SammyJo goes to Stanford

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

SammyJo goes to Stanford

Postby SammyJo » Mon Nov 02, 2009 7:53 pm

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.
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Postby cheerleader » Mon Nov 02, 2009 8:14 pm

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,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby CRHInv » Mon Nov 02, 2009 9:37 pm

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.
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Postby Sharon » Mon Nov 02, 2009 9:45 pm


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,
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Postby LR1234 » Tue Nov 03, 2009 1:44 am

Thats great news Sammy:) I also pray for you to reap the benefits of the procedure, fingers crossed.
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Postby Needled » Tue Nov 03, 2009 6:20 am

SammyJo, All my best for a smooth recovery. Congrats!!
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Postby Shannon » Tue Nov 03, 2009 6:36 am

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!
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Postby Loobie » Tue Nov 03, 2009 8:26 am

Awesome SJ! Glad everything went well.
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Postby radeck » Tue Nov 03, 2009 10:09 am

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.
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Postby Arcee » Tue Nov 03, 2009 10:40 am

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
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Postby magoo » Tue Nov 03, 2009 11:29 am

Congrats and take it easy! I hope your results will be amazing!!
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.
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Postby bestadmom » Tue Nov 03, 2009 11:31 am

Congrats, you sound great - upbeat and strong.
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Postby ozarkcanoer » Tue Nov 03, 2009 11:33 am

: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.
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Postby mrhodes40 » Tue Nov 03, 2009 5:44 pm

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... This is my regimen thread Read my book published by McFarland Health topics
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Postby skydog » Tue Nov 03, 2009 9:33 pm

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
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