Hi from Jeff, re. my stent treatment at Stanford

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

Postby Rokkit » Tue Nov 24, 2009 2:58 pm

Thank God everything's ok. It's pretty fitting that you guys still haven't stopped being pioneers. :-)
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Advertisement

Postby Needled » Tue Nov 24, 2009 3:05 pm

So glad you're back safe and sound and everything went well. :D
User avatar
Needled
Family Elder
 
Posts: 361
Joined: Wed Jan 14, 2009 4:00 pm
Location: Connecticut

From the Netherlands

Postby alphons » Tue Nov 24, 2009 3:24 pm

Hello Jeff and Joan,

I want to say hi. There are hundreds of people from the Netherlands which are following this thread, and because we all share the same moon, we all see Jeff as our Armstrong too :D Hope all goes well, good luck, and please keep us informed, we are all so exited and wishes you two all the best.

Thanks!!!

-Alphons.
User avatar
alphons
Newbie
 
Posts: 6
Joined: Tue Nov 10, 2009 4:00 pm
Location: Helmond, Netherlands

Postby bestadmom » Tue Nov 24, 2009 4:23 pm

Jeff and Joan,

I'm glad to hear everything went well. This is such a learning experience for all of us involved. Thank you again for "sticking your neck out" for the team.

Happy Thanksgiving. You've got so much to be thankful for, as do we all.

Michelle
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby Arcee » Tue Nov 24, 2009 4:45 pm

Jeff and Joan, so happy that you are back at home. Thank you again for all you do. This one got to me. Maybe you could stick on that holiday card with the picture of Jeff's corkscrewed collaterals :wink: ?

There are hundreds of people from the Netherlands which are following this thread, and because we all share the same moon, we all see Jeff as our Armstrong too
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

Postby Ruthless67 » Tue Nov 24, 2009 5:11 pm

This whole forum is awesome. I really feel the sharing, loving and compassion coming through. Alphons comments choked me up and that has happened to me over and over again as I read about our two steps forward, three back. Thanks to Jeff & Joan and thanks to all the rest of you also for being there for each other, no matter when the sun or moon are up on your side of the globe.
Hugs,
Lora
User avatar
Ruthless67
Family Elder
 
Posts: 422
Joined: Tue Oct 27, 2009 4:00 pm
Location: Montana, USA

Postby cheerleader » Tue Nov 24, 2009 6:28 pm

THanks, everyone! Home never looked so good.
Alphons...
Wonderful page about CCSVI in Dutch. Good work! Thanks for your comment about Jeff...that was poetic and very profound, and in English :)

Jeff and I love the Netherlands and he's been there many times to play and record with the Metropole Orchestra in Hilversum. The language there is "jazz" and everyone understands that!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5047
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby ozarkcanoer » Tue Nov 24, 2009 7:20 pm

Hi Jeff !! I just want to tell you that what you said in the documentary that "MS is like Chinese water torture". I have never heard it so aptly stated before. That is just what I feel... like I'm being tortured. It makes me feel better that someone else understands. Thank you.

ozark
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby javaneen » Wed Nov 25, 2009 7:43 am

Joan - I am so happy that you and Jeff are home safe. Thank you again for all you have done. Have a wonderful Thanksgiving! I know you will and Jeff will be Thanked at many thanksgiving tables tomorrow.
javaneen
User avatar
javaneen
Family Member
 
Posts: 85
Joined: Wed May 20, 2009 3:00 pm
Location: North Haven, CT

Postby cheerleader » Wed Nov 25, 2009 3:33 pm

Just getting some side dishes ready for the feast at my sister in law's tomorrow. Wanted to update. There is still a faint whoosh (he can hear only in complete silence) and really mild headache, but Jeff says his energy and spirits are great. He didn't have a left jugular before, and now he does, so stuff has changed in his circulatory system. And Dr. Dake says his stents look perfect...he just has a weird left jug, but it's functioning now. He's outside chopping firewood with Henry now.

I asked him (when he was getting prepped to go for his 3rd endovascular procedure earlier this week) whether he regretted doing this procedure...and he gave me a big no. He is so happy to be energized and alive again, and has no regrets.

We've been answering hundreds of e-mails from around the world this week, mostly from Canada...and it's been a huge honor. People are sharing their lives, hopes, trials and dealings with MS. We feel so fortunate to be able to listen, offer some encouragement and maybe direction. We don't know if this is "the" answer to MS, but we do know there is a connection. We want to help get the fundraising going for more research, and are committed to doing that we when get back in southern California.
Happy Thanksgiving, everyone. We appreciate you all so much-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5047
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby cheerleader » Wed Nov 25, 2009 3:59 pm

Oh yeah, and check out Jeff's beautiful score to the new Hallmark Hall of Fame movie on this Sunday, Nov. 29, 9pm EST on CBS-
"A Dog Named Christmas"
http://www.variety.com/review/VE1117941 ... id=32&cs=1
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5047
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Aperture » Wed Nov 25, 2009 4:24 pm

I asked him (when he was getting prepped to go for his 3rd endovascular procedure earlier this week) whether he regretted doing this procedure...and he gave me a big no. He is so happy to be energized and alive again, and has no regrets.


Thank you so much for asking him this and then posting. This exactly what I was wondering after reading his experience so far. It seems as though even if there are some side effects to this procedure, they a far better than the MS.

Very encouraging, thanks for being so open to all of us. Thanks to Jeff for taking the first step and going for this, you have opened a new door for many (myself included) to walk through and get a new outlook on life.

Best,
Aperture
User avatar
Aperture
Newbie
 
Posts: 4
Joined: Tue Nov 24, 2009 4:00 pm
Location: Las Vegas, Nevada

Postby magoo » Wed Nov 25, 2009 7:07 pm

I hope you have a happy Thanksgiving! I am so happy Jeff is feeling better. I think he is ultra brave!
Thanks for all you do for us :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby Terry » Wed Nov 25, 2009 7:14 pm

Oh yeah, and check out Jeff's beautiful score to the new Hallmark Hall of Fame movie on this Sunday, Nov. 29, 9pm EST on CBS-


Now THAT"S fun!!!
I'll be at my TV.
User avatar
Terry
Family Elder
 
Posts: 500
Joined: Fri Oct 26, 2007 3:00 pm

I want to give my Thanksgiving Speech

Postby Ruthless67 » Wed Nov 25, 2009 10:28 pm

Thank you Jeff! I am so glad that you are willing to share you very personal journey with the world. What a wonderful early X-Mas gift you have given us. As we peek over your shoulder, and the other 50 or so Liberated folks, we watch your post-op experiences and appreciate knowing it all, straight up, the good and the bad. We thank you again for your pioneering spirit and commitment to helping in this ongoing research.

Thank you Joan for all your hard work and research and bless you for sharing it with all of us. You have done so much for so many; this must be close to overwhelming when it comes to you having personal time, cause I’m thinking this is becoming a fulltime job for you!

Hugs,

Lora
User avatar
Ruthless67
Family Elder
 
Posts: 422
Joined: Tue Oct 27, 2009 4:00 pm
Location: Montana, USA

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