DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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drsclafani
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Re: American Access Care no longer treating CCSVI

Post by drsclafani » 7 years ago

cowboystew wrote:Dr. S,
Maybe you can shed some light on American Access Care and their decision to no longer offer treatment of CCSVI. I was scheduled for scans and treatment next week. I received a phone call this morning from AAC (a man named Frank Higgins) informing me that my insuraqnce is refusing to pay. On further investigation, a rep from my husband's job who deals with our insurance (Blue Cross/Blue Shield) found that American Access Care is no longer treating CCSVI on patients with MS. Is this accurate? I'm so dissapointed that I cannot be treated. ~Nancy
THIS IS ABSOLUTELY FALSE. I DO NOT WANT TO BE PARANOID BUT LAST WEEK SOMEONE STATED THAT I WAS NO LONGER DOING THE PROCEDURE.

if i dont do this procedure, i retire. and i am not ready for retirement. ask my patients.

What is happening is that blue cross blue shield has stated on april 11 that they consider ccsvi treatment an experimental procedure in patients with MS and will not longer pay for the procedure. So those patients with this insurance will be required to pay for the procedure. this is akin to the canadian government stating that it will not pay for ccsvi treatment, requiring canadians to pay out of pocket for procedures.

This is very frustrating. They quoted arguments that other papers (doepp, etc) have refuted zamboni's paper and that further research is needed to understand the truth of zamboni's work.

but it is not true that american access is no longer treating ccsvi. I am now booking 50% more cases than six months ago

unfortunately patients with bc/bs who want this procedure prior to the agreement of many research studies will have to pay for the procedure. sort of like PI has been doing for some time.

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Post by drsclafani » 7 years ago

LittleMissT wrote:Hello Dr. Sclafani,

You are awesome. First time poster and I'm looking for a little understanding.

My 6 month follow up doppler (Barrie,ON) concludes "an element of abnormal flow in the deep cerebral veins". The IJV's were normal weirdly as I am experiencing cognition issues, headaches, wrenching neck pain, periodic ringing in the ear, inflamed optic nerve overall body weakness, less coordination..etc.

Are the DCV's treatable?

Could the vertebral veins cause this abnormal flow? I ask because I've had 3 dopplers prior to the this and not once was there a mention of abnormal DCV flow.
the deep cerebral veins drain into the dural sinuses, that drain into the jugular veins. obstructions in the jugular veins leads to reversal of flow in any combination of internal jugular veins, vertebral veins and deep cerebral veins
it is curious to see dcv reflux alone, but i guess it happens.
I've also had an MRV of my head 1 month before my angioplasty Sept. 2010 and it was unremarkable mind you it wasn't interpreted by a ccsvi expert. I am concerned. I am symptomatic. I want round two and so any advise I'd be over the top grateful.
your ultrasound should be interpreted for any of the five criteria. the dcv is actually being dropped as a criteria by the consensus meeting we had in bologna in march 2011.

so you need to know whether you h ad more than the one criteria you mention. because one criteria positive is not abnormal.

Lastly, when I'm vertical I notice the neck/head pain cumulating (even bloodshot eyes) and I get relief in supine. Is there a reliable test that investigates whether or not its my neck muscles impeding the VV function when upright?
i do not think there are muscles that are impeding vertebral vein function when upright. perhaps it is a craniocervical osseous obstruction.
Okeee dokee,
Thanks for your patients and time and sorry if I've repeated a topic.

Little Miss T
let me repeat something i have said many times.

never apologize for asking a questions. Apologize to yourself for not asking

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Post by drsclafani » 7 years ago

1eye wrote:Dr. Sclafani:

I am gaining incredible respect for you by watching this present discussion. What seems to be happening I cannot even fathom.

I am eager to hear more. God speed.
thanks 1eye.

what i am trying to accomplish with this example is to show utilization of many of the concepts we have shared in one case. All the thoughts, questions, ideas, actions have led to refinements. Now i want to share.

the following pictures have shown that there was left internal jugular vein stenosis treated by angioplasty, there was left iliac stenosis treated by angioplasty and there was a funny looking aygous vein.

Image
Image
Image
Image
Image


We have learned that it is unlikely to develop ccsvi if only one of the three main draining veins (Lt IJV, Rt IJV, Azygous V) are obstructed.

we have one dead normal right ijv
we have one abnormal Lt IJV.
so the aygous takes on huge importance. all the more so true because there is obstruction of the left iliac vein and the blood draining through that vein is the blood of the lower extremity and the pelvis. That is a lot of blood. to use our highway analogy, the main road is blocked and another highway is closed so all the traffic is causing congestion of the main road.

We know that aygous vein disease is not easily recognized.

1. some just balloon angioplasty the entire vein
2. others do nothing,
3. others take a compliant balloon and inflate it along the length of the vein, looking for stenoses.
4. still others use IVUS :wink:

that said, lets look at the ivus. Most are not really familiar with it so lets see what we can see.


Image
The top two images are the IVUS, below are the same pictures with some color annotations.

the round images on the left are cross sectional views of the vein. Sound is emitted from the end of the catheter and reflects off tissues depending upon the tissue echogenicity.Bright signals are more echogenic, dark signals are fluild.

