Cece's turn

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

Postby Cece » Sun Mar 06, 2011 10:49 am

Nunzio wrote:Well Cece, my previous 2 doctor did not see it because they enter on the right side. On my request the second doctor agreed to enter on the left side the second time and saw it but, from his picture, most of the flow was going back to the right Iliac vein, beside my Azygous was "Normal" so he elected not to treat it.

This really worries me. Not so much for your case because you continued until your issues were found and treated. But for most people the procedure is at great cost and travel (and may be the only procedure they'll get) and then they get a doctor who doesn't check the iliac or who calls an azygous normal when there is a visible valve issue?

My impression is that at first glance CCSVI seems simple, but in truth there are many complexities, and not all doctors are recognising the complexities.
Apparently stenting works well in these cases, but I agree in the more conservative approach; we have time for a more invasive treatment later.

Yes, this makes much sense, and who knows? Maybe the conservative treatment will be durable.
Last edited by Cece on Sun Mar 06, 2011 8:31 pm, edited 1 time in total.
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Postby CD » Sun Mar 06, 2011 3:00 pm

soapdiva, I will be sending good thoughts and prayers to John for Monday at 11 am. I hope be has many improvements.

C of G, I am a New Yorker too. Worked there half my life. I loved how busy it was and all the stores and people are amazing. My MS Specialist was at Columbia/ NY Pres. Upper Westside. I went there until 2004.

When I moved I still traveled by bus to see him. I love New York. Miss it so much. We go when we can to visit. Only 1 hour away to lower Manhattan.

Drury, I wish your daughter a very Happy Birthday today. Celebrate good times. Yahoo!
I also hope she gets treated ASAP. Darn ins companies. Is she doing okay since she fell? I hope so.

Nunzio, what symptoms does the pinched Iliac vein cause for you? Did you feel any improvement when that nasty duplication was eliminated?
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Postby Nunzio » Sun Mar 06, 2011 3:59 pm

CD wrote:Nunzio, what symptoms does the pinched Iliac vein cause for you? Did you feel any improvement when that nasty duplication was eliminated?
CD

I had very mild symptoms; my left foot is slightly larger; about one shoe size larger than the right and I loss all my hair on my left upper thigh.
The problem is that the blockage is bypassed using the ileo-lumbar vein which eventually drains in the Azygous vein, overloading it. So you can have a perfectly compensated May-Thurner syndrome with minimal symptoms and significant effect on CCSVI.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby soapdiva884 » Sun Mar 06, 2011 4:45 pm

Thanks for the good wishes, we are here in Brooklyn NYC and it is raining and so windy...........looking forward to tomorrow am. We are staying at the Super 8 on 3rd Ave. It is brand new and comfy. About 1/2 block from Hotel Le Bleu. Super 8 is a HUGE amount cheaper than Le Bleu and just as nice. I will update everyone tomorrow night when we get back to the hotel and settled in. Thanks again.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby CD » Sun Mar 06, 2011 5:02 pm

Nunzio wrote:
CD wrote:Nunzio, what symptoms does the pinched Iliac vein cause for you? Did you feel any improvement when that nasty duplication was eliminated?
CD

I had very mild symptoms; my left foot is slightly larger; about one shoe size larger than the right and I loss all my hair on my left upper thigh.
The problem is that the blockage is bypassed using the ileo-lumbar vein which eventually drains in the Azygous vein, overloading it. So you can have a perfectly compensated May-Thurner syndrome with minimal symptoms and significant effect on CCSVI.


Sad, but interesting, how we all have such unique problems surfacing since the CCSVI procedure became available. That certainly is a conundrum, to say the least. Can you get by with how it is now or do you think it will cause more problems with the Azygos vein.

Overloading it will just make the Azygos bigger, no? It can take the pressure since it is in the chest. I don't think you want to touch the femoral artery at this point. I have heard people getting stents to correct MT. But in your case, you would be pushing on your artery, which could cause a bulge and a AAA. JMO
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Postby Cece » Sun Mar 06, 2011 8:28 pm

soapdiva884 wrote:Thanks for the good wishes, we are here in Brooklyn NYC and it is raining and so windy...........looking forward to tomorrow am. We are staying at the Super 8 on 3rd Ave. It is brand new and comfy. About 1/2 block from Hotel Le Bleu. Super 8 is a HUGE amount cheaper than Le Bleu and just as nice. I will update everyone tomorrow night when we get back to the hotel and settled in. Thanks again.

