2nd procedure done!

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

2nd procedure done!

Postby soapdiva884 » Mon Mar 07, 2011 7:32 pm

We are back to the hotel. John had u/s at 9 am. Procedure was scheduled for 11 am. but was done about 1 pm. and we left the clinic after 5 pm. LONG DAY!

Some ballooning of the jugulars was done, but there was a thrombosis that could not be broken through. Azygous was fine! Some valve abnormalaties that were ballooned too. No miracle on the table for John unfortunately.

I was told by Dr. Sclafani that we need to brag to everyone that John has the BIGGEST veins he has ever seen. John also has the longest neck they have angio'd. TOO FUNNY!

John is resting with ice packs and advil and tons of pillows. Hotel rooms are not the best for recovering from any kind of procedure. He has a headache and tons of neck and groin pain right now.

Dr. Sclafani could not be more of a gentlemen. He hugged John when we left and said "your a good man". He had tears in his eyes when he consulted with us before hand about how he hopes to make things better for John. I could see the dissappointment in his eyes when he told us about the thrombosis that he could not break through.

Dr. Sclafani also was carrying his new percusion hammer around and proudly displayed it on the counter for us to examine. He is very proud of that hammer!

And we can add concierge to Dr. Sclafani's long list of specialties. He made us reservations for a wonderful Jazz club tomorrow night in Manhatten and gave us the ins and outs of parking in NYC. I can not say enough good things about Dr. Sclafani, he TRULY cares about all of his patients. It's not just clinical or numbers to him. We are blessed to have him as a physician and friend.

I also met a wonderful family who was there with their Son. He had the procedure before John. They were wonderfully informed, supportive and great company. So nice to meet new friends. We exchanged emails to keep up with eachother.

Anyway, just wanted to update everyone who has been praying and worrying about John today. I will keep updating as the days go on.
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 Cece » Mon Mar 07, 2011 8:23 pm

I am sad to hear about that thrombosis. :(

Thank you for the update. I am now picturing him as rather giraffe-like, who knew! The jazz club should be fun.

I wish it hadn't thrombosed though. So unfair.
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ccsvi

Postby blossom » Mon Mar 07, 2011 8:37 pm

so glad your boyfriend is doing ok. hopefully as time passes he will see improvements. the thrombosis he has, did dr. sclafani have any suggestions as to what can be done? this does seem to be an ongoing problem for some of us.

thanks for sharing your experience. please keep us updated.

enjoy the jazz club----they say music is healing.
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Postby pklittle » Mon Mar 07, 2011 9:05 pm

soapdiva884 - was the thrombosis new since the November procedure? Was John on any bloodthinning meds? Sorry to hear about this.
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Postby Vivianne766 » Mon Mar 07, 2011 9:56 pm

Wishing more and more improvements for John.
You should give it some time.
:)
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Postby Loobie » Tue Mar 08, 2011 5:42 am

Good to hear BJBC. Have fun tonight getting 'jazzed'!
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Postby CCSVIhusband » Tue Mar 08, 2011 6:39 am

I hope this doesn't get taken the wrong way - no, more than that, I hope this isn't the wrong place to pose this question (because I don't think there's anything wrong with the question) ... I don't intend it to be so - but I think SoapDiva's comments brought the thoughts on to me.


A Thrombosis ... is basically a scab right? A clot that forms a scab?

Normally the body has ways to deal with these clots (it happens when you bruise deeply, etc) ... and I hear about athletes (Tommy Frazier comes to mind) as someone who get clots in their legs, but they are able to get them taken care of.

So, when you say thrombosis, what does that mean exactly? Does that mean occlusion? Because you mention ballooning still, but not being able to break the thrombosis.

And how long does it take for a thrombosis to be come permanent? Like a scab it should heal right? Or does it become an occlusion? I'm confused.
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Postby Cece » Tue Mar 08, 2011 7:47 am

It could recanalize on its own, that is the hope.

Here is a thrombus:
Image
Occlusion is another word for it. Yes, it could heal or recanalize on its own or become permanent, sadly.

I just saw where you said, Billie, that Dr. Sclafani did balloon a few valve abnormalities. Maybe that will bring improvements or stability. I am rooting for the two of you, as always.
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Postby soapdiva884 » Tue Mar 08, 2011 8:17 am

CCSVIhusband wrote:I hope this doesn't get taken the wrong way - no, more than that, I hope this isn't the wrong place to pose this question (because I don't think there's anything wrong with the question) ... I don't intend it to be so - but I think SoapDiva's comments brought the thoughts on to me.


A Thrombosis ... is basically a scab right? A clot that forms a scab?

Normally the body has ways to deal with these clots (it happens when you bruise deeply, etc) ... and I hear about athletes (Tommy Frazier comes to mind) as someone who get clots in their legs, but they are able to get them taken care of.

So, when you say thrombosis, what does that mean exactly? Does that mean occlusion? Because you mention ballooning still, but not being able to break the thrombosis.

And how long does it take for a thrombosis to be come permanent? Like a scab it should heal right? Or does it become an occlusion? I'm confused.


Thank you everyone for the well wishes and words of encouragement.

CCSVIHusband: I believe thrombosis to mean there is a clot blocking the way for the IVUS and the catheter to get through. He said he could not break it up or get through it. Just kept going through the vein one way or the other. It was the side that was ballooned in Nov. so the thrombosis occurred after at some point.

John was on Arixtra for 20 days after the first procedure and is again this time. There was mention of follow up U/S sooner this time (20 days) because John could have some clotting issues we don't know about that his body just does naturally.

The ballooning I mention was the other side that was not thrombosed. There was a vein in the LONG neck area that actually had TWO valves instead of one that had abnormalities. Dr. Sclafani thought John must have been an athlete with the large and long veins. Nope, not an athlete.

John did not sleep well, but seems to be in pretty good spirits this morning. We are going to venture out to sight see. I will drive of course. He did alot of icing of the neck last night which seemed to help alot. Have a good day everyone.
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 prairiegirl » Tue Mar 08, 2011 9:30 am

Hope there will be more improvements in time; all the best!
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Postby AMJ » Tue Mar 08, 2011 6:20 pm

I hope John starts seeing improvements soon.

All the best.

Anne
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