Rose Follow Up @ Stanford

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

Postby costumenastional » Mon Jan 04, 2010 12:51 am

One billion thanks to all the ccsvi pioneers for letting the rest of us know.

This would be greast even if it could help only one patient. And i mean it.

Liberation it is!

Spiros, Greece.
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CCSVI / Stents / The meaning of life etc etc !

Postby LSITC » Mon Jan 04, 2010 3:42 am

Rose - i am so happy for you.
Please carry on your amazing recovery - you are a beacon in this morass of pros and cons regarding CCSVI.

I live in London, England and had just got onto Dr Dake's list when the clinic was closed down pending results of studies. I am just hoping that i can get back on it as no one in England has any inclination to take this seriously.

A very happy and healthy new year to you.

Mrs MS

:lol: :oops:
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Postby dialed_in » Mon Jan 04, 2010 8:07 am

If you start checking the last few pages in this forum you'll find lots of different people's stories about going to Stanford. Say pages 16 to 21. There are probably quite a few more in earlier pages but I've sort of been reading them backwards from the end of the forum the last couple of days.

Lots of people reporting in right from the recovery room, or through relatives or other posters here. It's well worth the read.
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MS Moment?

Postby Rose2 » Mon Jan 04, 2010 8:16 pm

Ok, today I left in time for my PT appt for my rt shoulder. Only to realize 1/2 way there that my appt. is tomorrow.
So, I pulled over, called the office ON MY CELL PHONE!, and they confirmed my appt. is tomorrow.
SO, I always wanted to go to the Dollar Store they built years ago, so off I went all by myself!
It was fun and I got stuff for a dollar each! really I needed clothes hangers, so found those, and canned beans and diced tomatoes for my chili beans. gosh 1/2 the price I paid at Safeway the other day! Shocked I tell ya!
Got new kitchen towels and cloths, too.
So I pushed the cart around for about 30 minutes then stood in a long line for about 15 minutes. AND IT DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It was so fun!! I almost went into the Chinese Buffett next door but didn't want to eat alone. But I was up for it!!
Just an fyi. thanks, Rose
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Postby SandyK » Mon Jan 04, 2010 8:51 pm

I can't wait to be able to say..I did it! You and all the others have given me a tremendous amount of hope. What does your family think? I have had this for most of my daughters life and she doesn't remember what fun we used to have dancing and running and just being goofy. I can't read these darn posts without tissue!
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Postby Johnson » Mon Jan 04, 2010 9:07 pm

Rose, that's excellent! You sound like a kid in a candy store - as we all should be until we are 95, or 102...

I think that when something like MS/CCSVI hits one, and all of the debility, and such takes hold, we become thankful of any small beauty or mercy. To carry that back into "real life" must be incredible. Thanks so much for the cheer.

" I have had this for most of my daughters life and she doesn't remember what fun we used to have dancing and running and just being goofy."

Ah, yes SandyK. My 3 years old has only known me with MS/CCSVI. I have been going Secondary (I think...) since he was born. I used to dance with him in my arms, and then with him, but I just don't have it in me lately. I keep telling him that this summer will be different. I am to go to Poland in May, and I am just crossing my fingers for that to be true.

We will all be free of our shackles soon. I believe in that.
My name is not really Johnson. MSed up since 1993
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Postby Rose2 » Mon Jan 04, 2010 9:10 pm

to SandyK:
my husband is sitting right here and I will type what he says about my new status:
" I was looking at a future of my wife becoming an invalid. I am so grateful to God and Dr. Dake that I have my wife back after a decade. The recovery is absolutely a MIRACLE. The only people that doubt this are those who would believe the Flat Earth Theory. This is the future for MS patients, it is an open door and the BS of having to stop progressing treaments is sad. The only thing that I know is that it works. And I thank God that she got in before the red tape started"
Ok, now he is in tears and I will stop quoting him.
He adds that he cannot understand how anyone can be closed minded to this and defends my choice to jump in with both feet.
he would like to sign off Allen, PhD in Life.
It is heartbreaking to both of us that everyone is not on the bus.
We are grateful to be able to be an example of this treatment success.

