DrSclafani answers some questions

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

Re: neurologist support

Postby drsclafani » Sat May 29, 2010 6:36 am

msgator wrote:Hi Dr. Sclafani,

I am on your list and went to my neurologist today. He is very supportive of my having the procedure as long as I stay on the copaxone in the mean time. He has a lot of respect for the people in Buffalo and is pleased that there are opportunities closer to home (I am in CT) to have things checked out.

So my question is....what do you need from him as far as medical records/ reports???? He would like copies of reports, if possible, on all the tests/procedure you will do. He doesn't care to see the images, because he doesn't think he would be able to read/understand them.

I thought he would have that response, but after everything I have read I did get nervous.

Thanks again for everything you are doing. I am a faithful reader, if not contributor.

Ann


Ann
given the state of the art at the moment, i agree with your neurologist that you should stay on medications that he prescribing for you.

a synopsis of your condition from your doctor would be most welcome. Since most neurologists have been against this form of treatment, that would be a luxury.
Any images you have of your brain and spine are very helpful so we can see progressions and affected areas. If the last one is older than a six months, try to get one before you come or it will be done here.

I usually send a report back when the neurologist is interested and i send them a small powerpoint presentation of your condition rather than all the images, A few arrows and circles helps those unfamiliar with the imagery.

hope to meet you sooooon!
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Postby drsclafani » Sat May 29, 2010 6:49 am

MS_mama wrote:thank you for your reply on the anticoagulants Dr. S. You mentioned long-term effects of coumadin--does it still cause side effects even after it is discontinued? Are the injections you mentioned heparin? This is what Dr. Z mentioned in his Charing Cross paper so I was curious as to how others' protocols are.

If that is not part of the protocol at Dr. Siskin's practice and I request it, would it be adequate to follow up with a GP as regards the anticoagulants or with an IR/Vascular specialist?


most side effects of coumadin are the result of the treatment. Generally within a week or so, as the drug leaves your body, your risk of side effects goes down significantly.

Yes, i use a heparin like medication for 2-3 weeks. it has a higher safety profile than heparin

There is no definite proof one way or the other that anticoagulation is necessary (even though i use it.:wink: ) what you are saying is that dr siskin doesnt think that the risk is worth the benefit.

we are in a philosophical issue here. That is, does a patient have the right to change a doctor's plans, if that patient knew before that the doctors plans were not to their liking or belief.

Frankly, if a patient did not want to follow my treatment plan, I would prefer to refer the patient to someone who felt that the alternative was appropriate. It puts the physician in a hole, when his or her plan is disrupted only partially followed. Certainly you should be up front with the doctor before you are treated by him, not after.

ONe of my patients decided to stop coumadin on her own. i believe it might have caused her to thrombose her vein later on (i have no proof)

So if you want anticoagulation and dr siskin doesnt want to do it, perhaps you should find a doctor whose treatment plan is more in alignment with your ideas.
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Postby drsclafani » Sat May 29, 2010 7:02 am

sbr487 wrote:Hello Doc.,

Another question -

Do you think doctors who are doing study should also document the MS symptoms the patient presents with the type of defect they find? This data might be very valuable in future for diagnosis.


yes definitely
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Postby Cece » Sat May 29, 2010 8:22 am

drsclafani wrote:
HappyPoet wrote:
drsclafani wrote:1. accept protocol as written. Liberations can begin. Yeah!!! javascript:emoticon(':lol:')
2. Accept provisionally with specific wording changes. Liberations resume Yeah!!! javascript:emoticon(':D')
3. Request detailed changes. This would require revision of the application. The revision would be reviewed at the next meeting of the Group reviewing my application. Each group meets once monthly javascript:emoticon(':evil:')

Dr S, I see you found the emoticons ... your use of them is so funny!
.
edit: I typed my daughter's adjective of "cute" the first time instead of mine, sorry Dr. S.


i like being cute, funny is not so bad, hot is best


Will this be a problem for those of us with heat intolerance? ;)
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Postby jr5646 » Sat May 29, 2010 9:14 am

drsclafani wrote:I see collaterals but i dont see the cause
of course, you know my answer, its the catheter venogram and the azygous and careful looking for a web


Thanks Doc S. - Partly the reason I asked is because Dr. Dake at Stanford was finding (and treating) this elliptical (pancake / flattening) of the IJV's.

I'll just wait for the "gold standard" and stop this turmoil speculation... I gotta get this knot out of my stomach and stop worrying about it..

Quite frankly, I'm alittle fried (as I'm sure you are) simply reading, studying, obsessing, and trying to get treated.. As I've stated before, the stars really do have to align for us to get even a shot at some relief. However, we're in a much, much better position today than a year ago - as all we really had to look forward to was more drugs..

