freezing cold feet

[Cece]

I have a question, for those with freezing cold feet pre-procedure and warm feet post-procedure! Did it happen right away, like that same day? I've had improvements I didn't expect, but this is one I was expecting after all the reports of it, and this is one I didn't get. My feet are freezing right now, as if they have an ice pack deep inside. Are there people who still have freezing cold feet post-procedure? Or who experienced gradual warming?

[newlywed4ever]

Cece - as you know I've had 2 procedures. After the first, the ice cold foot was immediately warm but, sadly, the benefit disappeared. After the 2nd procedure (1/28/11), I now have off & on warm foot - more often cold than warm but maybe(?) not quite as icy cold...confusing! But I also have issues of an occluded LIJV that cannot presently be treated. It will be interesting to hear what others have to say.

[jacksonsmommy]

It felt like someone was pouring warm water down my legs while I was on the table. Oddest sensation ever. The color in my feet, hands and face also improved immediately.

For the first few months after the procedure my feet would go cold in patches or alternate between hot and cold. They were warm most of the time though.

Now they only get cold if I am fighting an underlying infection or I am getting run down.

Autonomic response??

[1eye]

I think the foot thing is only really bad for some. Your feet get purple. Mine were like that, and I kept getting gashes on feet and shins. None lately (I credit venoplasty). I get cold hands/feet if I don't wear a sweater, but I keep having to say: "no, it's not hot in here." Right now I have socks on and a warm sweater-vest which keeps my core warm.

No cold problems. Exercise helps, too.

[CCSVIhusband]

I have a question, for those with freezing cold feet pre-procedure and warm feet post-procedure! Did it happen right away, like that same day? I've had improvements I didn't expect, but this is one I was expecting after all the reports of it, and this is one I didn't get. My feet are freezing right now, as if they have an ice pack deep inside. Are there people who still have freezing cold feet post-procedure? Or who experienced gradual warming?

I was just discussing this with the good doctor.

After my wife's 1st procedure: (azygous & illiac treated) - her feet immediately warmed up. That did go away over time.

After my wife's 2nd procedure: (both jugulars treated - NO treatment of azygous) - her hands and nose (both usually very cold when upright) are warm when she lays down after (give-or-take) 10 minutes. Remember, the jugulars really open up and do their job when you are laying down ... But yet her feet remain cold - while her hands and nose warm up.

I demonstrated this to her last night (I've noticed it ever since her 2nd procedure). She never noticed. She went up to get ready for bed around 915 last night ... I had her touch my hands and face and I kissed her nose - and said, "ice cold". She finished her nightly bathroom routine, and got in bed around 930. I came up around that time and brushed my teeth and what not. When I went into the bedroom ... (probably around 940) I kissed her nose and touched her hands - huh BOTH WARM(er than mine), and BOTH full of color. Just by laying down and opening those jugulars.


To me, this makes sense.

The AZYGOUS takes some amounts of blood from the lower extremities via it's connections through the ascending lumbar veins (especially in cases of May-Thurner), the Illiac vein, the IVC - (which is why I've asked Dr. Sclafani a couple times if you remember Cece about the IVC and if it plays any role).

The JUGULAR veins drain into the Superior Vena Cava via the brachiocephalic veins - which also takes blood from the arms/hands via the deep veins when they form with the subclavian vein. So the arms/hands warm-up are (IT WOULD SEEM) very much related the flow through the SVC tied to the JUGULARS, BRACHIOCEPHALIC, SUBCLAVIAN and the arm veins that drain into them.


I'm starting to see more and more what Cheer continues to say.

It's ALL about flow. When you have GOOD flow from the areas, the heart acts as a pump, pulling and pushing blood. When you have BAD flow from the areas, you still have remaining problems - cold feet, etc.

[CCSVIhusband]

As I recall Cece - your azygous wasn't treated by Dr. Sclafani?

my logic might be completely wrong (I'm but a simple engineer), but it logically follows from the above thought process right?

[1eye]

The blood you get that makes your face warm and red is arterial blood. It is warm because you are reacting to brief cold air. It also may be warmer on account of more volume of warm blood from more flow but I dunno. I thought there is supposed to be flow all the time, just through different passages when you lie down. Incidentally, there seems to be a place at the top where the big head/neck veins go briefly back down, or are at least horizontal, and maybe that's part of the reason for the lying-down difference.

I find when I lie down I am warmer because of covers.

To complicate things more, an effect of CCSVI Procedures is said to be a loss of pallor (upright) which might mean that your head has blood in it for a shorter time, and overall all your oxygenation is working better.

There has been study of reflux under varying arm positions. Though I don't know what the positions were, the difference was marked.

I sent this to Cheerleader in November but it's still in my Outbox.

http://www.thisisms.com/ftopict-14541.html

[CCSVIhusband]

But I believe it was Dr. Sclafani who has mentioned, a slowdown in the system in one area, will slow-down the system entirely to match the slowest point.

If your jugulars are totally occluded (both of them). The body is going to recognize that and try to compensate somehow ...
either put less blood into the brain ...
or build new outputs (collaterals which are insufficient) ...
or you're going to have back-flush (CCSVI) and leakage (hmmm, crossing the blood brain barrier anyone?).