We can see in the top left that there is bright echogenic material in the middle of the vein. these could represent valves ,septums, and webs. In some patients it is quite clear that there are valves thare moving poorly. sometimes there is a band of tissue extending from one side of the vein to another.in other times we see the septum.

These tissues in the lumen take up space, cause resistance to flow and generally impede the venouse flow.

the images on the right show a longitudinal view. I find this better suited for looking at the reflections.

in this case on the right set of images that a septum divides the lumen of the vein in two. Thus only one half of the vein is used for flow. And for sure this cannot be seen on the venogram.

Why not? because the contrast media obscures or hides the thin tissue within the lumen. So for this stuff, venography is likely not the gold standard for viewing this material.

To end this first chapter in the story, a large balloon 18mm was used to dilate the arch of the azygous. flow appeared faster and less reflux was noted.
Image
Again the azygous venography was of limited diagnosic value. IVUS shown below clearly demonstrated a wider lumen without the septum.

Image

i hope you find this as interesting as i did. then again, i eat sleep and dream this stuff.

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Re: American Access Care no longer treating CCSVI

Post by cowboystew » 7 years ago

drsclafani wrote:
cowboystew wrote:Dr. S,
Maybe you can shed some light on American Access Care and their decision to no longer offer treatment of CCSVI. I was scheduled for scans and treatment next week. I received a phone call this morning from AAC (a man named Frank Higgins) informing me that my insuraqnce is refusing to pay. On further investigation, a rep from my husband's job who deals with our insurance (Blue Cross/Blue Shield) found that American Access Care is no longer treating CCSVI on patients with MS. Is this accurate? I'm so dissapointed that I cannot be treated. ~Nancy
THIS IS ABSOLUTELY FALSE. I DO NOT WANT TO BE PARANOID BUT LAST WEEK SOMEONE STATED THAT I WAS NO LONGER DOING THE PROCEDURE.

if i dont do this procedure, i retire. and i am not ready for retirement. ask my patients.

What is happening is that blue cross blue shield has stated on april 11 that they consider ccsvi treatment an experimental procedure in patients with MS and will not longer pay for the procedure. So those patients with this insurance will be required to pay for the procedure. this is akin to the canadian government stating that it will not pay for ccsvi treatment, requiring canadians to pay out of pocket for procedures.

This is very frustrating. They quoted arguments that other papers (doepp, etc) have refuted zamboni's paper and that further research is needed to understand the truth of zamboni's work.

but it is not true that american access is no longer treating ccsvi. I am now booking 50% more cases than six months ago

unfortunately patients with bc/bs who want this procedure prior to the agreement of many research studies will have to pay for the procedure. sort of like PI has been doing for some time.
Thank you so much for clarifying this. A very good friend has agreed to loan the money necessary to go forward with treatment. I feel very blessed. I hope that my appointment times are still open for me. I'll be calling Dr. Makris office first thing in the morning to make arrangements. My plan is to pay for the procedure up front and then bill BC/BS in order to have record of their refusal to cover my procedure in hopes that this will eventually be seen as discrimination of MS patients. I'm hoping for reimbursement, but I won't hold my breath.

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ada
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dr sclafani saids i eat sleep and dream with that!!!

Post by ada » 7 years ago

tank you dr for your great work you do.
you help us so much to realize what is happening in very simple words.
your new friend from greece
agni

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Post by NZer1 » 7 years ago

Thanks Dr for this lesson, so glad you have not retired and are working on this for us.
The learning available for other IR's is priceless.
Again Thanks,
Nigel

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Re: dr sclafani saids i eat sleep and dream with that!!!

Post by drsclafani » 7 years ago

ada wrote:tank you dr for your great work you do.
you help us so much to realize what is happening in very simple words.
your new friend from greece
agni
Agni
you underestimate your ability to understand what i say. i try to explain accurately what i write for you. I do not write simply. perhaps i am a good writer, but you are a great mind waiting to read.

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Post by bluesky63 » 7 years ago

Dear Dr. Sclafani: I think you are an amazing teacher. :-) I have been afraid to look at the images and discussions because I know I mix things up and I figured I didn't need more proof of how much I didn't understand, but this time I dared to follow along -- and it makes sense! :-)

I was someone who has a surprise improvement in hearing. I never expected it -- even on the table I realized I had a dramatic improvement in hearing; it was as though someone finally switched on my ear. Maybe the aural equivalent of the colors I have seen described. It was actually too much for me for a while till I got more used to it.

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Post by WeWillBeatMS » 7 years ago

bluesky63 wrote:Dear Dr. Sclafani: I think you are an amazing teacher. :-) I have been afraid to look at the images and discussions because I know I mix things up and I figured I didn't need more proof of how much I didn't understand, but this time I dared to follow along -- and it makes sense! :-)

I was someone who has a surprise improvement in hearing. I never expected it -- even on the table I realized I had a dramatic improvement in hearing; it was as though someone finally switched on my ear. Maybe the aural equivalent of the colors I have seen described. It was actually too much for me for a while till I got more used to it.
Wow! Congratulations bluesky.

