MRV Positive, Ultrasound negative..edit: added US pics

[Johnnymac]

Well we finally got to see the IR this afternoon. It was a definite emotional roller coaster and left us with more questions than answers.

The Doc said the MRV (done 2/26) showed definite stenosis, but that he wanted to do an Ultrasound to confirm it before going any further. The ultrasound was very interesting. She was only in a laying down position, slightly raised, for the US and both of her jugulars while breathing normally measured about 1mm, which the doc said looked like what he saw on the MRV. Then he had her hold her breath and exert pressure, called Valsalva. When she did this her veins opened to 15-20mm depending on how much pressure she exerted.

Based on that evidence the IR didn't think there was anything wrong with her Jugular veins. He said there could be something with the azygos but it would take a venogram to find out and he didn't want to schedule that until we've had a chance to see her Neuro who works in the same building as he does. He's going to give his report to the Neuro who we see next Thursday and we'll go from there.

I'm still confused, can someone tell me if a 1mm jugular vein while laying down and breathing normally is what it should be? If its not then there is a problem, but the fact she can open the vein on her own by exerting pressure means angioplasty would be pointless, and stenting would be very dangerous.

Ugh....I hate MS.

[avantitech]

I'm still confused, can someone tell me if a 1mm jugular vein while laying down and breathing normally is what it should be? If its not then there is a problem, but the fact she can open the vein on her own by exerting pressure means angioplasty would be pointless, and stenting would be very dangerous..

Hi Johnnymac,
I've had the ultrasound in early Feb and the bilateral IJV venoplasty procedure in early March.
In my opinion a very narrow IJV with minimal flow rate measuements in the supine position indicates a stenosis. If you were provided with a written report what was the flow rate? Here's the post with my ECD results:
http://www.thisisms.com/ftopicp-90387-.html#90387
I hope this helps
Regards,
..Adolfo

[Donnchadh]

Well we finally got to see the IR this afternoon. It was a definite emotional roller coaster and left us with more questions than answers.

The Doc said the MRV (done 2/26) showed definite stenosis, but that he wanted to do an Ultrasound to confirm it before going any further. The ultrasound was very interesting. She was only in a laying down position, slightly raised, for the US and both of her jugulars while breathing normally measured about 1mm, which the doc said looked like what he saw on the MRV. Then he had her hold her breath and exert pressure, called Valsalva. When she did this her veins opened to 15-20mm depending on how much pressure she exerted.

Based on that evidence the IR didn't think there was anything wrong with her Jugular veins. He said there could be something with the azygos but it would take a venogram to find out and he didn't want to schedule that until we've had a chance to see her Neuro who works in the same building as he does. He's going to give his report to the Neuro who we see next Thursday and we'll go from there.

I'm still confused, can someone tell me if a 1mm jugular vein while laying down and breathing normally is what it should be? If its not then there is a problem, but the fact she can open the vein on her own by exerting pressure means angioplasty would be pointless, and stenting would be very dangerous.

Ugh....I hate MS.

If I understand your post correctly, she was tested only in the supine position and not ALSO upright (sitting or standing)?

If only one position was tested, then the CCSVI protocol wasn't followed. It is essential to measure both erect and supine positions to determine any differences.

Frankly, if the MRV found stenosis, that's enough to warrant the next step, a venogram.

Donnchadh

[Johnnymac]

The ultrasound was very informal, there wasn't any particular protocol followed, he just wanted to get a veiw of her veins and see if he could find the stenosis he saw on the MRV. He found it, but because she was able to dilate her veins with the valsalva maneuver that in his opinion angioplasty would not do anything and that the veins were functioning properly.

Its a valid point, she effectively gave herself angioplasty with the valsalva and ballooned her veins, and I watched them go right back to 1mm thick.

The doc wasn't closed at all to CCSVI, its just so new and there have been so few real studies done to date that there just isn't enough evidence for him to effectively say one way or another and we were only his second MS patient seen specifically for CCSVI.

We hope to still schedule a venogram to get her azygos vein checked out, we will try and get her Neuro on board with that so they and the IR can work together.

So, here's a question for you. What if this stenosis in some patients is a condition where the vein on its own stays narrowed, but the vein itself has no problems expanding and contracting. This could explain the high restenosis rate in some of zamboni's patients, and could present further danger of stenting these veins. Could a sneeze or some other sudden burst of pressure cause these veins to dilate to the point where the stent comes loose?

[avantitech]

Johnnymac,
why don't you ask Dr. Scaflani at his thread on:
http://www.thisisms.com/ftopic-10680-165.html
Cheers

[Johnson]

I'm a little foggy, so bear with me.

Stenosis in Jugulars, which fill upon valsalve. Would that not be reflux?

Doc saw stenosis in JV on MRV, and with ultrasound while supine (when the jugulars ought to be wide open). Do they not image azygous with MRV?

I can't quite put it all together, but as I recall, Radek had a high jugular stent placed, and when another was placed downstream (or distal), it relieved the higher stenosis, and released the stent. Now, if your beautiful wife's real problem was in the azygous, could that possibly cause the IJV (soft) stenosis? Further, I understand that your wife (I lost her name, I'm sorry) has a fair bit of disability - isn't that frequently related to azy. as well? Would it make sense to treat the azygous (if it is stenosed), and watch what happens with the jugulars - before putting stents in JVs?

It is odd that a vein guy needs to confer with a neurologist about vein issues. If he can only know about the azygous with a venogram, why doesn't he take a look? It must be maddening for you.

