DrSclafani answers some questions

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

Postby drsclafani » Fri May 28, 2010 3:44 am

costumenastional wrote:
drsclafani wrote:Paolo zamboni Paolo zamboni 05/23/10 4:39 AM >>>
Sal,

I prefer to answer on scientific journals. The real battle is there.


With all my respect for Paolo Zamboni, i think that there is a real battle here also.
Sclafani's work here is very, VERY important to say the least, as well as the patients efforts who are pushing hard in order for CCSVI to be researched.


I was worried about posting dr Z's words, fearful of him being misconstrued. My fear is realized.

Dr. Zamboni was writing that he did not want to argue with the hungarian neurosonographer on line, but rather in the medical literature. I was asking him to help me answer a question and he did it willingly and transparently.

I appreciate your defense of my writing here and of your own advocacy. But the REAL battle is in the angio suite because ultimately it is not the neuros, or big pharma or governments that are the enemy, it is your own body, that beautiful, magnificent machine that has unfortunately backfired, that is the war zone.
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Postby drsclafani » Fri May 28, 2010 3:52 am

Zeureka wrote:Dr Sclafani, yesterday had percutaneous balloon angioplasty performed on my left and right jugular veins (in Katowice). The balloon catheter used in my case was Invatec 12x40 mm in both veins.

I was told they found that in particular my left jugular was narrower than usual, and that therefore they used a smaller balloon in my case. In fact I afterwards also checked with my room-mates and their reports all say that a 12x50 mm Invatec used in both their jugulars. I however do not understand how the length 40 versus 50 mm plays a difference - and for what reason - and not the width?


The larger the balloon volume the lower the pressure generated. That might explain it.

They said a stent was not necessary and that even if would have been so, stents for my size of left jugular would not currently be in their possession - if I understood that one correct from the English I understood? Would this make sense?

So my narrower jugular, is this a common/or rather uncommon issue and is this something you already came across? And different balloon catheter sizes chosen on what basis?


Yes. you must have a stent that has at least 20-30% larger diameter than the vein you place it in because veins can dilate greatly with greater flow. Otherwise there is a risk of migration.

also Narrowing of veins is rarely symmetrical
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Postby drsclafani » Fri May 28, 2010 3:53 am

Cece wrote:
drsclafani wrote:i wanted a night off, but someone sent me a private message and i was searching for his/her reference. I have been doing this almost every night for almost 2 1/2 months. A labor of love, but i needed some time away.....but how can i ignore some of the questions


What you are doing here is unusual (no other doctors here) and valued.

(edited out: presumptious advice on setting boundaries!) :)


thanks mom
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Postby drsclafani » Fri May 28, 2010 3:54 am

L wrote:
Cece wrote:What you are doing here is unusual (no other doctors here) and valued.


It certainly is both unusual and valued.


thanks dad
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Postby costumenastional » Fri May 28, 2010 3:55 am

drsclafani wrote:I was worried about posting dr Z's words, fearful of him being misconstrued. My fear is realized.


No worries doctor. All good here :)
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Postby drsclafani » Fri May 28, 2010 4:01 am

prairie wrote:Dr. Sclafani,

By all means take time off ! Thank you for the reply; common terms of discussion would be great. I have one followup; you wrote at the very end: "...suspect that those images have a duplication on each side" -- were you referring to the MR images (which are the same except for the viewing mode) or the doppler image? And what do you mean by a duplication.


i am talking about a duplication of the jugular vein, ie. two tubes going up the neck. one ends blindly, the other continues to the head. I am not speaking about the images you posted but what is on the images.

Your conversation with all of us is, I think, unprecedented. I'm not sure that if I totaled all the hours I've met with my GP over the years it would equal the time you've spent online here.


I will credit

my dad, an old time GP, who would speak for long periods with his elderly italian immigrant patients while i peeked through the keyhole of his consult room

my wife, a Kohutian pyschotherapist, who works in empathic immersion

and you patients who so deserve someone who listens
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Postby BooBear » Fri May 28, 2010 4:06 am

Dr. Sclafani, thank you once again for your patience and dedication to us. We all appreciate it!

When do you think you can commence the Liberation treatment again?
Three veins angioplastied.  One renewed life.  
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Postby sbr487 » Fri May 28, 2010 4:07 am

Hello Doc.,

A very basic question ...

Do you think it is possible (or come across such a case) where dilating a vein might not help. And the vein narrowing itself is resultant of lack of blood flow.

A related question - MRV will show presence of narrowing but will say nothing about blood flow. Doppler on the other hand relies solely blood flow.
In your opinion, would be prudent to treat a vein narrowing that shows up in MRV but Doppler looks normal.
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Re: Dr. Sclafani

Postby drsclafani » Fri May 28, 2010 4:14 am

pollywogsis wrote:Dr. Sclafani or anyone else,

Can anyone please tell me what you can see on the Doppler test and what you can see on the MRV?
Can the Liberation Surgery be done without a Doppler and only a MRV with the same results?
Is MRV the same as venography?

Which one tests for blockages in the neck?
Which one tests for blockages in the chest?
Which one tests for blockages in the abdomen?

I would really appreciate this information.
Thank you


pollywogsis: you should read your way through the entire thread. you are obviously catching up to a lot of folks here. There is a lot of interesting stuff there. But hurry, the test is not too far away!
Not that i am trying to inhibit your questioning.

on Doppler and ECU, one sees hemodynamic evidence of abnormal flow and anatomical abnormalities of the jugular vein

on MRvenography one sees evidence of collapse of veins, collaterals and some real stenoses

MRvenography is NOT the same as what most would call venography or, to be a purist, i would call catheter venography

catheter venography is the Gold Standard, but i would argue that all have their value as does

intravascular ultrasound (IVUS)

you all know I am going to try to prove that catheter venography plus IVUS should be the gold standard.