Thanks again for your help... I really appreciate it.
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Postby Trish317 » Sat May 29, 2010 9:41 am

drsclafani wrote:
MS_mama wrote:thank you for your reply on the anticoagulants Dr. S. You mentioned long-term effects of coumadin--does it still cause side effects even after it is discontinued? Are the injections you mentioned heparin? This is what Dr. Z mentioned in his Charing Cross paper so I was curious as to how others' protocols are.

If that is not part of the protocol at Dr. Siskin's practice and I request it, would it be adequate to follow up with a GP as regards the anticoagulants or with an IR/Vascular specialist?


most side effects of coumadin are the result of the treatment. Generally within a week or so, as the drug leaves your body, your risk of side effects goes down significantly.

Yes, i use a heparin like medication for 2-3 weeks. it has a higher safety profile than heparin

There is no definite proof one way or the other that anticoagulation is necessary (even though i use it.:wink: ) what you are saying is that dr siskin doesnt think that the risk is worth the benefit.

we are in a philosophical issue here. That is, does a patient have the right to change a doctor's plans, if that patient knew before that the doctors plans were not to their liking or belief.

Frankly, if a patient did not want to follow my treatment plan, I would prefer to refer the patient to someone who felt that the alternative was appropriate. It puts the physician in a hole, when his or her plan is disrupted only partially followed. Certainly you should be up front with the doctor before you are treated by him, not after.

ONe of my patients decided to stop coumadin on her own. i believe it might have caused her to thrombose her vein later on (i have no proof)

So if you want anticoagulation and dr siskin doesnt want to do it, perhaps you should find a doctor whose treatment plan is more in alignment with your ideas.


This is probably a difficult question to give a direct yes or no answer to but I'll pose it anyway. If a patient had been prescribed Coumadin, in the past, for a blood clot behind the knee, would that be an indication that it, or another anti-coagulant, should be prescribed post-CCSVI procedure?
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Postby LR1234 » Sat May 29, 2010 10:48 am

Factors Increasing Central Venous Pressure

Primarily a change in compliance (C) or volume (V)
Decreased cardiac output V
Increased blood volume V
Venous constriction C
Changing from standing to supine body posture V
Arterial dilation V
Forced expiration (e.g., Valsalva) C
Muscle contraction (abdominal and limb) V, C

Hi Dr Sclafani, I found this table on a website as I am still interested in the issue of blood flow.
Its been mentioned that MSers may not have enough blood flowing through the veins which could create the narrowing we see in some cases.
It seems that even if this narrowing is fixed that the blood still doesn't flow.
In my last question to you I asked if there was anything we could do to increase venous pressure to create more of a flow.

Now I am stuck with the idea that on one hand we are looking to decrease venous pressure but on the other hand we need to increase it for better blood flow.
(maybe once the valves and blockages are sorted maybe we need to increase pressure)

What are your thoughts on this? Could we do anything from the above list to see if they would improve symptoms. (Maybe pregnancy helps some MSers because the blood flow is increased not just because the immune system is supressed)
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Re: TODAY'S DISCOVERY

Postby drbart » Sat May 29, 2010 10:50 am

drsclafani wrote:Today I added a cutting ballloon to my amamentarium of tools for use in liberation. This balloon has some sharp edges of metal attached to the balloon. When the balloon is opened, the metal presses into the tissues. it creates a indentation. After creating the creasing of the vein or valve, I then went to my usual 14 millimeter high pressure balloon and the vein dilated so easily and smoothly. it was like buttah! and created a very large venous confluens.


a friend had his second angioplasty thursday. his stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.

first time, the balloon was inflated for 3 min. post-op, he felt significant improvement, for a few days, then back to square 0. now is a month later, and SFSG.

initial reports are that it wasn't quite like buttah, or even i-can't-believe-it's-not-buttah. they wound up using "the wire", which i gather is a pre-balloon thing that sounds even creepier than the cutting balloon animation i saw elsewhere.

<shortened url>

can you comment? are you still a CB fan?
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Re: A question from Spain

Postby jfgonmen » Sat May 29, 2010 11:00 am

drsclafani wrote:
jfgonmen wrote:Dear Dr. Sclafani.
My wife has MS for 20 years ago. She is 37 right now. She has SP MS two years ago and she is rapidly decline and worsering.

She was made some test to see if she has CCSVI ( Eco-doppler, flebography and scan ). We was told that she had asimmetrical yugulars. The left yugular has 12 milimiter and the rigth has 5.5 milimiter.
The doctor was surprise because it happen along the both yugular since top or beggining in cranial hole till the end of the neck. Even with the yugular cranial holes happens the same, the right cranial hole has a size that is less than a half than left one size.