I will remember this, I was already tentatively recommending the Super 8 based on the price, the location, the breakfast, and being brand-new. Now I will drop the tentative! I've had a few people email me asking the hotel I stayed at, it's an expensive area, it's good to have options.

Best wishes tomorrow, Billie and John!!!!
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Postby Cece » Sun Mar 06, 2011 8:46 pm

quick update of my own:
Exercising: it is completely different. I haven't heard much about this from others? For me it is yet another profound change. I made it to the gym yesterday, did the elliptical machine, and there was none of the head symptoms I would normally get. Aerobic exercise always made me feel unwell. Now my body gets tired, but not my head.

Then today, I wake up, and I realize I could go to the gym again today and do aerobic again. This is not normal at all. I've been to the gym two days in a row sometimes in the last few months, but never aerobic twice in a row, always just for the strength training machines on the second day. I need a day's recovery from aerobic. Only that is past tense: I used to need a day's recovery.

I went back to the gym today, because I could, and I did my usual strength-training, and despite having not done the machines in the last three weeks out of fear of straining my neck (which strained on such things as lifting water bottle cases and small children, so this was not unfounded), I was able not just to start up again at the weight amounts I'd left off but was stronger and able to do more. And I did the arms row too, because I could, even though I usually skip that one, and I was not tired at the end of it, so I did my full elliptical 28-minute workout, and again it is completely different, I am fine by the end of it, not feeling like I am pushing through the head symptoms and exhaustion. And then I leave feeling good instead of previously I'd always be in a hurry on my way out because I needed to rest/collapse.

Very very successful and different.
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Postby SaintLouis » Mon Mar 07, 2011 2:01 pm

That's great Cece!
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Postby prairiegirl » Mon Mar 07, 2011 2:06 pm

Just great to hear, Cece; happy for you... :D
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Postby Bizzy » Mon Mar 07, 2011 4:38 pm

Wonderful news Cece. I'm also hopeful to be able to share happy news once my blood clot is cleared up.

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Postby Cece » Mon Mar 07, 2011 5:34 pm

Stopped by the gym again today. ;)

I am hopeful that exercise might get my energy up. My fatigue is very different than it was pre-procedure and it is lessened but it is still present. I also took my last dose of Arixtra two days ago!!

Thanks prairiegirl, SaintLouis and Bizzy! Bizzy, can't wait to hear happy news from you.
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Postby CD » Mon Mar 07, 2011 5:49 pm

Wonderful news! "Cece's Turn" was a terrific one. So very happy for you Cece. :D

You'll be wearing that red thong bikini soon. Once the weather turns warm, Cece will be in model shape. All toned and strong.

Way to go girl. May you be blessed with all this and more. Your little ones need a strong Mommy, and tag you're it.
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Postby CD » Mon Mar 07, 2011 6:00 pm

Sue, I check out mine tomorrow. 4 hours to get there and 4 hours to get home the same day/night. This is the 3 month check-up, with US and consult.

I'll be praying the whole way that all is well, and perhaps I can get off my Warfarin. I think I might need it for 6 months, I really don't remember if we discussed a time limit. More like an US testing decision.

Best of luck to you too Sue. I hope you get "Clot Busted" soon.
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Postby Cece » Tue Mar 08, 2011 10:41 am

CD, all the best today, I hope the ultrasound shows good flow. That is a long trip in one day.

I am trying to remember how long Dr. Dake kept his patients on Coumadin, I can't off the top of my head.

The return of the red thong! I thought I left that discussion behind in Brooklyn. :wink:

I mentioned energy a few posts up, it is on my mind because I've been lower in energy than I would've hoped, but now in the last few days it seems to be picking up. I am doing really, really well today. More things seem possible and more is getting done....
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Postby PCakes » Tue Mar 08, 2011 1:22 pm

Cece wrote:I mentioned energy a few posts up, it is on my mind because I've been lower in energy than I would've hoped, but now in the last few days it seems to be picking up. ....


Hey Cece.. :) to see your updates.. Are you hydrating????? and no.. diet soda doesn't count :P
Cheers,
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