Cece's turn

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

Re: Cece's turn

Postby Cece » Fri Sep 09, 2011 10:44 am

Thanks, blossom. How have things been for you?

Dr. Cumming and I had an excellent talk, with much to think about, and as for my jugulars, they look great. If I had experienced a loss of improvements, he wouldn't care what the ultrasound said, because it's not a perfect tool, but my new improvements since my second procedure are holding steady, as are my earlier improvements.
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Re: Cece's turn

Postby HappyPoet » Fri Sep 09, 2011 11:34 am

Congrats, Cece
Super happy for you! :-D
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Re: Cece's turn

Postby newlywed4ever » Fri Sep 09, 2011 6:55 pm

So VERY happy to hear this, Cece!
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Re: Cece's turn

Postby Kathryn333 » Fri Sep 09, 2011 7:03 pm

Hi, Cece. I'm so happy to read your good news. Congratulations. :smile:

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Re:

Postby 1eye » Fri Sep 09, 2011 8:15 pm

NZer1 wrote:Another great read is The Brain that Changes Itself by Norman Doidge, MD


I also highly recommend this book. It gives hope where none was before.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Cece's turn

Postby ErikaSlovakia » Sat Sep 10, 2011 3:21 am

Congratulations, Cece :smile:
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Re:

Postby Cece » Sat Sep 10, 2011 8:20 am

1eye wrote:
NZer1 wrote:Another great read is The Brain that Changes Itself by Norman Doidge, MD


I also highly recommend this book. It gives hope where none was before.

I will read it, thanks NZer1 and 1eye for the rec.

I want to focus on diet and exercise for the next few months, to see if I can achieve any health improvements that way.

Some notes from our recent vacation:

I perceive Cinderella's castle as a much brighter shade of blue now, which changes the look entirely.

I am more comfortable with brighter manmade objects than brighter nature. When the sky, grass, and flowers are brighter than I've ever seen before, it is unsettling. There is no way to think, "They are making brighter cars/clothes/billboards these last six months, bright must be very in," when it's the blueness of the sky that is unnaturally saturated.

At the end of a long theme park day, I had been sweating and the sweat had dried and swimming sounded great. Previously, I wasn't sweating like that, I had no need to go swimming, and what I wanted was for my husband to keep the kids out of the room for two hours so I could lie flat and half-recover. There was none of that this trip. He never got kicked out of the room with three kids when he was tired too. In the evenings, we went swimming or we went to Downtown Disney.

My appetite is better. Previously I'd feel nauseous but force myself to eat because I always felt better after eating (but I couldn't eat too much, or that might make me instantly fatigued and unable to go on). Now, I just eat, I'm hungry, I enjoy it, life is good.

Jeff was excited about the changes in me, "It's the first Disney trip since you've been healed, though I know we can't say healed, but you are healed." Healed is not quite the right word because I still have MS symptoms, but the change is significant.

This was our third trip in which I got a GAC (guest assistance card) at guest services. If we go in a cooler season next time, I don't think I'll need that GAC. This was not true before. Two years ago, on a previous trip, we'd arrived at Magic Kingdom, taken the train to ToonTown, and stood in line for Goofy's Barnstormer. The line is in the sun, it was too hot, and I was in terrible shape by the time I got through that one line. Back on the train to the front of the park, the kids and my husband met characters while I took the time to sob in the bathroom and then went to guest relations to ask for the GAC. A GAC is incredibly useful and not a big deal unless you are like me and taking it as a defeat. (GACs have different stamps, mine always has an arrow on it to use alternate entrances, which can mean being sent through the fast pass line instead of the regular line. It is for people with hidden disabilities. Another thing I didn't know originally at Disney World is that you can go to First Aid, where they have cubicles with cots where you could lie flat in the air conditioning to recover, and then get back to your day. I haven't done this but it sounds nice.)

We did not rent a car but made the mistake of using the Disney buses. The problem is that you are not guaranteed a seat. I learned that I am incapable of standing for the duration of the trip. People are nice and as soon as it showed that I was having difficulty, I was offered a seat. It is hard to watch other people standing with no issues. On our last bus, there was a woman my age and her young daughter who stood even though there were seats available. The wait for the bus was also in direct sun, so I was weakened before I ever got on, and that was also why waiting for the next bus that might have seats available was a good option in the evening but not the morning. We adjusted by walking through our resort to the next resort that has better chances of getting seats (since the buses went there first and then went to our resort already half-full). I gave myself the out that if the bus was full or the line was long meaning we'd have to wait for a second bus in the sun, we could take a taxi. We found ourselves in that situation just once, it cost $20, and it was well worth it.

This is interesting, we had enough frequent flyer miles for five free tickets, but they were on two different airlines. My husband took our youngest on American Airlines, while I took our two elementary-aged children on Southwest airlines. There is no way I would have trusted myself to fly alone with the kids like that prior to my procedure. Even if 90% of the time I'd be somewhat well and functioning, there is that 10% when I could not have trusted myself to be safe and cognitively-together enough to take care of myself, let alone them. The stress of flying with kids could do me in right from the beginning! And if I get that overly fatigued and in MS-pain, it feels like it's doing damage; I do not want to be there. But since the procedure, it hasn't been like that, and I felt like I could take the kids on my own, and in fact was able to do so without problem. Even when we got to the resort the first day, I was able to walk around with them and explore rather than the usual lying down and not being able to recover until not the next morning but the morning after that. (We'd go out and do things the next day, but it wouldn't be until another day into the trip that I'd feel recovered from the travel.)