My questions are:

Has it something to do with CCSVI?

sounds like it to me. Narrowing of the jugulars occurs because there is little blood flow through the vein. This is one of the important observations in ccsvi.
Would it have any influency in MS?
Could it be treated some way?


The treatment of CCSVI often improves the patient's condition. This is done by stretching the vein with a balloon. Thank you for your question.

And your english writing is pretty good!


Thank you very much for your answer Dr. You're very kind.

But I would like to ask you, How can the yugular cranial hole that has little size be stretching ?

When the blood flow from internal venus to the neck ( yugular ) always will find the little yugular cranial hole that don't allow the rigth external flow. How can it be solved?

Thanks again.
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Postby Cece » Sat May 29, 2010 12:16 pm

LR1234 wrote:It seems that even if this narrowing is fixed that the blood still doesn't flow.

My understanding is that, once it's fixed, the blood is flowing...lots of people here have reported this...?

For those for whom it isn't, then: perhaps a membrane or azygous valve were missed, because they are trickier?

And if still there is low blood pressure: maybe exercise, to strengthen the pump?

But I am no doctor!
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Re: TODAY'S DISCOVERY

Postby Cece » Sat May 29, 2010 12:33 pm

drbart wrote:a friend had his second angioplasty thursday. his stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.

CUREious and I were just talking/posting about this here late last night...those stenoses that are high up need to be looked at with IVUS to see if they expand under valsalva conditions (thus making them not a true stenosis and no need to treat) or if they stay tight under valsalva condition, making them necessary to treat.

As I understand it, a malformed valve down by the juncture of the jugular and subclavian veins (?) can cause reflux to go up a bit and then out through a network of collaterals, causing the higher-up area to narrow alarmingly due to the low blood pressure and low inflow caused by the low outflow caused by the lower down malformed valve. If this is what was happening in your friend's case, it was not the cutting balloon that was in error, but the location where it was being used. Lower down valves & membranes can get missed when the catheter lifts them out of the way when the venogram is being performed; I think this is sometimes suspicious/suspected when flow issues show up on a Doppler Ultrasound but not on the venogram itself.

We need to get Dr. Sclafani off the sideline and performing liberations, particularly on me :), so that he can publish this, so that there is a paper to refer to when this question comes up, so that all doctors can do this in a standardized best-way, which still needs to be learnt, so that every MSer in the world (not just the "white world") can be treated in a gold-standard fashion. Deep breath.
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Re: TODAY'S DISCOVERY

Postby drbart » Sat May 29, 2010 2:41 pm

Cece wrote:
drbart wrote:a friend had his second angioplasty thursday. his stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.

As I understand it, a malformed valve down by the juncture of the jugular and subclavian veins (?) can cause reflux to go up a bit and then out through a network of collaterals, causing the higher-up area to narrow alarmingly due to the low blood pressure and low inflow caused by the low outflow caused by the lower down malformed valve. If this is what was happening in your friend's case, it was not the cutting balloon that was in error, but the location where it was being used. Lower down valves & membranes can get missed when the catheter lifts them out of the way when the venogram is being performed;


i think this is not his case. sorry, i can't relate the specifics of where it is/was. i've seen his MRV but can't speak anatomy.

it seemed pretty definitely a pinch, with a bulge above. after it was opened, the collaterals reduced in size dramatically and flow resumed down its intended path.
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Re: A question from Spain

Postby Zeureka » Sat May 29, 2010 3:23 pm

drsclafani wrote: Narrowing of the jugulars occurs because there is little blood flow through the vein. This is one of the important observations in ccsvi

Understand right from this that an overall narrower jugular is not necessarily congenital then, but that for example a pathologic valve causing blood flow blockage can cause the narrowing of the jugular with time?

If the pathologic valve blockage is removed by balloon angioplasty will the jugular then again increase with time in diameter?
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Re: TODAY'S DISCOVERY

Postby Cece » Sat May 29, 2010 4:51 pm

drbart wrote:it seemed pretty definitely a pinch, with a bulge above. after it was opened, the collaterals reduced in size dramatically and flow resumed down its intended path.

Yes, I think what I was describing would've looked like more of a general narrowing, not a pinch like you describe...can't say I really know! It sounds like it was a rough day for him and then the improvements did not last? I am sorry to hear that.
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Re: TODAY'S DISCOVERY

Postby drbart » Sat May 29, 2010 5:32 pm

Cece wrote:
drbart wrote:it seemed pretty definitely a pinch, with a bulge above. after it was opened, the collaterals reduced in size dramatically and flow resumed down its intended path.

Yes, I think what I was describing would've looked like more of a general narrowing, not a pinch like you describe...can't say I really know! It sounds like it was a rough day for him and then the improvements did not last? I am sorry to hear that.


that was the first time. awaiting news of how this one turns out.
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