Neither ultrasound nor MRvenography is particularly helpful in assessing the azygous vein which drains the spinal cord. Only catheter venography and IVUS illustrate problems with that vein at the current state of the art.
Last edited by drsclafani on Sun May 30, 2010 6:40 am, edited 1 time in total.
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Postby drsclafani » Fri May 28, 2010 4:34 am

BooBear wrote:Dr. Sclafani, thank you once again for your patience and dedication to us. We all appreciate it!

When do you think you can commence the Liberation treatment again?
f

IRBs are very intersting organizations. They have to do a lot of work for which they do not get paid. They read a lot of nonsense. They have to wade through poorly written, inadequately thought out projects to guarantee that patients are not put in harms way, for projects that dont have value, or arent well thought out while assuring the patient confidentiality is not jeopardized.

So we have to to give them slack.

now to the skinny:

My proposal has been reviewed externally by a variety of people to "pre-position it" toward a favorable decision by the IRB. However there are no guarantees that the IRB will accept it, like it, want wholesale changes or minimal modifications.

The IRB has formal discussion and decision on the project on June 9.

they have several options

1. accept protocol as written. Liberations can begin. Yeah!!! :lol:
2. Accept provisionally with specific wording changes. Liberations resume Yeah!!! :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 :evil:
4. outright rejection (i do not think this is a possiblity.
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Postby drsclafani » Fri May 28, 2010 4:47 am

sbr487 wrote:Hello Doc.,

A very basic question ...

Do you think it is possible (or come across such a case) where dilating a vein might not help. And the vein narrowing itself is resultant of lack of blood flow.


absolutely. some of the narrowings result from diminished blood flow caused by other real obstructions. If one does not get the right one, the effect is minimal.

A related question - MRV will show presence of narrowing but will say nothing about blood flow. Doppler on the other hand relies solely blood flow.
In your opinion, would be prudent to treat a vein narrowing that shows up in MRV but Doppler looks normal.


one has to be careful about that. None of these tests are foolproof. I would base my decisions on treatment on the findings on IVUS and catheter venography. I would not rely upon ultrasound or MRvenogram
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Postby HappyPoet » Fri May 28, 2010 5:56 am

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.
Last edited by HappyPoet on Fri May 28, 2010 6:14 am, edited 1 time in total.
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Postby jr5646 » Fri May 28, 2010 6:02 am

Dr. S., I hope I'm not the one in class "constantly" waving his hand/arm with a question.. lol

Anyway, can you take a look below?? Dying to see what you think..

Thanks again for helping us all..

jr5646 wrote:Dr. Sclafani,

I just had an MRV done at Buffalo (BNAC-selfpay option) and wanted to see if you think this image shows treatable stenosis/narrowing? Is this something common you've seen? Is this area too high to be reached? Below is a direct quote from the report which I can't really make heads or tails of.. Also, I only presented with one of the five Zamboni criteria via doppler.. #2 - Reflux propagted upward to the Deep Cranial Veins (DCV's) and/or from the White Matter (WM) to the Subcortical Gray Matter (SCGM). Perhaps a bunch of clollateral veins too? Possible lower right IJV valve issue (sticky valve?) and Iron measures very high (higher than the avg. MS Pt.)

From the report: "MR VENOGRAM FINDINGS: The superior sagittal sinus with appears to drain predomininatly on the right. The transverse sinuses are relavetly symmetric in size. The sigmoid sinuses and jugular bulbs are relatively symmetric in size. At the base of the brain, the internal jugular veins are well visualized. At the level of the cranical/cervical junction junction on the right, the internal jugular on the right takes on a flattened morphology with respect to flow charactists. This segment is small in size being less than 10mm. Throughout the neck, the internal jugular veins have an ellipsoid morphology. The junction of the internal jugular veins with the subclavian veins is normal in apperance. There is slight asymmetry of the internal juglar veins with the right being larger than the left."

I'm not quite sure if or how this correlates, but my very first two presenting symptoms showed up on the left side. Left arm/hand numbness (still have it approx. 10 yrs later and left eye Optic Neuritis 2002 - complete, but temporary blindness that resolved in about 3 mths with steroids..

Anyway, the rest of the report comments on the arterial side.. all good :)

Image

Thanks again for all your help.. I decided on investing the $4500 to hopefully get some answers and further research, but would really rather give it to someone who needs it more than I do instead..
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Postby Donnchadh » Fri May 28, 2010 6:06 am

Dr. Sclafani:

Assuming that stents are implanted in the internal jugular veins, and a long term anti-coagulation regime is followed, would it ever be possible for the patient to donate a pint of whole blood?

The reason I am asking is that donating whole blood has been the best method for me in dealing with the MS effects of iron deposition.

I am not talking about donating while taking Plavik etc., during the immediate (30 days or so) recovery time, but later when presumably the inner vessel cells have completely covered the stent matrix.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby Cece » Fri May 28, 2010 6:55 am

Donnchadh wrote:Assuming that stents are implanted in the internal jugular veins, and a long term anti-coagulation regime is followed, would it ever be possible for the patient to donate a pint of whole blood?


You may donate blood while taking nonnarcotic pain relievers. Aspirin interferes with platelet function and should be discontinued prior to platelet donation as follows:

Aspirin: You cannot donate platelets if you have taken aspirin in the last 48 hours.

http://www.cc.nih.gov/blooddonor/can_i_donate.html

You should be able to donate blood as soon as you're off the anticoagulant (anywhere from 2 - 6 months? not sure) and are doing the lifelong low-dose aspirin. Only restriction on that is if you are trying to donate platelets. Hope to help.
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