Also ... she WASN'T under covers, so that argument doesn't hold water - in this case.
(like I said - I've noticed this almost EVERY day (specifically when I remember to check) since her 2nd procedure - JUGULARS opened ONLY, lay down, jugulars flow). I never mentioned it to her until last night ... she has never noticed. Now we're going to test it again tonight. Want to make a bet what the results are tomorrow?

Regarding the nose, you could be correct ... less blood in the head when upright ... so cold. But then that explains that FLOW is the problem ... because the brain is still drained through the SVC when upright via the vertebral veins draining into the subclavian/brachiocephalic/SVC system. So goes the arms/hands.

So the arms/hands only get pink/warm when flow significantly increases when laying down? OK - this pretty much proves my point - that when there is better flow (jugulars open and blood volume increased to head/brain/face) both in and out ... things warm up. Whether the nose is related, I guess we could argue. But I'd say increasing in-flow (laying down and the body's recognition of great outflow through open jugulars) and opening the outflow pathways, allows for more fresh, warm blood that warms the nose/face).

Now moving on to cold feet. A HUGE percentage of blood volume when upright is below the heart (I believe I read) ... so why wouldn't your feet be warm - if your argument about it being arterial (causing the heat) hold weight? Unless something was limiting flow back (the azygous, the IVC, the illiac, hell maybe the veins of the leg).

it's all about poor circulation ... and fixing what causes that.

[Cece]

As I recall Cece - your azygous wasn't treated by Dr. Sclafani?

That is right.
My pre-imaging MRV also showed reflux in the azygous and what looked like a valvular stenosis, low in the azygous, not in the arch where issues are normally found. I will review the discs Dr. Sclafani gave me....

From what I'm hearing here and what my original impression was, the warm feet usually happen immediately. Flow or autonomic nervous system both seem like explanations. I've had freezing cold feet for a very long time, it might be that it's too bad of case to improve that quickly. CCSVIhusband, that is all very interesting, I wonder if you are on to something.

[EJC]

Emma's feet warmed up the same day, along with her hands.

However they now ebb and flow with heat and cold, but they aren't the stone cold ice blocks they were pre procedure.

He hands went blue yestersday, which at night was followed but a lot of arm and leg pain.

Today her right hand is much warmer than her left hand.

[CCSVIhusband]

don't get me wrong, my wife's feet are warm from time to time - not ALWAYS blocks of ice - same goes for her hands from time to time when upright (but after her jugular liberation now EVERY time she lays down, boom, almost instant warm up) ... (of course, we may all remember that her azygous is open from time to time too).

it's just not like her hands/nose ... cold mostly, lay down ... warm almost immediately.

So, and that gets me wondering, wouldn't inhibited "FLOW" when UPRIGHT, produce the same effects as inhibited jugulars do when laying down? ... the azygous, the vertebrals, the (IVC, illiac, femoral, or some other vein we don't know about).

And then releasing that blockage (jugulars laying down = warm hands) ... produce the same effect for the "upright" veins?

So finding that particular blockage and correcting the issue in the vein (when upright) = warm feet.

[CCSVIhusband]

Emma's feet warmed up the same day, along with her hands.

However they now ebb and flow with heat and cold, but they aren't the stone cold ice blocks they were pre procedure.

He hands went blue yestersday, which at night was followed but a lot of arm and leg pain.

Today her right hand is much warmer than her left hand.

EJC - I hope you don't mind me using your information to semi-further my point (or at least use your wife's case to say there might be some merit ... again based on a VERY LIMITED sample size).

from your post after Emma's procedure

Today Emma undertook her Liberation procedure at the Edinburgh Clinic in snowy Scotland.

As I type this she is still in the recovery room but I've already had a chat with the surgeon, Dr Reid.

They found the following:-

Right jugular - malformed valve, opened using a baloon - normal flow restored.

Left Jugular - malformed valve, plus the entire jugular vein itself malformed, at least half the normal diameter. Dr Reid treated this vein but was reluctant to overtreat, flow has been increased but not to the rate preferred. This is a little wait and see. It's also difficult to predict how this particualr vein would effect things as technically it's not "stenosed" but has actually formed at a reduced size than would normally be expected.

Azygos - A very significant narrowing found at the top of the azygos, again this was balooned and the flow relief in this particular area was not far off "removing a cork from a bottle" - this was quite significant. The dramatic flow change could not be overstated enough by Dr Reid.

We have yet to have another chat with the surgeon this afternoon, I will take notes and post more information as I get it. I'll also post updates initially on a daily basis noting any improvements the Emma has.

All of the malformations found are considered congenital, although this can only be summised rather than being absolute fact it is a reasonable assumption in the eyes of Dr Reid.

I have my fingers crossed.

Emma decided this morning to stop injections of Copaxone.

The procedure itself took around 90 minutes. Follwed by a further 30 - 60 minutes in recovery depedning on the amount of anesthetic required.

[fiddler]

Cece, I didn't get any improvement in these symptoms, as far as I can tell. It's a little hard to be sure, since this varies from one day (or hour) to the next, and sometimes my left foot actually feels too hot, but I still have a cold left foot fairly often, and about once a week its so cold I have trouble falling asleep because of it.
...Ted

[garyak]

after my 1st procedure my feet were warmer with much better color with less swelling. That disappeared when I restenosed 3 weeks later. After my second procedure they never really warmed up and color again was poor. They are still cold after my 3rd procedure but have better color and less swelling-so go figure

[garyak]

knee high compression socks help keep the swelling down and help keep them from feeling ice cold.