This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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

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.

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?

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!)
.

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.

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

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.

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.

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

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.