anna d successfully treated. Negative MRV sometime back.

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

anna d successfully treated. Negative MRV sometime back.

Postby CureIous » Tue Jul 13, 2010 2:49 pm

Excellent news! I asked Anna if she minded me updating on here in her stead. She was successfully treated (angio, no stents) this morning for 3 stenosed veins, both jugulars and the azy.

If y'all will recall, http://www.thisisms.com/ftopic-9580-days0-orderasc-0.html, Anna's first MRV was negative, but the scan wasn't that great. She exhibited great poise though in remaining calm, digging in for the long haul and we sent the scan off to a certain well known Dr. who looked at it and concurred with the assessment, no stenosis.

She then received a better MRV+assessment, which seemed to show something amiss. After a venography today, the three areas were discovered and treated, and she's back enjoying life as of this moment!

Kudos to Anna for her persistence, tenacity, and for all her FB group, some of which are on here, for banding together and supporting each other, great bunch of people and mostly Canadians to boot!

Think I'm missing a negative doppler in there somewhere, January seems like years ago in this fast paced world...

Hopefully Anna will serve as an inspiration to all, to NEVER give up until you've exhausted every resource..

I'll let her come in to report how she's feeling and such at her leisure. Will let the cat peek it's head out of the bag a wee bit though and say "trending positive"...

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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Postby annad » Thu Jul 15, 2010 7:38 am

Thanks Curious!
Yes, I was one of those with negative MRVs and pretty non-impressive doppler results so I went in this with low expectations thinking I'll be thrilled if they find something. So when I thought I heard the words 'balloon' I had to ask the doctor, "did you say balloon?" lol

I had stenosis in my azygos and both jugulars. I was only ballooned no stents were used.

After my release I noticed, better bladder control, better balance (did 20 heal to toes across our hotel room), I could walk and talk and look at my husband without losing my balance (before I'd have to look at the floor and not up or I'd fall over). Swallowing! I had no clue how bad my swallowing food was until it improved. I had to usually push the food down with a gulp of water now, it goes down effortlessly! I also have this urge to show off to everyone like a child who has just learned to walk and I say, "watch me, watch me!" lol Then I add in the watch me walk as I look away or to the side etc. Oh, I've just become hours of entertainment for my friends and family! LOL I also seem to have this side effect of giddiness!

I hope this dream never ends!

This certainly is, "the best prize" as Dr. Zamboni said.
:)
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Postby CureIous » Thu Jul 15, 2010 9:03 pm

I think we should all be proud of Anna, she has accomplished much, not just by acquiring treatment by a reputable Dr., but banding together with others to share the experiences and report so others can learn too. It cannot be easy when after all the hype and noise, you find out "oops, sorry, not you, negative MRV, see I told you so" not necessarily in that order. Remember this was *all the way back 7+ months ago*. Doesn't that feel like an eternity now considering?

Maybe Anna will tell us some more stories after some time goes on. I think she twirls the cane like Fred Astaire now instead of actually using it... She's not just sitting on her results either, she's out there helping others to understand all that's involved here too so they can make an educated decision. I sure wouldn't want to go mano y mano with the group she has assembled... :)

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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Perseverance PAYS OFF!

Postby Kate_PghPA » Fri Jul 16, 2010 5:21 am

Kudos to all involved...!!!
this is a Lesson for many
...not to give up, be tenacious...persevere, Fight that Good Fight!!

Thank you for sharing and continuing to give hope to all!!
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MRV is expensive and may mislead

Postby MarkW » Sat Jul 17, 2010 5:24 am

Pleased to hear that this turned out successfully for Anna.
If you read through the research you will learn that MRV is not reliable and is expensive.
Doppler (with trained operator) is the quick and cheap screening test, it is non invasive. Selective Venography (with knowledgeable surgeon/radiologist) is the diagnostic gold standard for CCSVI but it is invasive.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby annad » Sat Jul 17, 2010 5:44 am

Mark,
Hind sight 20/20 . . . What I know now is different from what I thought I knew back in November of 2009.

Like most things, until you have the patient on the OR table and you 'open them up' you really don't know what you are dealing with. Yes, venogram, venogram, venogram :)

I am thankful for my improvements!
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Re: MRV is expensive and may mislead

Postby CureIous » Sat Jul 17, 2010 9:43 am

MarkW wrote:Pleased to hear that this turned out successfully for Anna.
If you read through the research you will learn that MRV is not reliable and is expensive.
Doppler (with trained operator) is the quick and cheap screening test, it is non invasive. Selective Venography (with knowledgeable surgeon/radiologist) is the diagnostic gold standard for CCSVI but it is invasive.
Kind regards,
MarkW


Yes, but I will add most of the Stanford people were screened via MRV with negative ultrasounds, though that was mostly the shortcomings of the equipment for the UT's. I had 3 MRV's, my insurance paid for all of them, it wasn't expensive to me at all, though I fully understand many are not in such an advantageous position when it comes to "cash and carry". Now I have no insurance at all so glad to have had it done while the getting was good as they say. Glad to see the center opening up in Atlanta, things have come a long ways in the past year!

Hopefully by this time next year, heck next month, we'll have Zamboni-style UT centers on every corner. Send every CIS patient in for UT screening long before they get a definitive MS dx. Guy can dream right?

For now, if one has insurance and can't get a UT+ test, either due to technology or technician shortcomings, MRV's with the Haacke protocol might be the next best thing for screening. MRI machines are everywhere, transcranial dopplers+qualified techs are not. I'm for whatever works the fastest/cheapest with the least amount of travel, to overstate the obvious...

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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