Cece's turn

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

Re: hd vision

Postby prairiegirl » Wed Feb 16, 2011 5:00 pm

Cece wrote: It is very hard, as a writer, to say that something is indescribable in words, the instinct is to keep trying.

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!!
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Postby Cece » Wed Feb 16, 2011 5:04 pm

Donnchadh wrote:I am curious to hear if you think my description of ARIXTRA use was accurate? Useful? Helped you to prepare?

Hoping for continued improvements for you.

Donnchadh

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.
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Postby Cece » Wed Feb 16, 2011 5:12 pm

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.
Last edited by Cece on Fri Feb 18, 2011 9:05 am, edited 1 time in total.
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Postby Katie41 » Wed Feb 16, 2011 6:56 pm

A little late to the "party", I am! So excited for you Cece! :D 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 :oops: 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!!!
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Re: hd vision

Postby Cece » Wed Feb 16, 2011 8:12 pm

prairiegirl wrote: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!!

thank you prairiegirl :D

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?
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Postby Cece » Wed Feb 16, 2011 8:20 pm

Katie41 wrote:A little late to the "party", I am!

you missed the two-week countdown? :D
I was so excited and nerve-wracked going into this!
So excited for you Cece! :D 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 :oops: 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!!!

My husband said the same thing. I won't do it again....
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Postby bluesky63 » Wed Feb 16, 2011 8:59 pm

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 . . . " :-)
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Postby Cece » Thu Feb 17, 2011 12:58 pm

This study reports the effect of a moderate level of hypoxia on human color discimination. We found a generalized loss of color vision affecting both red-green and blue-yellow discrimination at an altitude of 12,000 feet. Although the residual color discrimination at this altitude was within age-matched, sea-level norms, a statistically significant increase over sea level error scores was measured on the Farnsworth-Munsell 100-Hue test and the Pickford-Nicolson anomaloscope. An analysis of psychophysical and electrophysiological studies indicates that hypoxia acts by depressing retinal ganglion cell activity and that it can affect photopic visual processes as well as scotopic vision. We conclude that studies evaluating man's visual performance at altitude must consider post-receptoral processes.

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.
Last edited by Cece on Thu Feb 17, 2011 2:37 pm, edited 1 time in total.
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Postby Cece » Thu Feb 17, 2011 1:08 pm

bluesky63 wrote: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 . . . " :-)

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.
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Postby Cece » Thu Feb 17, 2011 2:21 pm

just copying this over here, since I posted it elsewhere:
When you're reading reports from other people, you have to be skeptical.
It's hard for me to describe about the music, but no, from what I'm experiencing, I've been surprised by music a few other times too now since the procedure, it's something in my processing that has changed, my ability to not be jarred by it, and probably my basic sensory level hearing, not that I had been aware of hearing impairments before.
I've had difficulty in thinking when there's background noise, music can be a background noise. Since the procedure, I've been able to enjoy a tv show in a public lounge with other people around talking, I wouldn't normally have been able to do that.
I've had occasional tinnitus, too, perhaps that is a factor.
It was actually on the table, after the right jugular and before the left jugular.
I had 80% in the right jugular and 100% blockage in the left, so a pretty severe case.
The best I can do to describe it was that I was aware of it as music-noise before my blockage was cleared and was aware of it as music-music after the blockage was cleared.
I am also deeply enthusiastic about ccsvi, so would be a candidate for placebo effects, which is why I'm glad to have these surreal color changes, it's a very dramatic difference.
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Postby Drury » Thu Feb 17, 2011 8:18 pm

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.

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Postby Cece » Thu Feb 17, 2011 8:49 pm

Kleiner wrote:Great shots! Cece, I swear I can see you smiling in all of those images!! :D

Isn't that funny? Yes, I was smiling.
Kleiner wrote:So glad everything went well for you...you deserve it!

Hearing of your experience and knowing the time and thought Dr. Sclafani has put into enhancing this procedure is making my decision a lot easier.

Thanks You!
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Postby Cece » Thu Feb 17, 2011 9:04 pm

drsclafani wrote:6. advancement into azygous vein, venogram of ascending azygous followed by zero, twenty, seventy and ninety degree views of the azygous arch

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?

Image
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.
Cece was a great patient. She held her breath in the proper position and phase of respiration to obtain maximum imaging.


She even laughed at my jokes :lol:

You could make it as a comic if the IR thing ever stops working out.... ;)
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Postby Cece » Thu Feb 17, 2011 9:13 pm

NZer1 wrote:Hi Dr. S thank you so much for the time and explanation. Thank you Cece for sharing with us.
I have wondered if there is also a twist in the vein at the region of the two wastes?
Regards Nigel

Image
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?
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Postby CaptBoo » Thu Feb 17, 2011 9:59 pm

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