In the week since we've been back, my husband keeps commenting on how well I'm holding up despite how much I've done and am doing. I caught a cold, too, and that alone would do me in before. Next week I'll finally get a break, and I need it, but if my life can be split into "before" and "after" my CCSVI procedures, I am definitely in the "after" and it is good.
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Re: Cece's turn

Postby Cece » Sat Sep 10, 2011 4:41 pm

http://medicaltips.biz/2011/09/02/multi ... treatment/

It's lines like this
If she could even just regain use of her hands…..

that twist the heart. We all need our hands, even if we do not all have them. Here's hoping for a good outcome for this lady, and for all of us.
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Re: Cece's turn

Postby Cece » Sat Oct 01, 2011 4:33 pm

Update:
over 7 months since my right jugular was treated...
over 2 months since my left jugular was retreated...

I am doing well. :)

I've noticed a few more improvements since August:

* My balance improved after the first procedure and it's even better now.

* I figured out what I've been saying as "things look more real" is at least in part due to improved depth perception. It's noticeable when I'm driving too.

* Not only am I sweating, which was new last spring, but I am able to sweat profusely, which was new at the end of August.

* One of the ways I discovered I could sweat profusely was by doing a Jillian Michaels cardio kickboxing exercise DVD. I had never been able to get past halfway on it before, with great difficulty. Now I can finish it, without great difficulty, but I sweat profusely the entire time. I've done it three times since I found out that I could.

The trees are changing colors here and I've never seen anything like it before. There are a few trees that look about right to me (dull red, dull yellow) and then there are these bright unnatural look-at-me trees.

The numbness is still gone from my left arm. After the first procedure, it stayed gone for 6 weeks. This time, it's been gone for 11 weeks so far.

I don't know if my cogfog is as gone as it was in the months of July and August. It's been a slog of a month though with other things in my life so perhaps it's temporary or perhaps it's coming back.

I still have fatigue as defined by normal person standards but nothing like the fatigue as defined by my own pre-procedure standards.

I inclined my bed again this week and I feel better during the days now. If inclined bed still helps me, that would seem to be an indication that my CCSVI is not 100% better. Also I hadn't felt like I needed to incline it until earlier this month.

My ability to hear music as music is still with me. And it is still really hard to explain. This week I downloaded some MP3s from Amazon, which is unusual for me. "Brown-Eyed Girl," anyone?

I am more able to watch t.v. in the evening with my husband after the kids are asleep. It used to be that the tv was too over-stimulating and it would hurt. I would also get very tired mentally by the end of an movie. But now I can't remember the last time I was tired out by a movie.

Instead of my husband taking the kids out on the weekend so I could rest, I'm going out with them. Last weekend we went to a corn maze. Tomorrow we're going hiking. A few weekends ago we went to the zoo and they got to play in the water jets for the last time before winter. It's nice.

For me the procedure has been a real success.
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Re: Cece's turn

Postby cheerleader » Sat Oct 01, 2011 6:58 pm

Cece- really glad to read about your continued healing. It's encouraging to hear your progress. I'm happy for you and for your family...it sounds like they've "got you back." What a gift. You and Jeff share many improvements-
1. increased ability to sweat. This is still true for Jeff, and he loves it. The heat no longer exhausts him.
2. ability to stay up later, watch TV or a movie, have conversations with friends, read, etc... and not fall asleep
3. ability to do stuff with us as a family...whether a hike, bike ride, dinner out...he can hang with us all. He used to stay home.
4. reduced fatigue
His eyesight was already bad, and has not changed much. I'd hoped it would improve, but at least it isn't any worse. He is still color blind, and has no peripheral vision, but that's been gone for 30 years. The earlier, the better, for intervention. And diet and exercise really can make a huge difference. May you have continued healing and hope!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Cece's turn

Postby David1949 » Sat Oct 01, 2011 8:25 pm

Congratulations Cece. I wish you continued success.
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Re: Cece's turn

Postby ErikaSlovakia » Sat Oct 01, 2011 11:54 pm

Congratulations Cece!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Cece's turn

Postby MaggieMae » Sun Oct 02, 2011 7:16 am

So happy for you Cece and may your improvements continue.
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Re: Cece's turn

Postby erinc14 » Sun Oct 02, 2011 7:38 am

this gives me hope for better . it's been 7 months for me too .
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Re: Cece's turn

Postby 1eye » Sun Oct 02, 2011 2:27 pm

I think once you have any improvement, it's a sign that there could be more waiting in the wings. So it's up to you to do your homework and follow the program, fix your diet, get exercise, and stay positive. Whatever options you have, you owe yourself to take them as best you can. Go, Cece.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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