Now no pressure Dr. Sclafani, but if my right ear should open up next week while you're roto-rooting my veins, I hope you have a box of kleenex nearby. :D

WeWillBeatMS

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drsclafani
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Post by drsclafani » 7 years ago

WeWillBeatMS wrote:
bluesky63 wrote:Dear Dr. Sclafani: I think you are an amazing teacher. :-) I have been afraid to look at the images and discussions because I know I mix things up and I figured I didn't need more proof of how much I didn't understand, but this time I dared to follow along -- and it makes sense! :-)

I was someone who has a surprise improvement in hearing. I never expected it -- even on the table I realized I had a dramatic improvement in hearing; it was as though someone finally switched on my ear. Maybe the aural equivalent of the colors I have seen described. It was actually too much for me for a while till I got more used to it.
Wow! Congratulations bluesky.

Now no pressure Dr. Sclafani, but if my right ear should open up next week while you're roto-rooting my veins, I hope you have a box of kleenex nearby. :D

WeWillBeatMS
if i improve the function of your nose, I will be amazed :D

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Post by Cece » 7 years ago

perhaps i am a good writer
Perhaps, indeed.
Not bad with the jokes, either. :)

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THEGREEKFROMTHED
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Re: American Access Care no longer treating CCSVI

Post by THEGREEKFROMTHED » 7 years ago

drsclafani wrote:
cowboystew wrote:Dr. S,
Maybe you can shed some light on American Access Care and their decision to no longer offer treatment of CCSVI. I was scheduled for scans and treatment next week. I received a phone call this morning from AAC (a man named Frank Higgins) informing me that my insuraqnce is refusing to pay. On further investigation, a rep from my husband's job who deals with our insurance (Blue Cross/Blue Shield) found that American Access Care is no longer treating CCSVI on patients with MS. Is this accurate? I'm so dissapointed that I cannot be treated. ~Nancy
THIS IS ABSOLUTELY FALSE. I DO NOT WANT TO BE PARANOID BUT LAST WEEK SOMEONE STATED THAT I WAS NO LONGER DOING THE PROCEDURE.

if i dont do this procedure, i retire. and i am not ready for retirement. ask my patients.

What is happening is that blue cross blue shield has stated on april 11 that they consider ccsvi treatment an experimental procedure in patients with MS and will not longer pay for the procedure. So those patients with this insurance will be required to pay for the procedure. this is akin to the canadian government stating that it will not pay for ccsvi treatment, requiring canadians to pay out of pocket for procedures.

This is very frustrating. They quoted arguments that other papers (doepp, etc) have refuted zamboni's paper and that further research is needed to understand the truth of zamboni's work.

but it is not true that american access is no longer treating ccsvi. I am now booking 50% more cases than six months ago

unfortunately patients with bc/bs who want this procedure prior to the agreement of many research studies will have to pay for the procedure. sort of like PI has been doing for some time.
People need to understand that BCBS is catastrophic coverage only. My personal deductible is 10,000 out of network and 5,000 in network in an attemp to keep it" affordable." Should you ever get racked up you will be thankful that you have it, but in terms of it covering the Liberation the insurance Gods are not on our side. Rumor has it that Dr Sclafani will gladly trade his services for 50O gabagool sandwiches served on crusty rye bread.

ALL BS aside, if you knew the Salvatore Sclafani I know, you would realize he is a stand up guy, moreso than many of you will ever come across in your life, his intentions are to treat and all this insurance stuff to him is a formality. He doesnt need to be bogged down by it.

www.thegreekfromdetroit.com

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Post by LittleMissT » 7 years ago

Hello Good Dr.,

Thank you for clarifying the term "element of of abnormal flow in the deep cerebral veins". I will research the revised criteria for CCSVI.

re: craniocervical osseous obstruction - You were right. I saw my Chiropractor today (first time post treatment) and he fixed me up. Surprising to me because just 6 days ago I had normal results on a neck xray!

Lastly, a compliment to you. I really adore that you're inspirational, funny and charming but more importantly you're a thorough, dedicated and open-minded Doctor and extraordinary teacher. Your commitment re: MS/CCSVI is appreciated.

Little Miss T

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drsclafani
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Re: American Access Care no longer treating CCSVI

Post by drsclafani » 7 years ago

THEGREEKFROMTHED wrote:Rumor has it that Dr Sclafani will gladly trade his services for 50O gabagool sandwiches served on crusty rye bread.

ALL BS aside, if you knew the Salvatore Sclafani I know, you would realize he is a stand up guy, moreso than many of you will ever come across in your life, his intentions are to treat and all this insurance stuff to him is a formality. He doesnt need to be bogged down by it.

www.thegreekfromdetroit.com
greek, 500 sandwiches sound great....now what about dinner?

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How do you treat it?

Post by Rosegirl » 7 years ago

Assuming that IVUS finds a flap, septum or other extraneous tissue in a vein, how do you treat it? Will inflation of a balloon break or otherwise disrupt the abnormality? And if that doesn't work, is there other way to solve the problem?

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