freezing cold feet

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

Postby MaggieMae » Thu Mar 03, 2011 11:09 am

Try WARM CREAM which can be purchased on-line at Vermont Country Store. My husband swears by it and uses it every night on his feet. Hasn't had a problem with cold feet since started to use a couple of months ago. I read that it dilates your blood vessels.
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Postby CCSVIhusband » Thu Mar 03, 2011 12:52 pm

Cece:

Thought this might interest you ... from the Loobie Round3 thread

Lew,

I am wondering if Dr. Dake just looked at your azygos, or tried ballooning it. At the Symposium in Brooklyn in July, Dr. Sinan told us that he uses the balloon as a diagnostic tool to find problems that simple IVUS and fluoroscopy can't see.

I was treated by Dr. Haskal 4 days later. He was at the symposium, and I wondered if he was influenced by Sinan. I asked him and he demurred. A friend was treated by him the week before the meeting, and he did NOT balloon her azygos because he didn't see any problem. She was just retreated by him last week, and sure enough he ballooned that azygos and found all kinds of twisting!

For me he inflated the balloon all through the arch. I did not have any smoking gun in there like I had thought, but it was great that we answered the question unequivocally.

I hope that whoever is treating you next will balloon the azygos even if it looks o.k!

Can't wait to hear how it goes. Fingers crossed!
Nicole


From my friend Lucky125 - so I'm sure she won't mind my quoting her. :D

it's not necessarily relatable to this discussion ... other than sometimes azygous issues are easily missed, even by good doctors. I'm still semi-convinced on the cold feet/azygous connection.

Also, have read about several people over on Facebook with the azygous ballooning and better than average results.
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Postby blossom » Thu Mar 03, 2011 2:36 pm

my feet and hands before procedure were icey and purple but when i would lay down "especially with ibt" they warmed up quickly if i got my body and head in a certain position.

after procedure my hands and feet definitly were warmer for a few weeks. but, the noviacane numb leg i got immediatly after procedure plays mind games as it triggered hard to explain things. not good. wish that would not have happened.

then things started to kinda go on and off. as i type this my hand is like ice but in a while it may be hot. body position arms and all seem to effect this. but not always.

i'm wondering if the sympathic nervous system isn't playing a part in this in some of us. besides stenosis. early on with me they thought i had rsd
reflex sympathic dystrophy--when the sympathic nervous system gets screwed up and the blood doesn't go automaticly where it should go. no cure for that either.
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Postby Cece » Fri Mar 04, 2011 11:41 am

blossom, I'm going to go with your explanation of sympathetic nervous system having something to do with it. I couldn't get my disc of images to work on my computer (I will try again later) so I looked at what Dr. Sclafani had posted the day after the procedure:
Image
Image
That is a large healthy azygous. During the procedure, Dr. Sclafani had said to Smitty that even if he found webs and membranes, he wouldn't balloon them; this is why the ivus never came out during my azygous interrogation.

I used to be a fan of Dr. Sinan's "radiologic braille" method (sorry, it's a catchy name) but if IVUS can do the job less invasively, IVUS is better. The azygous makes me nervous, since any procedure causes some intimal injury. There is also the anecdotal story of a patient who developed an azygous thrombosis and subsequent paraplesia after a ccsvi procedure. (This was after a full ballooning or possibly a stenting with a patient who may not have complied with taking anticoagulation. But it is grounds for caution, imo.)

I wish I'd had the instantly warm feet that others have had. On the day of the procedure, though, my feet weren't particularly cold. I should've gone barefoot, then maybe I'd have felt a change. ;)
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Postby 1eye » Fri Mar 04, 2011 11:58 am

Careful with those anecdotes! Soon there'll be a drug-company funded paper on it in a peer-reviewed journal, it'll be in the New York and LA times, and we'll all be set back 50 years... :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Wichita » Fri Mar 04, 2011 5:43 pm

My wife's symptoms are the "polar" opposite. Before treatment she always had red, swollen, hot feet and hands. She always kept the thermostat set low to keep from overheating.

Immediately after treatment, those problems went away. We now agree on a normal thermostat setting. Her hands and feet feel cool to the touch.

Before treatment she never wore a hat because she could not stand the added insulation. Now a hat is not a problem. We are hoping this means she will have better tolerance of heat this summer.

I guess you could say that your mileage may vary, and no doubt it will with MS.
Choose Liberation.
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Postby CCSVIhusband » Mon Mar 07, 2011 10:13 am

Cece:

Maybe of interest to you ... but I'm putting together an in-depth (as many as I reasonably can) chart of how the veins of the body tie together.

What drains into what ...
What a stenosis (of any kind) in one, and how it may affect other areas ...

I'm interested to see if we can tie my arguments together.

So far - though one eye says the facial veins are tied to the vertebrals ... it's not necessarily true.

The facial veins drain through the IJVs when the IJVs are opened up - which, again, would be laying down ... so, that goes to explain why her nose immediately warms up and her face color looks better when she lays down.

PS my hands and nose trick has worked 4 more nights in a row since I posted that ... wanna bet about tonight?
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