Peeks follow up

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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peekaboo
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Peeks follow up

Post by peekaboo » 9 years ago

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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Post by Jamie » 9 years ago

good luck!

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catfreak
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Post by catfreak » 9 years ago

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.

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zap
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Re: Peeks follow up

Post by zap » 9 years ago

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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Post by CureIous » 9 years ago

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

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Re: Peeks follow up

Post by cheerleader » 9 years ago

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

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Post by Loobie » 9 years ago

Hooty Hoo!

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catfreak
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Post by catfreak » 9 years ago

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.

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Sharon
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Post by Sharon » 9 years ago

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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Post by LR1234 » 9 years ago

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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Post by Sharon » 9 years ago

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

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Loobie
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Post by Loobie » 9 years ago

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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Post by jimmylegs » 9 years ago

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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Post by peekaboo » 9 years ago

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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Post by cheerleader » 9 years ago

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

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