At Stanford

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

Postby notasperfectasyou » Tue May 19, 2009 7:16 am

It's sort of odd to congratulate someone for needing surgery, but we here all "get it". Congtatulations Marie! It's an amazing thing to pursue a line of reasoning and find that your suspisions are true. The key for me will be to see how you improve over the next few months. Your spirit reminds me of what it must have been like to be Christopher Columbus. Thank you for blazing this path. Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Advertisement

Postby robbie » Tue May 19, 2009 7:18 am

she gets tested on the 1 of June and then her op on the 2nd where I will be tested on the 2nd and op on the 3rd.

To get your operation the day after your tests is great, here in Canada it would probably be months. When these narrowing in the jugulars or where ever are found what causes them, I realize some could be from birth but they can’t all be. Is it bad cholesterol?
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby cheerleader » Tue May 19, 2009 8:06 am

Robbie...
Actually, the docs think it may very well be congenital. Cholesterol can cause vein clotting, but not stenosis. These aren't clots, but narrow veins. Living a healthy lifestyle can help keep veins open-

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby peekaboo » Tue May 19, 2009 6:38 pm

i am pacing in my wheelchair...the suspense is driving me crazy...i hope i can stay up to hear the news. H
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby cheerleader » Tue May 19, 2009 6:53 pm

Holly...
I'm on pins and needles, too....but we may not hear tonight. Marie's probably whipped, and sleeping in recovery. Her computer is back at the hotel. I left a message on her cell...but not sure Bill (her husband) will return it. I say, if it gets too late, go to sleep, and know that she is being looked after.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Marie doing well!

Postby MariesSister » Tue May 19, 2009 7:45 pm

Hi everyone!
I am Terry, Marie's sister, and she asked me to come post a little about what is going on. She is resting comfortably at the hospital, they are keeping her for the night. She had duel stents put in, and the pressure in the blood vessel (on the brain-side) went from 13 in one vein and 5 in the other to 2 and 1 after the stents were put in (don't ask me the scale, cuz I am not sure). She has a headache, and is nauseous, but is crunching her dinner in my ear as I write, so I think she is going to be okay!... it has been a loooong day!
Bill has had the hotel move them down to a first floor room, to make it easier for her to get into the room after she is released tomorrow. Marie says she already has some sensation of having a clearer head - but that she will know more once she is taking less drugs.
I will try to post each time I talk to her to keep y'all up on the news :)
Terry
User avatar
MariesSister
Newbie
 
Posts: 2
Joined: Mon May 18, 2009 3:00 pm

Postby Artifishual » Tue May 19, 2009 8:03 pm

Great news !! thanks for posting!! tell her to get some rest :D :D
Artifishual
Family Elder
 
Posts: 646
Joined: Sun Mar 09, 2008 4:00 pm

Postby Loobie » Wed May 20, 2009 4:01 am

Glad to hear she's ok. Can't wait until some time has passed for her.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby SarahLonglands » Wed May 20, 2009 4:47 am

Terry, please give Marie my very best wishes and tell her that I have now uncrossed my fingers and toes since she is well enough to crunch her dinner. (It makes it easier to pant!)

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2110
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Needled » Wed May 20, 2009 5:56 am

Great news!! We can all breathe a little easier now. What a wonderful way to start the day. Thanks for the update and please keep them coming if you have time.
N
User avatar
Needled
Family Elder
 
Posts: 361
Joined: Wed Jan 14, 2009 4:00 pm
Location: Connecticut

Postby Sharon » Wed May 20, 2009 6:12 am

Wipee! Terry, thank you for taking over for Marie and posting. It is a relief to know that she is doing okay. My gosh, she had quite a decrease in pressure after the stents were put in - no wonder she had a headache.

BTW, Welcome to the forum Terry!

Sharon

P.S. Anecdote - good to see you on here
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby LR1234 » Wed May 20, 2009 7:41 am

I am glad Marie is through the hard part, hopefully now the healing can begin....

One quick question (not trying to hijack Marie's post) but I have never had headaches before and the dr I went to see regarding CCSVI was saying if I had never experienced headaches it is highly unlikely to find any stenosis/blockages.....any thoughts?
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby peekaboo » Wed May 20, 2009 7:57 am

Good morning all - Thanks Terry for letting us all know how Marie is,,,she has quite a fan base here on thisisms

LR - I wouldn't rule out CCSVI if you don't get headaches - I don't normally have them either but I have a thick head feeling...i believe marie said cotton ball head...Does this fit you? Regardless, the mrv is non intrusive and you will know for sure if you have stenosis or not.
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby cheerleader » Wed May 20, 2009 8:30 am

Talked with Marie last night from her hospital room. Hopefully she'll be released this morning and heading back to the hotel. She sounded terrific (for someone on a bunch of meds who had just had two stents put in her neck!) and very upbeat. Her speaking voice is like her writing voice...funny, sweet and really smart. Boy, do I admire her.

Her computer's down for the count, so don't worry if she doesn't post. She may get to the hotel computer, we'll see. I'll let her tell her own adventure tale, but wanted all to know she's on the mend. Thanks to her sis Terry, for telling her I'd called! It was great to finally "meet" my friend.

Sharon, everyone is going to be different...it depends on the blockage, but also how your body deals with collateral drainage. Jeff's was shooting back into his brain (why he'd get vascular headaches), Marie's had a journey into her vertebral veins. It's impossible to know your "story" until you see your vein situation. Yours will be unique. Which is why it's so crazy that the first 2 had the same blockage! More stories to come...
And Sarah...I know you meant it's easier to "paint" now! Although I was doing some serious panting yesterday, too :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby SarahLonglands » Wed May 20, 2009 9:37 am

Oops, well, I won't change it! I am trying to learn to touch type but not awfully well. Its good that so many people are are finding so much improvement with stents or antibiotics or whatever.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2110
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service