DrSclafani answers some questions

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

Postby Cece » Thu Jul 22, 2010 1:32 pm

Thought I was in a different thread!
Last edited by Cece on Thu Jul 22, 2010 6:03 pm, edited 1 time in total.
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Postby joana123 » Thu Jul 22, 2010 2:25 pm

Good day everyone,

Please can you answer. How do you solve CCSVI if arteries supports the jugular vein? I have baloon angioplastic, it was not successfully i was a restenosis. I'm desperate.

Thanks, A.
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Postby CCSVIhusband » Thu Jul 22, 2010 3:45 pm

Cece, you may want to let everyone know the girl whose insurance denied her MRV approved it today after the doctor discussed it with the insurance company.

Don't want to cause anyone unnecessary concern at this point ...

Our insurance covered the testing and procedure 100% (didn't even have to pay a co-pay). It's also covering follow-up ...
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Postby Cece » Thu Jul 22, 2010 5:31 pm

CCSVIhusband wrote:Cece, you may want to let everyone know the girl whose insurance denied her MRV approved it today after the doctor discussed it with the insurance company.

Yes, nancymno posted about it one page back. Very good news.
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Postby nicknewf » Thu Jul 22, 2010 8:25 pm

I tried to register for the symposium today by email, but didn't hear back. Did it fill up?
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Postby girlgeek33 » Thu Jul 22, 2010 8:37 pm

nicknewf wrote:I tried to register for the symposium today by email, but didn't hear back. Did it fill up?


I did not get an immediate response, but I was registered last week. Give it a day...
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Postby drsclafani » Thu Jul 22, 2010 10:24 pm

girlgeek33 wrote:How to do a follow up exam of the azygous veins? If I understand correctly, it is very difficult to get a good view of these veins until catheter venography. How do you think this will be monitored in follow up visits? Base it on symptomology?

Thankfully, Dr. Bonn has a great follow up plan. I'm currently in waiting room for my 3 month follow up exam. :)


That is a good question.

Whatis the followup for?

1. assess current status
2. determine what improvements and deteriorations have occured since last visit
3. provide new information to the patient since last visit
4. Provide opportunity for patient to report and to ask questions
5. Make plan for testing
6.Assess drug regimens
7. Assess compliance with treatment plans
8. Plan for actions and modifications prior to the next visit




But you ask about the azygous vein assessment. As I have stated before, i think that visualization of the azygous vein is difficult without angiography. However it is unrealistic, impractical, expensive and time consuming to repeat angiography on every patient in followup. I think there needs to be a good rationale for performing a catheter based treatment in the absence of symptoms. However we need to detect restenosis before thrombosis.

It seems to me that the most practical test to evaluate CCSVI after treatment, is the screening test that should have gotten patients to the angio table in the first place.

Doppler ultrasound using Zamboni technique should tell us whether there is deterioration of venous function.

Angiography should be considered good followup care when
1. patient status deteriorates significantly
2. Doppler shows CCSVI worsening.

Nothing written in stone....just my opinions
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Postby drsclafani » Thu Jul 22, 2010 10:33 pm

nicknewf wrote:Dr. Sclafani,

Are the following facts and logic sound?

1. Existing data suggests that there is a correlation of between 50% and 90% between CCSVI and MS.
2. An indication of 50% likelihood of a vascular condition, such as CCSVI, is sufficient to justify an exploratory venogram to determine whether there is CCSVI, as well as the location and extent of vascular disorder.
3. If CCSVI is diagnosed by means of a venogram, the safest and best course of action is continuing the procedure to perform a balloon venoplasty on affected areas with patient informed consent to avoid the unnecessary risk and complication of a second procedure.
4. There is sufficient evidence to suggest that treating venous insufficiency, including CCSVI, provides a benefit to patients without undo risk.
5. There is nothing to suggest that the risk of treating venous insufficiency is any different for pwMS then the populations on which venograms and venoplasty is currently performed
6. Therefore, there is no reasonable basis on which to deny pwMS access to testing and treatment (if indicated) for CCSVI or on which to prevent qualified physicians from providing testing and treatment for CCSVI to pwMS.


Thoughts? Errors? Ommissions?


This is what i believe, but not everyone believes. The big contentiuon ins in #4: TThere is sufficient evidence to suggest that treating venous insufficiency, including CCSVI, provides a benefit to patients without undo risk.

Not everyone believes that there is sufficient evidence. There is only one scientific paper that agrees with #4 and it has not been revalidated or proven in a registry or a randomized prespective trial.
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Re: PFFT

Postby drsclafani » Thu Jul 22, 2010 10:41 pm

LadyGazelle wrote:I got to a DEAD END with testing. The MRV with contrast dye was canceled - because they don't know what they're looking for. I want a CD of the MRV without the contrast but they said they can't read it, so it's incomplete. The other thing I learned is they don't have the Sieman's machine for the MRV.

Then I called the doppler guy and asked why I didn't get a transcranial doppler and he said the Rx called for a doppler only. And I would need a new Rx that says exactly what they need to look for and then go to the neurology department of the hospital because they have the correct machine. Also he told me to find someone who would be willing to learn what I'm looking for and also ask if they could recommend a neurologist to help me. I had told him my neuro doesn't know I'm doing this because I know he wouldn't go along with it. Besides, it is a VASCULAR issue WITH MS and my PCD is concerned.

