked to see if the travel itself

had any detrimental effect on the outcome. This would be of immediate

use to people choosing between going local, traveling a little, or

traveling far.

( references: 1. http://tinyurl.com/25ao9z5 2. http://www.ncbi.nlm.nih.gov/pubmed/8239156 3. http://tinyurl.com/2foczp9 ) (note that these are oxygen saturation figures for the body at large, in an MSer the brain would have even less oxygen)

drsclafani wrote:

The decreases in oxygen saturation are slight The body is highly effective in extracting oxygen.

+++++++++++++++++++++++++++++++++++++

elliberato wrote:

Dr Sclafani, there is so much talk on here about the etiology and
pathology of veins and such. We are all desperate to do something and

CCSVI makes sense as well the procedure is so minimally invasive. What I

fail to see however is results?! There are lots of videos about people

who say they now have warm feet or can lift a toe or whatnot. I know

anything is better than nothing. My question is this. Does this thing

really work? Are pwms much better off with the procedure? Did you see

that while you treated? Are the patients you treated improving

clinically? Have you seen it in your travels and all the people you are

learning from? Do pwms really get better from this procedure or what?!

drsclafani wrote:

The jury is not yet in on how many patients are improved, which patients
are improved, what technique provides the best outcomes, how often

surveillance is needed and when to re-intervene.

It will take much time to answer those questions. At the moment, you must
make your decisions based upon the information at hand.

Also what constitues success is debatable. Someone whose symptoms are
worsening quickly might be satisfied with no worsening. Others want and

expect much more.

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tzootsi wrote:

Hi Dr. S,

I posted this question out on the boards, but I thought I'd also put it here for your thoughts:

It's pretty much a no-brainer that veggies like broccoli, kale, swiss chard,
and spinach are very good for you. In fact Dr. Wahl's ms regimen calls

for lots and lots of them in your diet since they benefit mitochondria.

However, these veggies are loaded with vitamin K, the blood clotting

vitamin. I wonder if eating them after stents were put in might not be a

good idea.?

drsclafani wrote:

Yes, dietary intake of foods high in vitamin K affects your ability to clot
and for some anticoagulants to work. Coumadin, also known as warfarin,

is a blood-thinning drug that works by inhibiting the use of Vitamin K

in the liver to make certain chemicals that are critical to forming

blood clot. Thus a lot of vegetables that increase your vitamin K intake

also affect the coumadin one uses to prevent clotting. The vegetables

you have listed above contain considerable vitamin K.

This is not to say that you should avoid these good foods.What is important
is that your intake of these foods be consistent so that the right dose

of coumadin can be taken.

There is no specific warfarin (Coumadin) diet. It is important to pay attention to what you eat while taking warfarin.

The key indicator of the effectiveness of coumadin as an anticoagulant is
the prothrombin time. If you eat lots of vitamin K containing foods, you

may require a higher dose of the coumadin. If you periodically eat lots

of these vegetables it might affect you more than if you consistently

have a certain amount and the dose of coumadin that is given might be

insufficient. So CONSISTENCY IN DIET is more important than avoiding

good foods.

Talk to your doctor before making any major changes in your diet and before starting any
over-the-counter medications, vitamins or herbal supplements because

they may contain vitamin K and this might require frequent Prothrombin

time tests until you reach a steady state. . If you are unable to eat

for several days or have ongoing stomach upset, diarrhea or fever,

consult your doctor. These signs and symptoms may mean you need a

different dose of warfarin.

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dania wrote:

I would just like point out a few facts. Yes, I did get blood clots in
the stent. I am prone to producing blood clots but that does not answer

why all 3 veins restenosed. There are many others that got blood clots

in their stent and some developed clots in the vein where there was no

stent. Some restenosed but never developed clots. The big question what

is causing the veins to restenose?

drsclafani wrote:

restensosis occurs because of intimal hyper plasia or overgrowth in the lining
layer of the vein, or because the elastic recoil of the vein is not

completely overcome or because the valves fused again

it seems that multiple treatments might be necessary. and that more aggressive dilatation could be valuable.

Surveillance after treatment is important

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