This Is MS Multiple Sclerosis Community: Knowledge & Support

After consulting with Dr. Dake, my PCP has scheduled me for a CT venography of my jugular and azygous veins, this Thursday at 9 AM. I believe Dr. Dake spoke to the radiologist at the hospital where I'll be having the procedure done, to fully brief him on what precise protocols need to be followed.

I spoke with Dr. Dake, and he wants me to send him a disk with the results. Should be interesting...

_________________
Marc
www.wheelchairkamikaze.com

Glad you coordinated this with your pcp, Marc. I know it took some effort.
all best,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Hope the best for ya Marc..

great marc, good luck with it and at the NIH.

That's fantastic!

The more local centres that can do this successfully the more the wealth of information grows.

I'll check in when I get done with the scan tomorrow morning. Not sure I'll have any results by then, but if possible I'd like to walk away (or role only, actually) from there with a disk in hand...

_________________
Marc
www.wheelchairkamikaze.com

Sounds like you have all the right people looking at all the right things. Good luck!

Marc,

Did you get any results?

Michelle

Had the scan this morning, which took all of about 15 minutes. I'm going to try to pick up the disc and radiologist's report tomorrow afternoon, provided it's not raining and I can get out on my wheelchair.

I can't wait to see the results. I've got to make a few copies of the disc, one for Dr. Dake, one for the NIH, and one from my PCP. If the scan shows any blockages, I'll also make one for my neurologist, because at that point it will be time for him to get on board...

_________________
Marc
www.wheelchairkamikaze.com

I'm keeping my fingers crossed for nice weather tomorow for you.

Marc...
Assuming the scan was negative for stenosis? Or you couldn't get there?
Let us know when you get a minute. Inquiring minds and all that....
thanks!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Got the results...

The study found "some asymmetry of the jugular veins, consistent with normal variation."

It seems that the report concentrates more on the condition of my sinuses than on my veins, and no mention of my azygous vein is made at all.

Naturally, I looked at the images, but couldn't really make much sense of them. I'm pretty good at reading MRIs, but it appears that CT images are a different matter altogether...

I hope these guys did the correct scan, I know that the technicians did check with the head radiologists, who Dr. Dake had spoken to.

I'm sending the disc off to Dr. Dake next week, so it will be interesting to see what he has to say. I hope my suspicions about them doing the wrong type of scan are incorrect.

Please note, my MS diagnosis is very much up in the air at this point. The doctors at the NIH are scratching their heads over my test results and disease presentation, my primary neurologist has said that I might just be suffering from the "Marc disease", and one of the world's foremost experts on mitochondrial disease (Dr. Hirano at Columbia Presbyterian) examined me and said that he was pretty sure that I don't have mitochondrial disease, but was also pretty sure that this isn't MS. There is obviously something serious going on in my CNS, as my right side is for all intents and purposes paralyzed, and I have a very large and invasive lesion at the base of my brainstem, but my test profiles and clinical presentation don't fit the diagnostic criteria of any of the usual suspects...

Leave it to me to stump the panel...

_________________
Marc
www.wheelchairkamikaze.com

Thanks for the info, Marc.
I think the report probably refers to the dural venous sinuses, sometimes just called "sinuses". (The dural venous sinuses drain into the internal jugulars, and sure would affect your brainstem.) Our other Mark (skydog) had some issues that high, and no azygos problems, as diagnosed by Dr. Dake. He had stents placed at the top of his jugulars. I'll bet the scans were done thoroughly and correctly. I really wish you some answers, Marc. I can only imagine how difficult this journey has been for you, and I admire your tenacity and intelligence.
night!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Marc what a journey for you. Getting diagnosed was not fun in the first place I can't imagine having to go back into limbo and starting over.

I am glad you have a chance to have Dr Dake look at your scans. One way or the other you can have an opinion on the scans that is reliably reflecting this model so you can put it to rest.

good luck Marc with all of this. I hope you get some answers soon.

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics