ONE YEAR CHECK UP=ALL GOOD!

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

ONE YEAR CHECK UP=ALL GOOD!

Postby Rose2 » Sun Oct 17, 2010 9:17 pm

Hi All!
Want to check in and report.
I had my One Year MRI/MRV and appointment with Dr. Dake at Stanford. Rokkit, I missed you on the same day? :(
My high jugular stent and my Azygos stent are just fine. Flow is fine.
Valve that was Angio'd is fine.
AND NO NEW LESIONS.!!! but i already knew that because in this last year i have not had one hint of MS. So, if inflammation causes these sympotoms, then I knew I had no inflammation. NO SYMPTOMS.
And there is one old large lesion that was more difficult to see than the prior MRI. Like disappearing hard to see! yep.
Dr. Dakes's NP,Stacy, said my score of 84 on the EDSS scale was 100% improvement and amazing. I scored 0.0 on everything now and totaled 6.5 preLiberation.
Shoulder is all better. I take one baby aspirin per day, also.
I really don't miss the Avonex, Baclofen, etc. etc. etc. etc. etc. etc.
I used to have MS.
I pray for everyone who wants to be scanned and treated to have the same blessing.
I call myself The Lucky Duck.
Sincerely, Rose 2 :)
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Postby PCakes » Sun Oct 17, 2010 9:35 pm

Wow! a 'rose' by any other name is a 'duck' ?? :lol: Congratulations !! Today is a very good day!

If it's okay with you, I will add your story to ... http://www.thisisms.com/ftopic-11976-15.html
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Postby Rose2 » Sun Oct 17, 2010 9:56 pm

PLEASE ADD ME!
rOSE2
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Postby PCakes » Sun Oct 17, 2010 10:35 pm

Done!..thank you!
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Postby MrSuccess » Sun Oct 17, 2010 10:58 pm

Rose2 - what great news . Is Dr. Dake publishing any papers .... based on patient outcomes .... so far ?


Also just wondered what happened to Selkie ..... seems to have disapeared ...... know anything ?

Mr. Success
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Postby Rose2 » Sun Oct 17, 2010 11:11 pm

Mr. S,
I am very sorry that I do not know about Selkie. Was she/he at Stanford?
I wish I had news for you.
As I understand it, Dr. Dake is very busy getting his study up and running. Fulfilling alot of criteria to get to that point along with his head of aorta position....he has a bit on his plate. I would not expect any papers or conclusions from Dr. Dake until his double-blinded study is completed.
He did share some amazing stories of others whom he had treated with impressive results. He is still collecting all the data as I understand it.
He is very encouraged with the CCSVI Liberation treatment results he sees, that i know for sure, but about any pubished papers, i am not aware.
I guess this is pretty fancy for sorry, i really don't know anything!
Sincerely, Rose2 :)
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Postby CCSVIhusband » Mon Oct 18, 2010 5:50 am

Great for you Rose(2) ... you've been a story I've followed ... and it's wonderful.


I hope the naysayers read your story ... with envy!
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Postby CRHInv » Mon Oct 18, 2010 8:36 am

Woohoo! I am so happy for you. You have really had a great run. I hope I hear those success stories too! I will see you in eight days!
Take care,
Beth
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 mags4short » Mon Oct 18, 2010 10:09 am

Great news, here's hoping we hear more of the same.

Take care, Mags x
Alone we can do so little, together we can do so much :)
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Postby msgator » Mon Oct 18, 2010 1:22 pm

I am three days post procedure and hope to have a story similar to yours this time next year.

Wonderful news.

:)

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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What wonderful news!

Postby MegansMom » Mon Oct 18, 2010 1:33 pm

Oh Rose I am just thrilled for you.

6.5 to 0.0 is AWESOME!!!!!!! and fading lesions, one can only hope they are fading into the permanent sunset!

This is just the best news ever!
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby newlywed4ever » Mon Oct 18, 2010 7:57 pm

So very, very happy for you! Thanks for letting us know and please continue to do so :D
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Postby magoo » Tue Oct 19, 2010 5:09 am

When we went to Stanford a year ago we hoped for this outcome and here it is!!!! That is some good placebo, hahaha! I am very happy for you :D
I can't wait to meet you in Palo Alto next week! We will have some serious celebrating to do. Cheers and best of luck in your second year CCSVI/MS free!!!!!!!!!!!
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.
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Postby thornyrose76 » Tue Oct 19, 2010 12:39 pm

You guys give me so much hope!! Thank you, dearly. True pioneers, hope to join this club and soon! :D
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Postby Rose2 » Tue Oct 19, 2010 6:14 pm

Thank you all so much for your true congratulations and happiness for my good health.
I do have times when I feel very guilty for feeling so well. But then I know my job is to show off and let everyone know THIS IS REAL.

My husband continues to complain, with a big smile, that I have ruined his weekends. For 10 years now he has been able to go golf with no bothers from me. Now, I get up on Saturday mornings and decide the adventure for the weekend! I love it. and I don't take anything for granted. Every stair step, every walk, every shopping trip, and just to grab my purse, run out the door, jump in the car and go anywhere, All by myself!

I visited my old (sorry Nancy) friend in St. Paul, MN. We did the old homes tour and climbed 3,000 stair steps for the whole week I was there. Lots of museums, libraries, churches, they have great architecture.
And food! I had not been able to travel to visit her and the times she had come to visit me, I was so sick, that I do not even remember.
and I traveled without wheelchair assistance! not a great thought in hindsight as I didn't know how large they have built these airports. I think I walked miles from the gate to the luggage. But I did it! That was my goal.
I did feel better quite soon after Liberation, but it was not a walk in the park and I certainly could not have done a year ago what I can do today and I know one more year will make bigger strides.
I want to stress that alot of what I have recovered came unexpectedly. I just realized the other night that I am dreaming again. I did not dream for years. It took 10 years to decline and now I am 10 years older, so patience is helpful but I do feel better daily, and if I don't, I go outside and find something different to do.
Today I pulled some oranges from high on the tree off with a puller thing.
They need to come off as the new crop is getting big. I bought a gallon container of thyme for the bees, they like it. so I need to plant that.
It is so wonderful to look just a few days ahead.
With a smile!! :) Sincerely and with Thanks, Rose2
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