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I just got the preliminary report from Dr. Jacobs at CCSVI-Atlanta, formal report will be coming in a day or two. It seems my right jugular vein is wrapped around my carotid artery at the point that I had neck surgery in 1988. That's what is restricting flow. I have know since diagnoses that it had something to do with the surgery 22 years ago.

I highly recommend CCSVI-Atalnta. The tech, Lanie, was very thorough.

WOW. That is incredible news. Now I take it the surgery came before the MS if I remember? Unreal.

Does they have any idea on how to counter the "wraparound"?

Mark.

yes, the surgery(1988) was 5 years before my first neurological episode (1993). MY dx was in 2008, SPMS.

If the formal report concurs, it seems balloon and stents aren't appropriate, it's surgery.

I think this shows that being diagnosed with MS could mean a whole lot of different things. I advocate getting the imaging done first, then figuring out what to do next. GPs certainly can't argue with giving a prescription for imaging. If the imaging shows blockage for whatever reason, insurance surely can't deny fixing it. Just leave the words MS totally out of the conversation.

At this point I have MS-like symptoms, but I don't have MS.

CaptBoo,

First I am so sorry for this, for you.
If I may? ..have you had an mri? ..do you have lesions?

Thank you

My husband has just received his prescription for a Doppler exam. Now we need to find the person to do it. As you say its the first step to finding out if there is a possibility of CCSVI.
Ian's MS was diagnosed after he lost vision in his left eye following three weeks work which involved having his neck scrunched up and head tipped back. At the time no neurological problems but MRI showed some lesions. Over the years lesions have stayed stable but neurological symptoms have developed. CCSVI answers a lot of the questions that we have and neurologists have been unable to answer.
I initially thought we would go abroad for the treatment and started raising funds through "my" take on living with MS (if you want to read it you can find it at www.dandia.net) then found out Ian could have the procedure closer to home and the cost would obviously be greatly reduced. (Ian only has medical cover for his MS, CCSVI is not covered) We had hoped that he was going to be treated in October in Paris but unfortunately that has been postponed as the Dr doing the procedure has to wait now for official approval. However we remain very optimistic and like yourself will not be mentioning the MS or SEP word to anyone involved in the testing procedure. Hopefully Ian will be found to have a blood flow problem with Ms-like symptoms.
Exciting times ahead for us all. We just need to hang on in there
Good luck
Debbie

PCakes

I've had two MRIs that both a showed significant number of lesions both brain and spinal with Dawson's fingers. The lumbar puncture had O-bands, so clinically I have all the signs of MS.

Symptoms are loss of balance, left leg spasticity, fatigue and heat intolerance. Definite symptoms of MS.

And please don't feel sorry for me for this. I consider this great news. There is a solution. At least from further progression, we'll see what has already to far gone for recovery.

CaptBoo wrote:PCakes

I've had two MRIs that both a showed significant number of lesions both brain and spinal with Dawson's fingers. The lumbar puncture had O-bands, so clinically I have all the signs of MS.

Symptoms are loss of balance, left leg spasticity, fatigue and heat intolerance. Definite symptoms of MS.

And please don't feel sorry for me for this. I consider this great news. There is a solution. At least from further progression, we'll see what has already to far gone for recovery.

Hi again,
Thank you for the info. From a very uneducated seat in the stands. This to me, seems irrefutable evidence!!

I am sad for the surgical error. I celebrate your diagnosis

CaptBoo,

Would you kindly update us as and when you have anything to report?

Wishing you the very best,

Drury

Thanks for the thoughts. I have made an appointment with a vascular surgeon for consultation September 13. If he thinks he can help, surgery will follow within a few days. But of course that's big "if".

I got the CD of the Doppler images. I don't know what I'm looking at, but man, the differences between my right and left side is HUGE.

I'll post again next week when I know something.

Congrats on having an answer to what's going on in your neck! Please keep us updated, I am hoping they've got that surgical answer for you, this is different than the average case we hear about here.

CaptBoo wrote:Thanks for the thoughts. I have made an appointment with a vascular surgeon for consultation September 13. If he thinks he can help, surgery will follow within a few days. But of course that's big "if".

