SammyJo goes to Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
SammyJo
Family Elder
Posts: 225
Joined: Wed Mar 10, 2004 3:00 pm
Contact:

SammyJo goes to Stanford

Post by SammyJo »

10/29/09 My husband said Dr. Dake came out to the waiting room after my 2.5 hour procedure and gave an enthusiastic run down, on what I gathered from the corner of my eye was a flawless installation of 3 stents & 1 angioplasty. Both jugulars a mess, but azygos OK. Flew back to Seattle Sun. and I'm recovering well, but muscles still weak. Neck pain initially severe, a few headaches, but now manageable, just using Tylenol, percocet made me sick.

Will post tracking log once I get doctors notes, so I can be accurate, and I've got great pictures. I will add tips for future stenters to this thread. Thankyou to this amazing CCSVI community, having so much info up front helped me visualize a perfect outcome at Stanford, a happy ending to 15 years of suffering.
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

SammyJo-
Jeff and I wish you nothing but healing days ahead. You have worked so hard for so many with MS, and our prayers for you now are that you will reap the benefits of this procedure. Jeff couldn't handle percocet either, and the prescription strength tylenol knocked the pain back. Remember the 2 steps ahead, 1 back rule. Give your body time to heal and your brain time to readjust to new fluid levels. Drink plenty of liquids, get plenty of rest. Please keep us posted as you are able-
all best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
CRHInv
Family Elder
Posts: 403
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ
Contact:

Post by CRHInv »

Yeah for "flawless installation"!! Rest up and take care of yourself. I can't wait to hear more details.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
Sharon
Family Elder
Posts: 1283
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

SammyJo-

So glad you are back home and resting. Three stents and one angioplasty--you once again are a pioneer in the story of MS. Take care of yourself in the next few days --- this is not necessarily an easy recovery. Take the time you need to heal.

I ditto Cheer's remarks - you have worked so hard for those who have suffered with MS. You have an amazing network of LDN followers (doctors and patients) who are going to be following your recovery --- you will spread the word about CCSVI ---- maybe next year at the LDN conference?

Take Care,
Sharon
LR1234
Family Elder
Posts: 1517
Joined: Wed Feb 11, 2009 3:00 pm
Location: California
Contact:

Post by LR1234 »

Thats great news Sammy:) I also pray for you to reap the benefits of the procedure, fingers crossed.
User avatar
Needled
Family Elder
Posts: 361
Joined: Wed Jan 14, 2009 3:00 pm
Location: Connecticut
Contact:

Post by Needled »

SammyJo, All my best for a smooth recovery. Congrats!!
Shannon
Family Elder
Posts: 148
Joined: Mon Sep 28, 2009 2:00 pm

Post by Shannon »

Very excited for you! Seems like a miracle. Tears in my eyes about "15 yrs. of suffering." That's how long it's been for me, too. I am still waiting for the insurance company to approve. Thank you for being here. :) Rest well!
User avatar
Loobie
Family Elder
Posts: 2198
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA
Contact:

Post by Loobie »

Awesome SJ! Glad everything went well.
radeck
Family Elder
Posts: 398
Joined: Mon Feb 16, 2009 3:00 pm
Contact:

Post by radeck »

Again, congrats that everything went so smoothly. I'm thinking of you several times a day hoping that you won't have post procedure complications and continue to do great.
User avatar
Arcee
Family Elder
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA
Contact:

Post by Arcee »

And another voice chiming in to say congratulations and wish you an easy recovery. Looking forward to hearing more about your experience, and so glad you are part of the CCSVI crew.
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
magoo
Family Elder
Posts: 574
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC
Contact:

Post by magoo »

Congrats and take it easy! I hope your results will be amazing!!
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
bestadmom
Family Elder
Posts: 722
Joined: Mon May 18, 2009 2:00 pm
Location: CT
Contact:

Post by bestadmom »

Congrats, you sound great - upbeat and strong.
User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer »

:D :D SammyJo... I am very excited for you and hope with all my heart that your recovery will be fast and your MS symptom be eased.
User avatar
mrhodes40
Family Elder
Posts: 2068
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA
Contact:

Post by mrhodes40 »

Yay SammyJo! Newest stent-o-teer! I am so glad you had the chance to see Dr Dake and get the evaluation. The neck pain is terrible in the beginning for sure you'll feel better soon! I wish you so very well, congratulatins!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
skydog
Family Elder
Posts: 306
Joined: Tue Feb 24, 2009 3:00 pm
Location: North Oregon Coast

Post by skydog »

Hello Marie, Looks like I will be heading down to Stanford next week for testing/treatment on the 12/13th. For some reason I feel a little apprehensive this time around. I guess from the poor out come of the first round. You know still not knowing why the stenosis formed where there were no apparent problems before has me concerned. It is my hope that Dr. Dake has some answers for me. Personally the cpn/bugs and not being able to get the INR to therapeutic level are the jest of my worries. Not sure if there being even considered as possible interference of the healing after our procedures. Still clinging on to my good health but there sure has been a cascade of new MS symptoms and the worsening of the old ones to contend with. Mainly just wanted to say Hello! Hope your enjoying this great fall weather. Cheers, Mark Meant for this to go as a PM to marie but since I am here, Wishing you the best recovery possible Samyjo Peace and health to you, Mark
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”