This Is MS Multiple Sclerosis Community: Knowledge & Support

Thanks for your descriptive and detailed posts, Cece; I think it is very interesting to hear your post-procedure changes/results. I hope you continue to notice improvements and I will echo all of those here giving you the very good advice to take it easy and get lots of rest!!

Yes, I found it very helpful, thank you for such a complete write-up of it. (Here it is, for anyone who missed it: www.thisisms.com/ftopicp-148648.html#148648). It helped, going into this, to know all the details. I am finding the Arixtra easier than Copaxone shots. It does not burn going in or develop welts. The needle is also self-retracting, which is fun and easier.

Since Cheer mentioned that her husband had a similar near-complete double-jugular blockage, I looked back for this:
http://www.thisisms.com/ftopict-7274.html
http://www.thisisms.com/ftopic-7191-day ... asc-0.html

He too mentions improvements in the OR! And improvements in appetite, alertness, "being goofy" - my kids are littler, I can be even goofier with them, and I have been this week since the procedure. (Ok, I goofed with them before too, but I'm able to enjoy it more now.)

I have been feeling really lucky.

It's wonderful to have other patient stories to read through, I can't imagine what it was like back then being the first. Knowing that he had a similar blockage, it is very encouraging to keep reading that at two weeks out, he had more energy than he did right after the procedure and that at six months out, even more energy.

One of my immediate improvements that's a little hard to describe is that I feel comfort instead of discomfort. At every turn, in nearly every way.

A little late to the "party", I am! So excited for you Cece! I have often marveled at your quick grasp of any new CCSVI info and your ability to ask the logical questions and then explain it so we all can grasp it. It's so wonderful that you can now benefit from this wonderful gift that Dr. Sclafani and many others are now able to provide us.

Now to the scolding.......Water bottles!!! What are you thinking??? The water can wait. You don't want to mess up the good doctor's work! O.K., O.K..... this is from someone who climbed 70 cathedral steps the day after her procedure You do feel so good that you so easily can overdo. You'll be able to fully enjoy your new life in a few days. Best wishes!!!

thank you prairiegirl

to the list of improvements I can add:

- vivid dreams last night (I'd been having what I would've called vivid dreams for the past few weeks, which marks an upswing for me; but this was distinctly better sleep and more vivid dreams; I did not sleep well in NY, either before or after the procedure, too much excitement!! But no vivid dreams there, just last night, three days post-procedure)
- an appetite, which is unusual for me
- feeling markedly better
- maybe an 80-85% reduction in fatigue (it's not entirely gone, but what remains is so different)
- I took nuvigil yesterday for the plane ride home, but otherwise haven't taken it since the day before the procedure, maybe I could be free of it?

you missed the two-week countdown?
I was so excited and nerve-wracked going into this!

My husband said the same thing. I won't do it again....

It isn't just a fluke! Now I have heard quite a few people mention that they actually felt an appetite again -- something that I was surprised to experience. I would never have expected such a simple but wonderful thing, and such pleasure in the food itself. Our senses come alive. Life on HD. And euphoria -- I felt such euphoria -- the HD emotional equivalent, perhaps?

As my beloved e. e. cummings says -- "we're anything brighter than even the sun . . . alive, we're alive . . . "

http://www.springerlink.com/content/u44986g78877w715/

Credit for this goes to cheerleader, she posted it in another thread.

Our HD color changes, for those of us who have them, could be measured pre- and post-procedure on the Farnsworth-Munsell 100-Hue test and the Pickford-Nicolson anomaloscope.

I think the HD analogy might hold true for other people but with the sort of blockage I had, it was more LSD than HD.

Color changes are still holding up, although I am not as shocked by it.

I was able to braid and fuss over my daughter's hair this morning. I normally would not do this because my arms get heavier as they are held up; they did indeed get heavier, not as bad as usual.

I've also either had improvements in the ability to taste or I had the best vanilla yogurt mixed with blueberry granola with flax ever made this morning. It seems to be specifically fruit flavors, as orange juice at the hotel shocked me every time.

Improvements in urinary urgency. Better balance, noticeable when getting dressed. Numbness still gone from my left arm and it feels odd to me.

Fatigue is greatly reduced but not gone. Vivid dreams for the second night in a row. My husband used the word miracle again this morning, for those who are tracking his impressions.

My neck soreness is getting much better but I still have a bit of a headache. I haven't taken tylenol yet today but I think I will now for the headache.

My daughter brought home a cold from NY (it must've been from Manhattan? There are no germs in Brooklyn....) and my sons both caught a virus here in MN, so odds are that I'll catch either the Manhattan bug or the MN one. So far so good, though.

so happy for you, bluesky, and I agree, that's just what it's like.
Do you have any repeat procedures coming up or is yours holding? We are such works-in-progress.

just copying this over here, since I posted it elsewhere:

Cece,

Love the updates. Glad you are all back safe and sound.

Hope the children feel better soon (wrap yourself in protective energy) and your husband is right.

Drury

Isn't that funny? Yes, I was smiling.

Does anyone know, with the technique of doing the views of the azygous arch at four different angles, are other IRs doing this as well?


Isn't it amazing.
An outpatient procedure that can make the vein in the first image into the vein in the last image.
Excellent images too. I love seeing the waist disappear like that.

You could make it as a comic if the IR thing ever stops working out....

I see what you were seeing there, Nigel, do you think it's a twist? Has anyone had a similar looking vein described as a twist?

I just want to reiterate that probably the most meaningful change for me has been recovery time. Before I would walk the dog in the morning, come home eat a bow of cereal and nap for the next three hours. Before MS I never napped. Now I walk the dog, eat breakfast and do what ever is next. My left leg is still very wacked out after two miles in the mountains, but after about thirty minutes, I'm back to normal. That's been critical to getting back to a more normal life.

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<div>There be no dragons   ...Reese Palley</div>