Cece's turn

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

Postby Cece » Tue Feb 15, 2011 7:54 pm

CaptBoo wrote:If I'm remembering my pilot training a few decades ago, commercial airlines pressurize the cabin to the equivalent of 5,500 feet altitude above sea level. I live at 7,000 feet. For me the plane ride is more pressure than home. If I had the procedure close to home, would you recommend I not drive to the house for three days? Of course it is a rhetorical question since the only places I've heard of doing it are near sea level. Could this be a factor?

I worry about the pressurization and the force while taking off. I amused my daughter to no end by holding by breath at the end of expiration in the belief that it might fill up my jugulars while we were taking off. "Breathe," she'd say, occasionally, and we'd laugh, we were having fun. I also visualized steel girders holding them veins open. ;)

It's interesting, though, you're right about most places that are doing the procedure being at sea level.

Pressurization aside, the recommendation to not go home for a few days was a good one, I definitely would not have been well enough on Sunday and it would've been questionable on Monday, even. Going to the museum was less of an outing that an airport journey would've been, but the museum did me in.

Today we were able to squeeze in a visit to the South Side seaport area, with the cobblestone streets and old buildings. From there we walked over to Wall Street, which was right there, and toured old Trinity church, and stood on the spot where George Washington took the oath of office. Then to the airport and home. Quite a big day, I am holding up well. :D
Last edited by Cece on Tue Feb 15, 2011 8:27 pm, edited 1 time in total.
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Postby HappyPoet » Tue Feb 15, 2011 8:05 pm

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Last edited by HappyPoet on Wed Feb 16, 2011 10:04 am, edited 1 time in total.
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Postby Cece » Tue Feb 15, 2011 8:09 pm

cheerleader wrote:Congrats, Cece. You've been working hard and have been a terrific advocate for others, as well as yourself.
You and Jeff presented almost identically---he had a 99% closure of the left IJV, and a 85% closure of the right, yet was mobile and walking with 20 brain lesions. Dr. Dake said the same thing....looking at his MRI and MRV, he was astounded that Jeff was not more disabled. He actually said, he wondered how he walked across the room. But Jeff's fatigue, cog fog, depression and heat intolerence were disabling him.

Cerebral disability does not always present in mobility issues. And I agree with COG..this is why we need neurologists and radiologists understanding how hypoperfusion can harm the brain. Jeff's fatigue wasn't "all in his head"...but it was all in his head. I know you understand now.

Continued hydration, rest, deep breathing and healthy eating. Enjoy the HDTV vision :)
hope and healing,
cheer

Thanks, Cheer, that means a lot to me. Isn't it interesting that he and I had similar presentations. Several of my relapses were altitude-related (transatlantic flight, hiking on Haleakala in HI, hiking again on Haleakala...), you've talked about this happening to him as well.

Frankly, the HDtv vision is too much for me, I am going to gather up anything psychedelic in the house and put it away for now. I'm sure I'll get used to it, and it's a very good thing, it's just so much.
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congratulations Cece

Postby hwebb » Wed Feb 16, 2011 1:31 am

Gee, take a few days off TIMS and look what happens!

Congrats Cece - welcome to the Liberation Club :)

I wish this club was not quite so exclusive!

Glad Dr S liked his gift book - thanks for spending time making it happen.

Wishing you continual improvements.

Helen
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Postby CenterOfGravity » Wed Feb 16, 2011 9:19 am

Hi Cece, about your vision, well I can only describe the opposite from the effects of optic neuritis so many times. For the most part I think my vision is fine, but sometimes, like after a hot shower, I can definitely notice the "dullness" of the reds especially, and even the blues and other colors don't have that richness. It seems to come back once I've cooled off. I don't see why getting your blood flowing wouldn't cause the opposite - you probably had just adjusted to what you were seeing.

Rest up, drink your water, take care of yourself, and enjoy the ride! And your egg cream! As a native New Yorker (no longer there though), I sure loved some chocolate egg creams as a kid!!

p.s. are you still accepting things to send to Dr. S?
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Postby Cece » Wed Feb 16, 2011 10:02 am

CenterOfGravity wrote:Hi Cece, about your vision, well I can only describe the opposite from the effects of optic neuritis so many times. For the most part I think my vision is fine, but sometimes, like after a hot shower, I can definitely notice the "dullness" of the reds especially, and even the blues and other colors don't have that richness. It seems to come back once I've cooled off. I don't see why getting your blood flowing wouldn't cause the opposite - you probably had just adjusted to what you were seeing.

yes - like that - I've had that too, back when I was 22 and had my optic neuritis first incident. I could close one eye and see red one shade, then close the other eye and it was a duller shade. Disturbing, but then it recovered. With this, it's the whole spectrum, it's nothing I've ever experienced before.

