What's not found by some is found by others

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

What's not found by some is found by others

Postby NotFound » Wed Dec 15, 2010 4:20 pm

In May 2010 I was told by Polish doctors that no CCSVI was found in my case.

Having strong doubts I sent the very MRV images they did to Dr. H

3 months after, Dr. H kindly (may I repeat, this was VERY kind of him) sent me the analysis of my images.

I wrote about it before - "pancaking" of jugulars and SEVERELY pinched azygous.

So, I made an appointment with Pacific Inteventionalists to have my procedure done.

Well, that day was today.

As of three hours ago I am now a proud owner of 1 stent in my 90% pinched AND twisted about itself azygous.

Also, my left jugular was apparently 50% closed, so another possession of mine is a very sore left side of the neck from having my left jugular ballooned (so far it held, unlike Azygous that twisted right back up after the ballooning attempts).

No miracles to report (yet?), neither they were expected.

I am still groggy from sedation - was supposed to be "conscious sedation" (and I DID tell them I was a light-weight :) ), but apparently under this "conscious sedation" I put up a fight and would keep turning my head, arguing that it hurts :oops:

So, I had to be put fully under.
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Postby silverbirch » Wed Dec 15, 2010 4:23 pm

Wishing you a speedy recovery but take it slow if you can get my drift.
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Postby Cece » Wed Dec 15, 2010 5:40 pm

Congrats, NotFound!!!

Not sure how that azygous could've been fixed without a stent, glad in this case that was an option! It reminds me of MegansMom's description of a twisted candy wrapper.
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Postby NotFound » Wed Dec 15, 2010 9:55 pm

As I was driven from the clinic, there was this truck ahead of us

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Postby eric593 » Wed Dec 15, 2010 11:54 pm

LOL :D

So glad you persisted and found the answers. I hope your health improves as a result.

Does this mean that you are owed a refund from Poland? I'm sure you're not too happy about the time, effort and expense that you had to expend for a misdiagnosis.
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Postby NotFound » Fri Dec 17, 2010 6:24 pm

Thank you all.

eric593 wrote:Does this mean that you are owed a refund from Poland? I'm sure you're not too happy about the time, effort and expense that you had to expend for a misdiagnosis.


That's an excellent point. I'll have to try to figure out how to approach this.
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Postby Sawdoggie » Sun Dec 19, 2010 12:17 pm

I had an MRV that hinted at some issues and the venogram found major issues, including an essentially closed left jug that looked okay on the MRV (blood was flowing in it, it was just coming in and recirculating back up but the movement in it showed a nice picture on MRV). I was amazed at how much the MRV missed but it did tell me that I should pursue further.
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Postby Cece » Sun Dec 19, 2010 1:06 pm

If you'd have had a Haacke protocol MRV, the flow charts that are included (based off of many slices of flow as measured in one cardiac cycle or heartbeat) would have shown which direction the blood was going.

Just like there are normal dopplers or Zamboni ferrera 5-criteria dopplers, there are ordinary MRVs or Haacke MRVs. :D
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Postby CuriousRobot » Sun Dec 19, 2010 1:33 pm

Could you please elaborate some more on "pancaking?"
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Postby NotFound » Sun Dec 19, 2010 1:53 pm

CuriousRobot wrote:Could you please elaborate some more on "pancaking?"


Basically (again, my understanding based on the files) is akin to taking your "hose" and squishing it downwards, so it is not a straight tube, but a tube with "flattened out" portions.

This was not a major problem though.

Sawdoggie, in Poland they DID go in and they DID perform not only MRV but a full venography.

So, this is not about what MRV might have missed (although even I could see it on MRV when pointed by Dr. H with arrows),it's about them missing it (or choosing to miss it) while actually being inside my veins.
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