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Nunzio wrote:Hi Cece, Blossom and CD,
thanks for your wishes which came to fruition.
I cannot imagine a more knowledgeable and thorough doctor than Dr. Sclafani. In fact, sorry to tell you CD, he did not find problem in all three areas; he found problems in all 4 areas and treated them.
As expected I had narrowing in my left IJV due to narrow valve which he dilated. Next he dilated my right hypoplastic IJV even though he did not give me much hope there.
Then he looked at my azygous vein where he found 3 problem areas which were dilated. Finally he looked at the iliac vein where I had an unusual problem where the vein was split in 2 segments with
blood being pushed toward the azygous vein using the iliac-lumbar vein as a collateral, so he dilated both segments to improve the flow.
The procedure lasted over four hours, not the 30 minute common in other places.
I am already experiencing some improvement , I can walk better and I have more strength in my right hand.
Amazing news, Nunzio. Four hours! I got off easy at an hour-and-fifteen.
So happy to hear of the immediate improvements. That bodes well for gradual improvements too.
With the iliac, were the two segments pushing on each other, like in a partial jugular duplication? Was it more of a septum dividing one vein? I'm not used to iliac vein issues being able to be treated, although we see some stenting of May Thurners. I am really happy for you, Nunzio.
I cannot imagine a more knowledgeable and thorough doctor than Dr. Sclafani.
Still not sure how we got him, still very glad we did.
Great news, Nunzio! Out of curiosity, did Dr Sclafani prescribe longer than 20 days dose of Arixtra? The reason I ask is that he had me on Arixtra for 30 days, then 30 days of Plavix (only because I still had 1 refill from the first procedure with another doc), then baby aspirin indefinitely. I, too, am PPMS with screwed up iliac.
newlywed4ever wrote:Great news, Nunzio! Out of curiosity, did Dr Sclafani prescribe longer than 20 days dose of Arixtra? The reason I ask is that he had me on Arixtra for 30 days, then 30 days of Plavix (only because I still had 1 refill from the first procedure with another doc), then baby aspirin indefinitely. I, too, am PPMS with screwed up iliac.
Wishing you more & more improvements!
sometimes i mix things up because i am still looking for enhancements in how i do things
newlywed4ever wrote:Great news, Nunzio! Out of curiosity, did Dr Sclafani prescribe longer than 20 days dose of Arixtra? The reason I ask is that he had me on Arixtra for 30 days, then 30 days of Plavix (only because I still had 1 refill from the first procedure with another doc), then baby aspirin indefinitely. I, too, am PPMS with screwed up iliac.
Wishing you more & more improvements!
sometimes i mix things up because i am still looking for enhancements in how i do things
CD, thank you for those prayers, there is no shortage of good people around here undergoing this procedure.
For the switch-up in Arixtra, it makes sense to me that best practices may involve prescribing a longer duration or a stronger drug or two drugs (plavix and arixtra?) in some patients. Pacific Interventionalists sometimes sends patients home on no blood thinners at all, not even a recommended aspirin, and I can't agree with that, but what I found interessting at Pacific Interventionalists is a patient's report that her doctor looked at the follow-up ultrasound to see how much flow had been achieved and then chose what anticoagulation he'd prescribe based on the flow. The idea is that, if the flow is strong, less anticoagulation is needed, but if the flow is poor, more is needed.
I was given no post-procedure medication. There were some anti-coagulant shots pre-procedure. That's all. He told me he would have advised aspirin, but since I'm allergic to it, nothing. That was over 5 months ago, I don't know if he's changed, or if I was special in some way. Maybe Dr. S can comment if AAC now has a standard of care in that regard. I did just fine with nothing. (Edited due to bad use of the English language.)
I am glad you mention that from time to time, CaptBoo, it is good to remember that aspirin-only can be successful. These veins are so important, I want our investigators to be further along than they are and have these answers, even though they just got started. If Dr. Sullivan is still prescribing aspirin and he's collecting data for the internal AAC registry, then that can be compared with the data being collected by the AAC doctors using stronger anticoagulation, and maybe some patterns will begin to emerge.
