Well, that was a waste of time / effort

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Well, that was a waste of time / effort

Postby ndwannabe » Mon Apr 19, 2010 1:11 pm

Have my "results" from what the doctor called an "angiogram".

It was a CT scan of neck and chest.

Here is the report:

TECHNIQUE: Consent for intravenous contrast was obtained. A helical scan was obtained from the external auditory canal to sternoclavicular joint after the intravenous administration of non-ionic contrast. Axial images are displayed at 5 mm intervals. Multiplanar reformations were generated.

FINDINGS:
NECK: The jugular veins appear patent bilaterally. There are some filling defects within the right mid jugular vein, which is likely related to mixing artifact. No significant stenoses are identified within the jugular veins. The external jugular veins are not well opacified. There is no cervical lymphadenopathy.

CHEST: The azygos vein is not well visualized secondary to timing of contrast and diminutive appearance as it courses along the spine. The distal portion of the azygos vein does not appear stenotic as it empties into the superior vena cava.
There is no mediastinal lymphadenopathy. No gross pulmonary consolidations or effusions are noted. There is a low-attenuation lesion in the right kidney, which is too small to characterize, but may represent a cyst.

1. The visualized portions of the jugular veins appear patent. The external jugular veins are not well opacified.

2. Opacification of the azygos system is suboptimal secondary to timing of contrast which had to be also tailored for visualization of the jugular veins. Additionally, the diminutive size of the azygos vein also limits the evaluation. However, the distal portion of the azygos vein as it joins the superior vena cava
appears nonstenotic and is of normal caliber. If there is clinical concern, a repeat chest CT can be obtained. However, timing of contrast for azygos opacification can be challenging.

So, basically they are telling me -

"Nothing that is OBVIOIUSLY out of order",

"We could not see the external jugulars well",

"We could not see the azygos well",

"There is something that does not appear right with right mid-jugular (filing defects), but oh, it's probably due to the fluctuations of the contrast"

"Everything that we COULD see appears fine"


I also got the CD and in the images there was NOTHING that could be recognized as a specific vein structure. Here is the closest the images got to showing anything.

Image

Conclusion - get your testing with the doctors who at least know what CCSVI is. Do not make my mistake of thinking "scanning is a scanning is a scanning". Not at all.
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Postby Rose2 » Mon Apr 19, 2010 1:39 pm

nd-
I think the report reads to be as frustrating as you say.
Why CT and not MRI?
Do they want to test again to observe those areas they could not observe?
Sorry it was so vague.
Sincerely,
Rose ;)
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Postby cheerleader » Mon Apr 19, 2010 1:47 pm

There are some filling defects within the right mid jugular vein, which is likely related to mixing artifact.


Looks like a segment of the right jugular is missing on your pic...if they are not sure why, and just assuming it is due to "mixing artifact" (which means they think the undyed blood is mixing with the dyed blood and not showing up) shouldn't this situation be clarified??? I know they say there is no stenosis, but having a section missing from your right jugular is curious, and should be followed up with doppler or MRV or venography....right?

Since you are in the Bay Area, might these radiologists call Dr. Dake at Stanford?

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ndwannabe » Mon Apr 19, 2010 2:00 pm

cheerleader wrote:
There are some filling defects within the right mid jugular vein, which is likely related to mixing artifact.


Looks like a segment of the right jugular is missing on your pic...if they are not sure why, and just assuming it is due to "mixing artifact" (which means they think the undyed blood is mixing with the dyed blood and not showing up) shouldn't this situation be clarified??? I know they say there is no stenosis, but having a section missing from your right jugular is curious, and should be followed up with doppler or MRV or venography....right?

Since you are in the Bay Area, might these radiologists call Dr. Dake at Stanford?

cheer


I doubt it.

The doctor grudgingly prescribed the scan upon my insistence. He did not believe it would yield any results.

I have a feeling they were glad to rid of me in a "see? told you this was a crazy idea!" kind of way.

I need somebody who 1) knows what to look for 2) wants to find it to spare me the unnecessary insurance claims and extra radioactive material in my veins :roll:

I think a better bet is to look for another doctor who is on-board with CCSVI. The word on the street is that there are some Bay Area doctors that are already looking into this.
Last edited by ndwannabe on Mon Apr 19, 2010 2:03 pm, edited 1 time in total.
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Postby Asher » Mon Apr 19, 2010 2:02 pm

This is exactly what appeard on my '09 CT. This is merely a 'slice' of the scan and this is a typical CT image based on which one can't establish a CCSVI diagnosis. A CT is indeed a waste of time, money and the radiation comes free of charge :lol:
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Postby ndwannabe » Mon Apr 19, 2010 2:04 pm

Asher wrote:This is exactly what appeard on my '09 CT. This is merely a 'slice' of the scan and this is a typical CT image based on which one can't establish a CCSVI diagnosis. A CT is indeed a waste of time, money and the radiation comes free of charge :lol:


Thank you Asher! You are giving me hope! I was almost ready to take their word for it...
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Postby mila77 » Mon Apr 19, 2010 2:07 pm

ndwannabe,

I did the same thing last November when I've first heard of CCSVI. I went to my GP, discussed this new theory with her and she was totaly in favour but at the clinic where sho works (as well as at any other private clinic in Warsaw) nobody was willing to do dopler ultrasound of jugular veins, simply because they never performed it before so all I was offered was jugular veins CT scan.
According to my CT everything was fine but I did not give up and waited for my appointment in Katowice in February and it showed stenosis in right jugular and reflux in left. This Friday I am ging back to Katowice for MRV and on Monday I will have my treatment.
So, u r absolutely right when u say that it is a waste of time and money to let people who dont know what CCSVI is do the scanning.

Mila
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Postby Asher » Mon Apr 19, 2010 2:12 pm

Churchill

“Never give up. Never, never give up!. We shall go on to the end.”

And

“Men occasionally stumble over the truth, but most of them pick themselves up and hurry off as if nothing happened"
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Postby ndwannabe » Mon Apr 19, 2010 2:14 pm

mila77 wrote:ndwannabe,

I did the same thing last November when I've first heard of CCSVI. I went to my GP, discussed this new theory with her and she was totaly in favour but at the clinic where sho works (as well as at any other private clinic in Warsaw) nobody was willing to do dopler ultrasound of jugular veins, simply because they never performed it before so all I was offered was jugular veins CT scan.
According to my CT everything was fine but I did not give up and waited for my appointment in Katowice in February and it showed stenosis in right jugular and reflux in left. This Friday I am ging back to Katowice for MRV and on Monday I will have my treatment.
So, u r absolutely right when u say that it is a waste of time and money to let people who dont know what CCSVI is do the scanning.

Mila


Mila, best of luck next Monday! Don't forget to update us :)

I had the ultra-sound as well and was too done in a half-a** way :roll: - only a short portion of my veins was looked at.

Thanks everybody for chiming it :) It is somewhat a relief to see that I am not the only one who is stumbling along the way.
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Postby CureIous » Mon Apr 19, 2010 6:50 pm

Yeah getting that one slice is okay, but did they do a side view also? I always use the piece-of-paper analogy when talking to people, hold up a paper in front of you, looks 8.5x11, turn it sideways, oh boy that's thin...

Sorry you along with many others are meeting with such apathy from people who's stated career goal is supposedly to better your health and help you. I'm absolutely disgusted with the lack of professionalism on the part of some of these caretakers. Then again I'm impressed by others who genuinely seem to care and will fight for you. Trouble is getting thru the first bunch to find the second bunch....

Mark
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
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