I got the CD of the Doppler images. I don't know what I'm looking at, but man, the differences between my right and left side is HUGE.

I'll post again next week when I know something.

These dopplers are fun to look at, since instead of a 2d image, they provide some real time info for flow, vs a straight imaging of the architecture which cannot possibly tell the whole story. Properly conducted UT's by experience professionals schooled in the proper techniques for CCSVI is the Holy Grail of the CCSVI testing world, if one considers non-invasive and fast testing of utmost importance.

It is normal to have a sinus type rhythm above and below the line. As the flow goes below the line, that is blood flowing down the jugulars and into the heart. As the heart pumps, some flow will go back up the jugulars for a very short time, at which time the valve shuts and prevents retrograde flow. (I speak from my very basic understanding here). This should produce a nice sinus rhythm on the graph, both up and down. If it is not, then that is indicative of obstruction. I recall Manoj's scan over in India, they insisted it was perfectly normal and later on he was found to have severe stenosis on both sides. These were people who had little to no experience testing for that particular problem.

You can see his MRV scan video I put together back then, I included a shot of the ultrasound they did too (It's at :32). Just tossing that in there to check out if you like.

Also there is this image: (If I recall correctly, below the line is blood going down, and above the line is the retrograde flow, so obviously the above the line stuff should be muted compared to the below the line part)



from: https://vss121.webhosting-secure.com/ia ... xtven.html

Figure 8: This waveform in the internal jugular vein shows evidence of central venous obstruction. The pulsatile waveform due to changes in the cardiac cycle are no longer being transmitted due to an obstructed brachiocephalic vein.


On occasion, a maneuver that is indicative of central venous obstruction is the response of the vein to rapid inspiration (or a "sniff"). The vein diameter decreases in response to rapid inspiration since the negative intra-thoracic pressure promotes blood flow into the chest. A normal response can exclude obstruction of the more central veins (brachiocephalic veins and superior vena cava). However, patients with very chronic central venous obstructions can have large collaterals veins and regain normal response to this respiratory maneuver.

When compared side by side as diagnostic criteria, loss of pulsatility seems to perform with greater accuracy than evaluations of venous dynamics due to respiratory phasicity.


Also:

Figure 7a: The Doppler velocity tracings from the central veins (subclavian, internal jugular and subclavian) will typically have a pulsatile appearance. Forward flow into the atrium causes a sharp increase in blood flow velocity that decreases as the atrium fills. Blood flow will then reverse as the ventricle contracts and some of the blood in the atrium can flow retrograde.

I have posted some doppler images on my Facebook wall. There are a bunch more. Try to find the ones that match left and right. WOW!

http://www.facebook.com/album.php?aid=9 ... fc04d96f8b

CCSVI-Atlanta provided a page listing the 5 elements of the Zamboni protocol. I had 3 of the 5.


Here is what my report said:
(Notice the right side is half as big as the left)

R CCSVI 90°
R JUGULAR CSA : 2.55 mm² R JUGULAR DELTA CSA : 12.97 mm²
R CCSVI 0°
R JUGULAR CSA : 15.52 mm² R JUGULAR DELTA CSA : 12.97 mm²
L CCSVI 90°
L JUGULAR CSA : 5.00 mm² L JUGULAR DELTA CSA : 24.79 mm²
L CCSVI 0°
L JUGULAR CSA : 29.79 mm² L JUGULAR DELTA CSA : 24.79 mm²
RT IJV SUPINE: HIGH POSITION OF VALVE NOTED, IJV APPEARS TO WRAP CCA NEAR THE CCA BULB-BIFURCATION, FLOW DURATION NOTED TO BE > .88 MSEC MID IJV & AT LEVEL OF CSA MEASUREMENT, B-MODE ABNORMALITY APPEARS TO BE PRESENT (? SEPTUM ANTERIOR WALL & MULTIPLE FLAPS INFERIOR TO VALVE, ? THICKENED POSTERIOR VALVE VS. THICKENED LYMPH AT LEVEL OF VALVE)
RT IJV UPRIGHT: FLOW DURATION NOTED TO BE >.88 MSEC MID IJV, CSA MEASUREMENT APPEARS TO BE < 3 MM2
RT VV: APPEARS WNL SUPINE AND UPRIGHT
LT IJV SUPINE: B-MODE ABNORMALITY APPEARS TO BE PRESENT (? SEPTUM VS. MALFORMED POSTERIOR VALVE)
LT IJV UPRIGHT: APPEARS WNL
LT VV: APPEARS WNL SUPINE AND UPRIGHT
DCV: SUPINE AND UPRIGHT - RETROGRADE FLOW
COLLATERAL VESSELS: NOT OBSERVED
NOTE: PRELIMINARY FINDINGS INCLUDE AUTOMATIC SYSTEM CALCULATIONS AND ARE SUBMITTED FOR REVIEW TO READING PHYSICIAN FOR DIAGNOSIS[/url]

CaptBoo wrote:I have posted some doppler images on my Facebook wall. There are a bunch more. Try to find the ones that match left and right. WOW!

http://www.facebook.com/album.php?aid=9 ... 1548320287

CCSVI-Atlanta provided a page listing the 5 elements of the Zamboni protocol. I had 3 of the 5.


Here is what my report said:
(Notice the right side is half as big as the left)

R CCSVI 90°
R JUGULAR CSA : 2.55 mm² R JUGULAR DELTA CSA : 12.97 mm²
R CCSVI 0°
R JUGULAR CSA : 15.52 mm² R JUGULAR DELTA CSA : 12.97 mm²
L CCSVI 90°
L JUGULAR CSA : 5.00 mm² L JUGULAR DELTA CSA : 24.79 mm²
L CCSVI 0°
L JUGULAR CSA : 29.79 mm² L JUGULAR DELTA CSA : 24.79 mm²
RT IJV SUPINE: HIGH POSITION OF VALVE NOTED, IJV APPEARS TO WRAP CCA NEAR THE CCA BULB-BIFURCATION, FLOW DURATION NOTED TO BE > .88 MSEC MID IJV & AT LEVEL OF CSA MEASUREMENT, B-MODE ABNORMALITY APPEARS TO BE PRESENT (? SEPTUM ANTERIOR WALL & MULTIPLE FLAPS INFERIOR TO VALVE, ? THICKENED POSTERIOR VALVE VS. THICKENED LYMPH AT LEVEL OF VALVE)
RT IJV UPRIGHT: FLOW DURATION NOTED TO BE >.88 MSEC MID IJV, CSA MEASUREMENT APPEARS TO BE < 3 MM2
RT VV: APPEARS WNL SUPINE AND UPRIGHT
LT IJV SUPINE: B-MODE ABNORMALITY APPEARS TO BE PRESENT (? SEPTUM VS. MALFORMED POSTERIOR VALVE)
LT IJV UPRIGHT: APPEARS WNL
LT VV: APPEARS WNL SUPINE AND UPRIGHT
DCV: SUPINE AND UPRIGHT - RETROGRADE FLOW
COLLATERAL VESSELS: NOT OBSERVED
NOTE: PRELIMINARY FINDINGS INCLUDE AUTOMATIC SYSTEM CALCULATIONS AND ARE SUBMITTED FOR REVIEW TO READING PHYSICIAN FOR DIAGNOSIS[/url]

FYI Capt your wall setting is on private so nothing on there is viewable by the general public, unless of course you set it to that in your settings. I know I had the same disparity in size and that's been noted on many others too, yet some are equal sized also. It's interesting that the report noted no collateral vessels, but the retrograde flow is of course noted both supine and upright. You sure do have a lot going on all at once, flaps, valves, and the report appears to be pretty thorough and that is great for a UT scan. Hopefully very soon this level of scan will be available to all who seek it...

That "IJV appears to wrap CCA" part of course confirms what you already knew, but seeing it in a report is really something. Should be an interesting discush when you get the consult. Keep us informed of this very unique circumstance and what avenues you pursue...

Mark.

Try this link instead:

http://www.facebook.com/album.php?aid=9 ... fc04d96f8b