Peeks follow up

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

Peeks follow up

Postby peekaboo » Thu Aug 13, 2009 6:45 pm

got my follow up MRI/MRV's and consult w/Dr D. My stents are looking great but....I am going in surgery for 2 new stents Jugular at ea. collar bone. Dake said I will be able to go home afterward if I felt OK to do so.

He was totally enthusiastic and excited about it all. Took a short survey re: fatigue and tasks also an EDSS self assessment. tell more tomorrow. H.
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Advertisement

Postby Jamie » Thu Aug 13, 2009 6:57 pm

good luck!
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby catfreak » Thu Aug 13, 2009 7:07 pm

Hi Holly,

I was wondering about you and how everything went today. Glad to here from you. I go for my Tysabri tomorrow and I will keep you in my thoughts!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 2:00 pm
Location: Mississippi

Re: Peeks follow up

Postby zap » Thu Aug 13, 2009 8:12 pm

peekaboo wrote:got my follow up MRI/MRV's and consult w/Dr D. My stents are looking great but....I am going in surgery for 2 new stents Jugular at ea. collar bone.


Were those stenoses visible the first time - or could they have formed since they original spots were repaired?
User avatar
zap
Family Elder
 
Posts: 326
Joined: Mon Apr 20, 2009 2:00 pm

Postby CureIous » Thu Aug 13, 2009 8:35 pm

Oh my gosh peek another round of stents!? Phew! Did you go to Stanford for the scans or getting scheduled this week?

:) Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1210
Joined: Tue Jul 14, 2009 2:00 pm
Location: Riverside, CA

Re: Peeks follow up

Postby cheerleader » Thu Aug 13, 2009 9:43 pm

peekaboo wrote:got my follow up MRI/MRV's and consult w/Dr D. My stents are looking great but....I am going in surgery for 2 new stents Jugular at ea. collar bone. Dake said I will be able to go home afterward if I felt OK to do so.

He was totally enthusiastic and excited about it all. Took a short survey re: fatigue and tasks also an EDSS self assessment. tell more tomorrow. H.


Hi Holly...
sounds like he's learning more about the stenosis of the jugulars in the collarbone area as opposed to the higher blockage he's seen in patients like Jeff and Mel... and is using less invasive, smaller stents there. Will be thinking of you, hope all is smooth sailing.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Loobie » Fri Aug 14, 2009 4:16 am

Hooty Hoo!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby catfreak » Fri Aug 14, 2009 9:15 pm

Hey Holly,

How are you today? Did it all go good? What did Dake do?

Looking forward to hearing your report.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 2:00 pm
Location: Mississippi

Postby Sharon » Sat Aug 15, 2009 6:41 am

Holly - Hope you are doing well. Two more stents - WOW! Dake said he was not as aggressive as maybe he should have been the first time around. It is nice to see that he is changing and modifying his treatment as time has gone along this summer.

Take care, and have safe travels home.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby LR1234 » Sat Aug 15, 2009 6:43 am

Good Luck Holly! 2 more stents...I must admit I am nervous for you as having stents placed in your veins is not always complication free but I hope for your sake you get some relief from the procedure and that your progression stops (or even better you start to improve)
LR1234
Family Elder
 
Posts: 1505
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby Sharon » Sat Aug 15, 2009 6:47 am

Cheer you wrote
sounds like he's learning more about the stenosis of the jugulars in the collarbone area as opposed to the higher blockage he's seen in patients like Jeff and Mel... and is using less invasive, smaller stents there


My understanding from Dake is he is using the smaller stents everywhere. He said that when he first started (Jeff, Marie, me, Holly, Lew) he was using the larger, thinking bigger was better. But, then switched to the smaller expanding stent - less invasive therefore maybe less pain. The smaller stent still expands to the size he needs for a good flow.

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Postby Loobie » Sat Aug 15, 2009 8:44 am

Sharon wrote:Dake said he was not as aggressive as maybe he should have been the first time around. It is nice to see that he is changing and modifying his treatment as time has gone along this summer.Sharon


I searched and searched Youtube for the clip in "Little Big Man", one of my all time favorite movies, for a clip where Grandfather says "my heart soars like a hawk", but I couldn't find it. This makes my heart soar like a hawk!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby jimmylegs » Sat Aug 15, 2009 9:05 am

gawd i'm easily distracted. just spent 10 minutes fruitlessly googling...
i'm going to have to turn off my wireless radio if i ever want to finish this stupid paper.
jimmylegs
Volunteer Moderator
 
Posts: 9102
Joined: Sat Mar 11, 2006 3:00 pm

Postby peekaboo » Sat Aug 15, 2009 10:12 am

One day post surgery. Dr D performed two CCSVI surgeries yesterday. The earlier is a friend of a TIMS member. After the consult of collar bone placement once the op began he placed my rt. jug stent in the middle of hte jug and the lt jug new stent was placed below or maybe overlap like Sharons.

My recovery was not remarkable. Sore neck afraid to turn it but by the end of the night I loosed up and could look both ways freely, I got back to my sisters place by 8:00pm . Today I even feel better and will go to a farmers market and to a remote bay view park. Of course riding/pushed in a wheelchair.

tootles and once back home I can embellish further. Hugs H
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona

Postby cheerleader » Sat Aug 15, 2009 10:21 am

peekaboo wrote:One day post surgery. Dr D performed two CCSVI surgeries yesterday. The earlier is a friend of a TIMS member. After the consult of collar bone placement once the op began he placed my rt. jug stent in the middle of hte jug and the lt jug new stent was placed below or maybe overlap like Sharons.

My recovery was not remarkable. Sore neck afraid to turn it but by the end of the night I loosed up and could look both ways freely, I got back to my sisters place by 8:00pm . Today I even feel better and will go to a farmers market and to a remote bay view park. Of course riding/pushed in a wheelchair.

tootles and once back home I can embellish further. Hugs H


SO glad to hear from you, Holly. New rt. jug stent in middle of jug, and new left jug stent is lower, correct? Glad the neck is moving freely today. Wow. Have fun at the farmers' market. Hope the smoke's not to bad from the Santa Cruz fire. We're indoors today with smoke from the Yuba fire. Keep us posted!!!!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5075
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Next

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