Unnaturally yellow flowers at the airport. My son's dull blue hat that I used to consider gray. The large picture on our wall of the Minneapolis skyline, with vibrant blues in the lake and the sky, who knew. The purple of my hairspray. The hunter-bright orange of my kids school card, that I use everyday. Everyone else not giving any of these objects a second thought.
Rest up, drink your water, take care of yourself, and enjoy the ride! And your egg cream! As a native New Yorker (no longer there though), I sure loved some chocolate egg creams as a kid!!

when tzootsi mentioned it a few pages back I thought it might be a truffle, not a drink, now I am looking forward to trying one.
p.s. are you still accepting things to send to Dr. S?

Yes - send a picture and a line or two of what you want to say to cece.ccsvi@gmail.com ! This will be sent as an addendum. You have plenty of time to get this in, I am a bit preoccupied at the moment. :)
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Re: congratulations Cece

Postby Cece » Wed Feb 16, 2011 10:07 am

hwebb wrote:Gee, take a few days off TIMS and look what happens!

Congrats Cece - welcome to the Liberation Club :)

I wish this club was not quite so exclusive!

Glad Dr S liked his gift book - thanks for spending time making it happen.

Wishing you continual improvements.

Helen

thanks Helen :D
it's the best club I ever joined.
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Postby Cece » Wed Feb 16, 2011 10:20 am

HappyPoet wrote:Cece,

SO HAPPY to finally hear from you!! :D
SO HAPPY you're home safe 'n sound. :D
SO HAPPY you're resting 'n not cleaning. :D
SO HAPPY the numbness has left your arm. :D

:D :D :D

I love this, HappyPoet, thank you. I am so happy to have friends to share this journey with.

The numbness is still gone. That was odd to experience, the retreat of it, especially when I wasn't thinking of it as bothersome numbness like it was a month ago.

I'm resting and not cleaning now, but I went and grabbed groceries this morning, and strained my neck lifting the bottled waters, and scared myself. Bottled waters are still in the car, it's a 24 pack of disposable ones (sorry, environment, just this once...), my kids and I are going to be carrying them in individually as we come and go.

Just found my discharge instructions this morning, those might've been useful to have handy a few days ago. Whoops.

I didn't feel the need to take tylenol this morning until after the bottled water incident, I still have residual soreness but nothing I can't ignore.

Really, really happy. Hugs, HappyPoet. What a long wait it had been for this and what good friends I had to spend the wait with.
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Postby Trish317 » Wed Feb 16, 2011 11:46 am

I'm also glad that you're home safe and sound. Now please stop trying to do so much. You've already earned the shirt with the big "W" on the front. lol!

Sending you lots of love and good thoughts.
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Postby Cece » Wed Feb 16, 2011 1:27 pm

Trish317 wrote:I'm also glad that you're home safe and sound. Now please stop trying to do so much. You've already earned the shirt with the big "W" on the front. lol!

Sending you lots of love and good thoughts.

thanks Trish :)
resting now, mostly, for 2 hours....
I wish this was more fair, I wish your DM had gotten (or gets in the future) these sorts of results.
My husband was awed this morning and I'm not even sure what by...he can tell I am better.

Back at the hotel yesterday, I walked into some furniture (this is not unusual) so I've got a bruise by my knee, not a bad one at all. I think the Arixtra makes bruising worse but not horrendously worse.
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hd vision

Postby 1eye » Wed Feb 16, 2011 1:34 pm

really hard to describe. it's like trying to imagine that you are another person, who sees the color orange as you see the color green. you can't do it. you have both agreed that it is the color orange. but the peculiar sensation you feel as orange is the same one i feel when i see green. but we have agreed on the word, so neither of us will ever know. now connect that realization with your new and old self as regards how you saw colo(u)r then and now. you can no more explain it to me than you could explain it to your old self. it would be nice, but i don't think you can. the best you can say is that you feel more, that it is better. let that be enough. it *is* like watching a new hdtv. or feeling good because you know the LED light source inside is costing you less and drawing a helluva lot less power. if you know why the contrast ratio is an order of magnitude better, more power to you. the important thing though, is, it is better, and you can tell it is a lot better. hope it stays that way. like hdtv, you get used to it, so relax. you will know if it becomes worse again. you will not need any explanation. if you don't know, it hasn't happened. i hope you remain ignorantly blissful.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby MS_HOPE » Wed Feb 16, 2011 2:40 pm

My husband walked by and said, "It's amazing. It's like a miracle cure."

