This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello Hello,

Well after months of calling and talking to the best Doctors in Neurology and Radiology in Chicago, and being scoffed at, I was able to receive an MRV from an Interventional Radiologist who was able to conform to the Stanford Protocol. I have to say he was incredible, as was his Tech who after never imaging the procedure before was able to adjust to the specs like a musician playing flawless for the first time. This is a medium size local hospital. Originally, the MD even offered to do the endovascular procedure, claiming he does more difficult procedures than vein angioplasty every day. I was elated for about 24 hours, until the word came back that it is too experimental. The rug was pulled, and then the frustration set in.
I will keep my contact anonymous, but I will mention that he is aquanted with Dr Dake.
After some persuasion we did agree to do the imaging....
and here are my results for you Jr Surgeons out there...

Axial T@ and Flair, sagittal T1images, sagittal FLAIR images, post gadolinium T1 images were obtained as well as the phased contrast exam also was performed, and contrast-enhanced MR venogram was performed using real time imaging.
There were patent superior sagittal and inferior sagittal sinus vein of Galen, interal cerebral veins. The left transverse sinus is smaller than the right. Sigmoid and jugular veins are patent.

The left internal jugular vein is very small 2 mm in diameter, compared to the right side. The right internal jugular vein is 13 mm, at the level of the inferior thyroid gland, to about 3 mm in diameter, in the lower neck is 11 mm, and in the upper neck is 11 mm again.

Impression

1. Left transverse sinus is smaller than the right.
2. Left internal jugular vein is very small.
3. There is narrowing of the right internal jugular vein at the level of the thyroid for a length of 2 cm.

Soo, that is my story....Good news finally identifying there is a stenosis, Bad news, no treatment available.

I was one of the December cancellations at Stanford, and at this time I will have to hope for the good Dr to receive his funding to begin the trials.
And then be lucky enough to get in line for follow up.

I am meeting with my local Radiologist, to try and begin imaging others in the area, and if he will consent I will post the details. I have a mini network of MS'rs that would benefit from the image step.
I honestly believe my Dr would be able to treat as well...he has a fearless nature and great confidence among other qualities. Maybe someday.

Keep on keeping on

Mark


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DX 1999 EDSS  4.5  Stanford Appointment cancelled 12-09

Hi Chicagoboy! I was one of the Stanford cancellations too. I was to have the procedure on Dec. 9th. I understand your frustration. But you have made some terrific progress. You actually have scans in hand that show stenosis. This puts you at an advantage. Have you touched base with every radiologist in your city? Medical schools? Give it another try. They might be more willing to meet with you since you have the proof on the scans. This is what I did. I took my Stanford images and found an interventional radiologist who will do the procedure on me. I don't think he would have paid any attention to me if I didn't have those scans showing the stenosis. Good luck and don't give up.

Please keep us informed...I am also in Illinois and have an appointment with an interventional radiologist on 4 March for an initial consultation. I would be the second patient he has had for possible CCSVI.

The thing which amazes me is that I get the impression is that the actual procedures (balloon or stents) are no big deal to them, being very similar to what they are already doing. Detection and location of the venous problem seem to be the big hurdles.

Donnchadh

I am in the far north suburbs of Chicago as well

please keep us informed, and let us know if the IR you found is willing to do more scans

Thanks
Robin

This is very encouraging...please keep me in mind as well if or when you are able to share more information...I wish you all the best in your search to find a doctor to do the treatment, this will surely be easier with those scans in hand!

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

...and i am in indy just south of you guys... ive spent days calling emailing etc i.r. docs all over the state and have gotten nothing as im sure youre used to... even at indiana university, known for their nursing and medical programs. lillys got their claws in deep.

Please keep my in the loop as well. I am in the Midwest area and have a great neuro who ordered a standard (yeah standard, not Stanford) MRV, and then the interventional radiologist met with me and wanted to do an angiogram based on the MRV (not because of CCSVI or MS or anything). It seems better than nothing, but certainly not the whole package yet. I'll keep you guys updated after the angiogram and let you know where it goes from there...

I also had a MRV and the interventional radiologist/neurosurgeon (he is both) wants to do an angiogram on Tuesday. He said depending what he finds, he will probably do stents. He said angiogram is better than doppler. I haven't heard of anyone having this test yet so berries, you are the first. I am kind of scared but will do it anyway. When is yous?

Magnolia, you may have heard of angiograms on this board, it is just the generic term for a vein-specific venogram or venography. Mine is coming up in a couple weeks. It probably would have been sooner, but the doc took some time to look over my CCSVI library. In the end, he didn't want to proceed under the CCSVI model, but wanted to treat it as he normally would an occluded vein. Is your guy using CCSVI info, or just treating the way he does every day? I find some comfort in the fact that these guys do this all the time, and have been for years and years, having nothing to do with MS. Now that I remember, my doc mentioned that balloons were not so great at holding veins open, so I'll see. Please let me know how it goes for you on Tue.

Hi berries, my guy hasn't even really heard of CCSVI so he is just treating me like every other patient. He said he has done thousands of stents in these veins and it is no problem. It is probably better that he goes his way for insurance purposes since CCSVI is not proven yet. I will keep you posted and you do the same since we seem to be in the same boat. I am in SC and lucky that I found this doc because we are so far behind in medical issues here. Good luck!!

magnolia30l, check you PM. Thanks, Katie41

Magnolia & Berries-- From what you say, it sounds like your docs have been doing IJV stenting for some time. I thought IJV stenting was new. How can it be "experimental" if IRs & vascular docs have been doing this for awhile.

Is anyone else confused or just me? What's the big fuss about doing these if your docs have done "thousands"?

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Kat

My MRV actually just showed an occluded left transverse sinus (which drains into the jugular), and a small, but not occluded left jug. He said I'm getting virtually no drainage on that side. My impression was that he was more worried about treating the transverse sinus, but I thought he might find something in the jug when he goes in.

Magnolia,

just checking in to see how your angiogram went

Hey guys. My angiogram is not until this Tuesday. Sorry for any confusion.

Kat, that was/is my question too. If this is done normally, then why do we even need to use the term CCSVI? The doctor said that stenting these veins is not normal but he has done it many times. I will just have to see what happens. I am getting more nervous every day.