My Albany Angio Adventure

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

Postby belsadie » Fri Oct 29, 2010 5:28 am

Here comes another "wait and see" experience...Angios in Albany in July, ...no immediate, noticeable, improvements.....
3 months later, the f/u ultrasound showed that the ballooned jugs were still patent and the blood flowing "nicely". The ballooned azygos vein could not be visualized, bu it was assumed patent. [fingers crossed] I must say I was somewhat taken back when I was told that two Zamboni criteria were still present, but that didn't justify a re-do. They were "insignificant" (?) So I wait now for 6 months more for another visit and ultrasound.
I must say, though, I am just now beginning to feel a bit more strength in my left leg [the one most effected]..Maybe it's wishful thinking or something...We'll see. I was told to be patient and exercise cautious optimism, so I guess that's where I stand [pardon the pun]now,
Good Luck to all of us "wait and see"ers! :roll: :?: :?: :?: :?:
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Postby Rieja » Mon Nov 08, 2010 12:49 pm

Update

Week 8 of 12 - a little late :P
No Change

Current Negative Results:
none

Current Positive Results:
• Dream
• Foot Spasms at night controlable/gone
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Postby Rieja » Sun Nov 14, 2010 7:30 pm

Update

Week 9 of 12
No Change

Current Negative Results:
none

Current Positive Results:
• Dream
• Foot Spasms at night controlable/gone
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Postby Rieja » Thu Nov 18, 2010 4:19 pm

Update

Week 10 of 12
No Change

Current Negative Results:
none

Current Positive Results:
• Dream
• Foot Spasms at night controlable/gone
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Postby Rieja » Sun Nov 28, 2010 11:14 am

Update

Week 11 of 12
No Change

Current Negative Results:
none

Current Positive Results:
• Dream
• Foot Spasms at night controlable/gone
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ccsvi

Postby blossom » Sun Nov 28, 2010 8:36 pm

rieja, thanks for updating. wish you the best. it is still a win for sure if you are not getting worse.
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Postby Rieja » Tue Nov 30, 2010 2:16 pm

Pretty much I am stable.. though 3 months is hardly a trial. It will take some time before the evidence reveals itself. I still have 1/2 a week to go before my 3 month period is up.

i will be writing Dr. Mandato to see what he thinks and if I would need any further testing :)
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Postby Cece » Tue Nov 30, 2010 3:00 pm

belsadie wrote:I must say I was somewhat taken back when I was told that two Zamboni criteria were still present, but that didn't justify a re-do. They were "insignificant" (?)

belsadie, I'm following your story and Vivianne's, who posted up in pklittle's thread about having 3 out of 5 zamboni criteria still present the day after the procedure.

Rieja, glad to see the updates. :)
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Postby Rieja » Wed Dec 08, 2010 2:07 pm

Update

Week 12 of 12
Noticed that when I look down I no longer have the pins and needles running along my extremeties. It used to be that if I touched my chin to my chest, this feeling would happen.

Current Negative Results:
none

Current Positive Results:
• Dream
• Foot Spasms at night controlable/gone
• Extremety pins and needles gone when looking down


What to do now...
Wow... after 3 months I am still unsure how the whole thing went. I am going to contact Albany and see how they would like me to proceed. Although the apparant positive results are rather insignificant versus my other symptoms, I still believe that more time is needed. I don't mind :)

I will still read all the threads here and pay close attention to others progress. I think I will update THIS thread at least once a month or if something "happens" - even just for my own "journal".

I wish that everyone that had this procedure would keep up to date here instead of trailing off... the unknown is so frustrating. ;)
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Postby Rieja » Wed Apr 06, 2011 11:24 am

HOLEY MOLEY!

April already?!?!?

Well. here is a bit of an update:

Current Negative Results:
none

Current Positive Results:
• Dream


So, the foot spasms are back. I have not talked to Albany since then but email is going out now. I will be asking for a referral for an Ultrasound. Maybe they see if I got all clogged back up again :P
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Postby Vivianne766 » Wed Apr 06, 2011 11:40 am

Cece wrote:
belsadie wrote:I must say I was somewhat taken back when I was told that two Zamboni criteria were still present, but that didn't justify a re-do. They were "insignificant" (?)

belsadie, I'm following your story and Vivianne's, who posted up in pklittle's thread about having 3 out of 5 zamboni criteria still present the day after the procedure.

Rieja, glad to see the updates. :)


That is correct. That is why I am thinking about having a 2nd procedure. I must say despite the 3/5 criteria still present I did see some benefits. Going on 6 months now, I have more energy and better bladder control. Yhe benefits started about 3 weeks AFTER the procedure.
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Postby PointsNorth » Wed Apr 06, 2011 6:30 pm

I had immediate results (fatige/cog-fog) but it only lasted 8 days. Tested positive for 2/5 Zamboni criteria day after procedure. Considering second procedure but holding off as I feel we're still on the steep part of the learning curve. Hopefully we'll see IR Best Practices/Consensus Doc before year's end?!

PN
Albany October 2010
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