My kids are 27 and 30. My younger son graduated from HS a month before my diagnosis. I was not able to sit and watch his sports participation in the few years before my diagnosis, and now I know why. it is hard on kids whenever Mom is sick. especially with anything chronic. they carry more weight than we ever want to realize or admit. I pray for your Liberation and your symptoms to improve. I promise you that mine is the real deal. I am not selling anything. Sincerely, Rose
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Postby Sharon » Mon Jan 04, 2010 9:23 pm

Amen.....(a prayer of thanksgiving! - thank you Rose)

Sharon
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Postby CRHInv » Mon Jan 04, 2010 10:00 pm

Bless your heart Rose. I am so glad to hear all of your news. I think it is all so valuable and it is so nice to hear. I can't wait for the days to come when we have more people on their way to procedures that we can cheer on. I only know of greyman right now. Maybe some more of us should post this stuff too. I want to keep people positive that this is real.

Johnson and Sandy - I can't wait to hear stories of you dancing again!
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 Johnson » Tue Jan 05, 2010 12:07 am

CRHInv wrote:

Johnson and Sandy - I can't wait to hear stories of you dancing again!

Thank you, CRHInv. I might even post scary videos of my jig. Grin.
My name is not really Johnson. MSed up since 1993
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Re: MS Moment?

Postby CureIous » Tue Jan 05, 2010 12:43 am

Rose2 wrote:Ok, today I left in time for my PT appt for my rt shoulder. Only to realize 1/2 way there that my appt. is tomorrow.
So, I pulled over, called the office ON MY CELL PHONE!, and they confirmed my appt. is tomorrow.
SO, I always wanted to go to the Dollar Store they built years ago, so off I went all by myself!
It was fun and I got stuff for a dollar each! really I needed clothes hangers, so found those, and canned beans and diced tomatoes for my chili beans. gosh 1/2 the price I paid at Safeway the other day! Shocked I tell ya!
Got new kitchen towels and cloths, too.
So I pushed the cart around for about 30 minutes then stood in a long line for about 15 minutes. AND IT DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It was so fun!! I almost went into the Chinese Buffett next door but didn't want to eat alone. But I was up for it!!
Just an fyi. thanks, Rose


So awesome. New discoveries every day. Just doing normal stuff in a normal fashion is like superpowers. Keep em comin! WOW.

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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Postby magoo » Tue Jan 05, 2010 8:20 am

Rose,
I read your husband's response to my hubby and he agrees 100%!
My husband has watched me go from normal to MS, to MS robbing me daily, to now being free of MS. He has had a front row seat to the good, bad and the ugly. I look to him to give me an honest opinion about my health. When it was bad and I tried to deny it, he watched out for me. Now when it is good, I look to him for an objective opinion to weigh the benefits.
He is 100% convinced that this has changed me back to the woman I was before MS. When I just "do" things now without thinking, he tells me how remarkable it is. He has said over and over again how I never would have been able to do the things I do now before the surgery.
Maybe we should start a thread to announce things we can do now that we are free???!!!
I am so happy for you Rose! I also think about all of you waiting and wanting this. I am sure everyone will benefit soon and I can't wait to hear your stories too!
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 annad » Tue Jan 05, 2010 8:36 am

That's great Rose! and to all of you post-stenters! We all want to get where you are!! Rose. . .furniture shopping, dinner and grocery shopping would take me a month to do! You go!!
have a wonderful day!!!
:)
love happy faces!!
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Postby catfreak » Tue Jan 05, 2010 1:48 pm

Rose,

I have just read this whole thread and it makes me smile with excitement to read all of your accomplishments and new discoveries since your procedure.

I can say that is was the best thing I've ever done. Keep posting all this positive news!!

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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Postby cheerleader » Tue Jan 05, 2010 2:52 pm

give your hubby a big hug for me, Rose. I know just how he feels...some tears and a big smile for you both,
cheer

costume...welcome. Your big gansta pic is messing up our page size, if you wouldn't mind sizing him down? thanks!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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