I was out with some friends last night, who had not seen me since before the procedure. They are all happy for me, they thought I looked like I was doing really well. One of my friends said I looked like I'd "woken up from a slumber" and why had I never told her I had MS! It was because I didn't have the physical disability and that with my worst symptoms being fatigue and cognitive issues, I didn't really want to be pointing those out in case anyone hadn't noticed.
To the cognitive issues, she said, "But you're the smartest person I know!" which still has me feeling complimented. Even though, how do you explain it? A person can be smart and have cognitive issues. Smart comes in handy to help hide the issues but they are still there. Memory issues, that feeling of cotton in the head, working memory or being able to keep more than one thing in the mind at once and follow complicated instructions...I remember specifically, five years ago during a relapse, when I suddenly could not follow the instructions in the show Survivor when Jeff Probst is explaining a challenge. One week I could, the next week I couldn't. What else is cognitive? In conversation, when I repeat myself, it's not always that I forgot what I just said, it's because I'm trying to circle in on what I meant to say and failed to get expressed and I usually fail the second time too. Words getting tricksy, with "closet" coming out instead of "cupboard." When I see a friend, being able to remember where we left off the last time we saw each other. This is an incomplete list!
But here is a better list:
* I tried out my old contacts to make sure that what I should be ordering is my new, lowered prescription and, yes, the old ones give me headaches and the new one is right.
* I don't notice the colors being so bright as often, except at times: the street signs when I am driving, the beautiful blue eyes of one of my friends last night, and again yesterday the unnaturally red vine-ripened tomatoes at the grocery store. Just one is shocking, but there's that whole pile of them. Red upon red. And other people not looking twice, as if it's normal and has always been that way.
* We have stairs in our house and I don't debate with myself if it's worth going up or not for whatever I need upstairs, I just go.
* I remembered to buy the lightbulbs at the store yesterday, with no note to remind me of this, and three out of four burned out in the kids' bathroom.
* Sleeping deeper, dreaming, waking refreshed.
* My husband says the kids are more likely to come to me than they were before, they can tell a difference.
* This week in particular, it feels like day by day I am getting a little more energy and a little more present cognitively, I really like it.
* I've tried to describe this but just that difference, from being in constant discomfort and fatigue-pain, to being comfortable all day long, even if I'm tired, to have it be a comfortable tired! This is the best improvement. Feeling like my thoughts are together is the second best.
* foot drop still improved, more likely to place my foot directly forward without thinking about it when walking (instead of slightly off); only my right foot was affected
* the numbness still gone from my arm since two days post-procedure, I've had a few tingles in it since, but right now it feels completely normal
* An easier time with whatever needs to be done.
* Sometimes my feet and hands are as cold as they used to be and sometimes I experience actual warmth, which again is odd.
* Bladder improvements, less frequency, less retention.
Not being in pain changes everything, it has been so long that I have been struggling with it, and for it to be changed this easily...can't call it a miracle, it's human ingenuity, it's a catheter and a balloon, it's a scientist in Italy who saw what was there to be seen.
Cece---- Thanks for the update. It is truly inspiring to hear of the wonderful outcome. I can't be happier for you & your family. Never thought I'd see this in my lifetime and even though I saw no positive changes I'm so happy for you & all the others with such positive results.
nunzio, so happy to hear you are doing so well. keep it up and keep us posted--please. you are ppms?? oneday soon i hope to read and experience we are all finally having our day in the sunshine.
Hi everybody and thanks for your wishes.
I am still doing well and today we walked from ground zero to little Italy which I do not think I would have attempted before. I would have liked to show you my Iliac vein pictures but I could not figure out how to download the images from Dr. Sclafani DVD.
Tomorrow I will fly back home and I will figure out a way to do that.
I am also very glad Cece is continuing to improve.
Everybody here brings happiness, somebody by coming,others by leaving. PPMS since 2000<br />