Also, the MRV doctor (who talked with my PCP initially) suggested that I go to Albany because they are more familiar with what I'm doing. Buffalo was another option the girl who is working with him mentioned - but I don't want some placebo treatment for their study!

PFFT I'll wait until next week and get the Rx for a transcranial doppler. But this time I will tell my PCP exactly what I'm looking for - and thank your Dr. S for that information. When I mentioned CSA, the technician didn't know what that was. So he couldn't comment on what his doppler showed. All I have is possible inverted valves in both jugulars with reflux. THAT'S TWO CRITERIA! Because he doesn't know about CSA - he can't compute for the negative number but he told me at the time that there isn't much difference with me laying down or sitting up. Could be THREE criteria.


TO BUMP THIS UP I'M INCLUDING IT HERE:

1. Transverse doppler of the IJV in J1, J2 and J3 during inspiration in the supine and sitting positions. Measure color and waveform at each site in both positions. Look for reflux and looking for no flow.
2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform
3. B-mode ultrasound to look for abnormal valves, septae, webs
4. Transcranial color doppler and waveforms to look at the deep cerebral veins for reflux
5. Measure cross sectional area of jugular vein in the spot where it is largest in supine and measure same cross sectional area in the same location while sitting up. Subtract sitting csa from supine CSA.

DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC

If I get the CD, then I'm going to find out who could review it and do the procedure, but as we have been told - we want someone experienced. How do we know that? Get in line!

LadyGazelle - (Leaping through hoops on fire!)
.


Very sorry for your troubles. At least you didnt get a catheter venogram interpreted as a normal right jugular, a thrombosed left jugular when it was actually stenosis of the right jugular and the catheter was in the vertebral vein NOT the jugular
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Re: exact wording of doppler report

Postby drsclafani » Thu Jul 22, 2010 10:43 pm

selkie wrote:
Cece wrote:fogdweller, this was from a few days ago:
drsclafani wrote:please tell your IR that i have written a primer in ENDOVASCULAR TODAY. It should come out next month.


This is very good to know. I asked my neuro a few days ago for a referral to our hospital's IR and he said NO!

That means I'd have to pay myself unless I can get my PCP to do it for jugular pain (which I have) and chest pain (which I have).

If not, I'd like to write our local IR and ask him to read Dr. Sclafani's article in Endovascular Today. Hopefully more and more IRs will be inspired to seek training for the testing, or to do the tests.


Late enrollment for the symposium is picking up. Its a big room so more are welcome (until Holly says STOP)
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Postby drsclafani » Thu Jul 22, 2010 10:50 pm

LadyGazelle wrote:I called Albany Medical Center and left my name and phone number on the "CCSVI voice mail" line. Then I called again and talked to someone LIVE... who said they only use MRV to diagnose. If I had a TCD done in Rochester, it wouldn't be of any use to them. She said they only use balloons and don't do anything in the head.

Do I need stents for inverted valves in both jugulars? Stents would hold them open all the time. That doesn't sound good either.

PLEASE - Help me understand.

LadyGazelle


LG
this is such a quilt right now, as i said, there is no standard because there are no accepted criteria except zamboni's. Unfortunately
1. people dont understand
2. docs feel comfortable using mrv instead of US
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Postby drsclafani » Thu Jul 22, 2010 10:54 pm

joana123 wrote:Good day everyone,

Please can you answer. How do you solve CCSVI if arteries supports the jugular vein? I have baloon angioplastic, it was not successfully i was a restenosis. I'm desperate.

Thanks, A.


joana123
so sorry for restenosis.

please understand that this is not a one time treatment.

however could you try to restate your questions. I could not undeerstand what you were asking
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Postby joana123 » Fri Jul 23, 2010 12:28 am

I'm sorry for my bad english.
The doctor said that the situation - specific reason because the artery pushing jugular vein.
Can you tell me is installation stent in my case is posible?

Thank you,
whit respect,
A.
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Postby Cece » Fri Jul 23, 2010 10:03 am

joana123 wrote:I'm sorry for my bad english.
The doctor said that the situation - specific reason because the artery pushing jugular vein.
Can you tell me is installation stent in my case is posible?

Thank you,
whit respect,
A.

If this helps, he discussed the situation when the carotid artery presses on the jugular in this thread:
http://www.thisisms.com/ftopic-12500-da ... sc-60.html

drsclafani wrote:
Cece wrote:My guess is that a stent would be the solution. The blood flows through the carotid artery at high pressure, I do not think the 'stent next door' would be a problem for it, unless there is something entrapping the carotid on the other side.


I call things like the carotid impression...."leave me alone lesions".

stent is not what i want to put there.

my concerns are severalfold
1. stenting a physiological narrowing may be a problem when that narrowing distends by treatment of lower more likely stenoses. it is possible that the stent will no longer be pressed against the wall of the vein and thus migrate toward the heart.
2. stents have the risks of in-stent stenosis leading to loss of the vein completely...certainly do not want to put one there for a physiological distensible narrowing
3. putting pressure on the wall of the carotid at the carotid bulb by stenting the vein may result in physiological responses including a slow heart rate
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Postby drsclafani » Fri Jul 23, 2010 12:54 pm

joana123 wrote:I'm sorry for my bad english.
The doctor said that the situation - specific reason because the artery pushing jugular vein.
Can you tell me is installation stent in my case is posible?

Thank you,
whit respect,
A.


my english is often not too good too

your doctor is saying you are having the artery press on the vein. This is not abnormal. But it suggests that you have a block lower down in the vein.
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