First thing my dad said when he picked us up at the airport was, "You look better."


Cece, these statements brought a big smile to my face!! Sometimes it takes our loved ones to see the difference.

I'm SO glad for you, Cece, and hope that improvements keep piling up one on top of the other.

In the meantime, PLEASE take it easy!! Help your body heal itself.

Lecture over. Good intentions....

Liz

PS Would a pair of slightly tinted sunglasses help for awhile, till you acclimate to the newly vivid colors?
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Postby Donnchadh » Wed Feb 16, 2011 3:06 pm

Cece wrote:Back at the hotel yesterday, I walked into some furniture (this is not unusual) so I've got a bruise by my knee, not a bad one at all. I think the Arixtra makes bruising worse but not horrendously worse.


Cece,

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
Kitty says, "Take that, you stenosis!"

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Re: hd vision

Postby Cece » Wed Feb 16, 2011 4:49 pm

1eye wrote:really hard to describe. it's like trying to imagine that you are another person, who sees the color orange as you see the color green. you can't do it. you have both agreed that it is the color orange. but the peculiar sensation you feel as orange is the same one i feel when i see green. but we have agreed on the word, so neither of us will ever know. now connect that realization with your new and old self as regards how you saw colo(u)r then and now. you can no more explain it to me than you could explain it to your old self. it would be nice, but i don't think you can. the best you can say is that you feel more, that it is better. let that be enough. it *is* like watching a new hdtv. or feeling good because you know the LED light source inside is costing you less and drawing a helluva lot less power. if you know why the contrast ratio is an order of magnitude better, more power to you. the important thing though, is, it is better, and you can tell it is a lot better. hope it stays that way. like hdtv, you get used to it, so relax. you will know if it becomes worse again. you will not need any explanation. if you don't know, it hasn't happened. i hope you remain ignorantly blissful.

Let that be enough - but I'm a writer, 1eye! (I identify as a writer, anyway. Eight years ago I got exactly one novel published, by a small publisher, but then Publishers Weekly chose to review it, and not just clumped in the notes, but a review of its own, and not just a review but a red starred review (to denote "a book of outstanding quality.") Dazzling and enthralling, they called it, even though it is flawed, and I can do better and maybe will do better if time/energy/clarity of thought allows.) It is very hard, as a writer, to say that something is indescribable in words, the instinct is to keep trying. You've done a very good job, with the green and orange description, I get it from what you've said but I'm also experiencing it, it's describing the known to someone who knows it. I don't think I would've gotten it before the procedure. I'd heard the HD analogy and it wasn't until after the procedure that I knew this was what must be meant, and it was far more intense than I could have imagined.
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Postby Cece » Wed Feb 16, 2011 4:59 pm

MS_HOPE wrote:
My husband walked by and said, "It's amazing. It's like a miracle cure."

First thing my dad said when he picked us up at the airport was, "You look better."


Cece, these statements brought a big smile to my face!! Sometimes it takes our loved ones to see the difference.

I'm SO glad for you, Cece, and hope that improvements keep piling up one on top of the other.

In the meantime, PLEASE take it easy!! Help your body heal itself.

Lecture over. Good intentions....

Liz

PS Would a pair of slightly tinted sunglasses help for awhile, till you acclimate to the newly vivid colors?

Sunglasses - that is an idea, it might not be necessary anymore. I am acclimating some. Yesterday was particularly bizarre because I came home and it was disconcerting to have familiar objects be a significantly brighter shade than they used to be.

You all can give yourself some credit, I took it very easy from noon on today, in part because of the chorus of concern coming from here. ;)

I almost didn't post what my husband said; it is a bit verboten around here to actually use the phrase miracle cure, even when it feels like one.
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