As avantitech wrote, ask Dr. Sclafani.

[Rokkit]

Johnnymac, the ultrasound you got, while well intentioned, was worthless. You got the basic garden variety ultrasound which has nothing to do with CCSVI. The CCSVI ultrasound requires specialist training and is very hard to do. In my opinion, if the MRV showed stenosis, forget the ultrasound and press for the venography. MRV and ultrasound are both essentially screening tools, while venography is the gold standard. You already have an indicator from the MRV which is all you need to go forward, IMHO.

[Rokkit]

Look at it this way, if CCSVI could be detected the way your guy did the ultrasound, it would have been a known condition long, long ago.

[Donnchadh]

Johnnymac, the ultrasound you got, while well intentioned, was worthless. You got the basic garden variety ultrasound which has nothing to do with CCSVI. The CCSVI ultrasound requires specialist training and is very hard to do. In my opinion, if the MRV showed stenosis, forget the ultrasound and press for the venography. MRV and ultrasound are both essentially screening tools, while venography is the gold standard. You already have an indicator from the MRV which is all you need to go forward, IMHO.

I concur; there's enough evidence to justify a venogram.

Donnchadh

[Johnnymac]

I'm a little foggy, so bear with me.
Stenosis in Jugulars, which fill upon valsalve. Would that not be reflux?

I don’t know if that is an indicator of reflux.

Doc saw stenosis in JV on MRV, and with ultrasound while supine (when the jugulars ought to be wide open). Do they not image azygous with MRV?

Yes, stenosis was seen in both the MRV and on the Ultrasound while supine. He was unable to see the Azygos on her MRV and said he’d need to venogram to get a good look.

Now, if your beautiful wife's real problem was in the azygous, could that possibly cause the IJV (soft) stenosis? Further, I understand that your wife (I lost her name, I'm sorry) has a fair bit of disability - isn't that frequently related to azy. as well? Would it make sense to treat the azygous (if it is stenosed), and watch what happens with the jugulars - before putting stents in JVs?

When I first read about CCSVI I immediately thought her problem would be in the azygos. Her first symptom was gait/balance problems and her largest and most pronounced lesion is in her spine. I don’t know if azygos stenosis would cause pressure issues in the jugulars. Stents in the jugulars is not something we’re considering at the moment. If she can blow open her jugulars with valsalvia I am even more worried about stent migration. Even though her jugulars are narrowed, the problem doesn't seem to be with those veins in particular, it seems there is just a lack of pressure to open them up when she is supine.

It is odd that a vein guy needs to confer with a neurologist about vein issues. If he can only know about the azygous with a venogram, why doesn't he take a look? It must be maddening for you.

This IR has friends at Stanford and he wants to be careful and work in conjunction with the MS clinic here, which I think is a good thing as long as they all work together with open minds. He was open to the venogram to check out the azygos, but we have an appt with the Neuro next Thursday and he didn’t want to make any more plans until we’ve had that appointment. I am hoping we can move forward with the venogram after the Neuro appt.

As avantitech wrote, ask Dr. Sclafani.

I did shoot him a PM.

[Nunzio]

In the supine position the jugular veins should be dilated because they carry a large volume of blood.
The fact that they were not, indicates that there is a blockage higher up.
Filling up with the valsalva manouver indicates that they can dilate if a large volume of blood is present (by retrograde flow trough the valsalva manouver)
which confirms the higher up blockage.
This doesn't exclude an azygous defect, but definitely points to a jugular problem.
Venography will tell.
Good luck
Nunzio

[Johnnymac]

Here are some of the ultrasound images if you're curious. 2 images of each jugular, one while supine and breathing normally, the other supine while doing valsalva.

Left IJV normal:

Left IJV w/Valsalva


Right IJV Normal:

Right IJV w/Valsalva

[Nunzio]

By the way, Zamboni in the paper titled

The value of cerebral Doppler venous haemodynamics in the assessment of
multiple sclerosis

states that

We assess the eventual
presence of reflux in the IJVs and VVs in the same experimental
condition and never in a forced condition as Valsalva manouevre

Therefore Valsalva is not part of his doppler assesment of CCSVI.

[Johnson]

By the way, Zamboni in the paper titled

The value of cerebral Doppler venous haemodynamics in the assessment of
multiple sclerosis

states that

We assess the eventual
presence of reflux in the IJVs and VVs in the same experimental
condition and never in a forced condition as Valsalva manouevre

Therefore Valsalva is not part of his doppler assesment of CCSVI.

Yes, I think Valsalva is BS.

Johnnymac - you mentioned your gut instinct about the azygous, and in my experience, the gut knows. Even (good) Doctors rely on their gut instincts from time to time..

I'm glad that you were able to sort out my vague idea that stents in the "soft" stenosing jugs, might not be without risk of migration. I am loathe to say such things based on my own gut.

I hope you find answers. It is such a shame what happens to normal, beautiful people, and their care-givers. I hope that your beautiful wife has a lot of hope, and you too. We will beat this mess.

[Nunzio]

I have the answer for you: Zamboni found that the Cross Sectional Area of the Jugular vein (CSA) was very different in normal individual or individual with other neurological individual between the horizontal and vertical position,but was small and remained small in people with MS like you.
See the following link on page 25, top chart.
[/img]http://www.direct-ms.org/pdf/CCSVI/Zamb ... oppler.pdf