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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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peekaboo
 Post subject: Peeks follow up
PostPosted: Thu Aug 13, 2009 7:45 pm 
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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.
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Jamie
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PostPosted: Thu Aug 13, 2009 7:57 pm 
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good luck!
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catfreak
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PostPosted: Thu Aug 13, 2009 8:07 pm 
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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

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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.
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zap
 Post subject: Re: Peeks follow up
PostPosted: Thu Aug 13, 2009 9:12 pm 
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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?
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CureIous
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PostPosted: Thu Aug 13, 2009 9:35 pm 
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Oh my gosh peek another round of stents!? Phew! Did you go to Stanford for the scans or getting scheduled this week?

:) Mark

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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
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cheerleader
 Post subject: Re: Peeks follow up
PostPosted: Thu Aug 13, 2009 10:43 pm 
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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

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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Loobie
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PostPosted: Fri Aug 14, 2009 5:16 am 
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Hooty Hoo!

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catfreak
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PostPosted: Fri Aug 14, 2009 10:15 pm 
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Hey Holly,

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

Looking forward to hearing your report.

Cat

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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.
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Sharon
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PostPosted: Sat Aug 15, 2009 7:41 am 
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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
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LR1234
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PostPosted: Sat Aug 15, 2009 7:43 am 
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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)
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Sharon
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PostPosted: Sat Aug 15, 2009 7:47 am 
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Cheer you wrote
Quote:
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
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Loobie
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PostPosted: Sat Aug 15, 2009 9:44 am 
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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!

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jimmylegs
 Post subject:
PostPosted: Sat Aug 15, 2009 10:05 am 
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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.
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peekaboo
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PostPosted: Sat Aug 15, 2009 11:12 am 
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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
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cheerleader
 Post subject:
PostPosted: Sat Aug 15, 2009 11:21 am 
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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
dual stents placed 5/09
CCSVI in MS


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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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