Rose Follow Up @ Stanford

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

Postby jay123 » Sat Jan 02, 2010 2:10 pm

Congrat's, thats amazing progress!
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Postby leetz » Sat Jan 02, 2010 5:15 pm

I am so happy for you...God Bless...

Leetz
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Katie41 » Sat Jan 02, 2010 7:14 pm

Rose, what a terrific way to start the New Year!!! Congratulations on your wonderfully rejuvenated abilities!!!
Katie
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Re: Improvement still

Postby CureIous » Sat Jan 02, 2010 10:29 pm

Rose2 wrote:My son gave me a "Cognitive Graduation Present" for Christmas! A cell phone!
I haven't had a cell phone in at least 5-6 years because I just didn't need one. So, now I am texting, taking photos, etc. and I can do it!!
I realized I had not shared that with you and I don't know if you all are cell phone proficient, but for me it became too difficult as the darn things got alot smarter than me, hence The SmartPhone! ha ha
But I had lost those 'abilities' and my son made me realize how very much I AM BAAAACK!!!!!!!!
Sorry so long. Sincerelry, Rose


What a great update, so happy for you! Isn't it incredible to do things with ease that became so difficult? Thanks for keeping everyone in the loop.
Enjoy your regained abilities, I'm sure your family is as happy as you are!

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 CRHInv » Sun Jan 03, 2010 6:48 am

Rose, I am so happy! This is great news. I am having the same type of improvements and completely understand your joy. Isn't it amazing? Happy New Year! 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 Sharon » Sun Jan 03, 2010 8:08 am

Rose -
I too received one of those Apple I-phones for Christmas. What a new and fun experience.

It is great to hear that you are back to driving --- a little independence never hurt anyone!!

How did you do with the stress and fatigue of Christmas? Was there a difference from last year for you? I know Mark (curious) said he took care of the kids over Christmas break -- something he would not have contemplated last year. For me, Christmas was the best -- I cooked, I played, I enjoyed --- never missed a thing. I was tired, but so was everyone else!

Happy New Year,
Sharon
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Postby magoo » Sun Jan 03, 2010 8:56 am

Fantastic news Rose!!!!!
I can relate to doing things without thinking. It is so freeing. It is easy to forget the "old you".
Continued health and happiness in this new, wonderful year :)
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 Rose2 » Sun Jan 03, 2010 2:27 pm

Thank you all SO much for sharing joy in my improvement progression.
I really appreciate the kudos. It IS amazing.
Last night I laid awake figuring out how to clean out the spare bedroom of all the stuff my boys have dumped in there over the last few years as they moved from apt. to house to apt. I am sure SOMEONEcan relate??
Why do I get all their stuff when they move?
Well, because I let them and I never felt well enough to do anything but shut the door, so NOW this Friday, my friend and I are tackling The Room.
I would add a photo but you wouldn't believe it. Books, on coats, on blankets, on sutcases, etc.
Sharon, I did really well with the Holiday crazy. I decided years ago when MS prevented me from doing what I used to do (decorate, cook, bake, be involved, etc) that Jesus would not want me to be stressed.
It is hard to even have the TV on and not stress with every commercial reminding me how little time and money I have left.
So, a simple small fiberoptic tree I had down at the office and no shopping. I got a Christmas dinner pre-made at a local restaurant chain, Mimi's, and it was good. I have done it before and had great luck.
I DID participate in our family tradition to go see a movie on Christmas Day. We saw Sherlock Holmes. The best thing was I walked in and stood in the long 1/2 hour line with everyone else!! No kidding. The line went out the back of the multi-plex and I stood in it and never flinched.
The last time I tried going with the group on Christmas Day I had to wait in the Lobby in a chair then when they came to get me I had an unattractive verbal exchange with the guy behind us in line who thought I was cutting in. My family was very empathetic to his concern and tried to explain my situation, but it was futile and I never tried it again.
So, again, sorry so long, but it was AWESOME. Then we came home and I put the pre-made dinner together. Still not so easy as it required alot of standing, bending, lifting, etc. AND I DID IT! We even had the neighbor boys over, so it was the real deal!
I am doing a load of wash right now. The first in years. Don't laugh.
I have clean clothes, just not washed by me. I am one happy camper!
Sincerely to All, Rose
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Re: Improvement still

Postby simone » Sun Jan 03, 2010 6:56 pm

Rose2 wrote:My son gave me a "Cognitive Graduation Present" for Christmas! A cell phone! Because I am now out and about driving on my own and he thought I should not be without one.
I haven't had a cell phone in at least 5-6 years because I just didn't need one. I was always home or someone drove me everywhere.
Also, they were too difficult for me to figure out. That was a decline from having had one for years before that.
So, now I am texting, taking photos, etc. and I can do it!!
I realized I had not shared that with you and I don't know if you all are cell phone proficient, but for me it became too difficult as the darn things got alot smarter than me, hence The SmartPhone! ha ha
But I had lost those 'abilities' and my son made me realize how very much I AM BAAAACK!!!!!!!!
Sorry so long. Sincerelry, Rose


What a wonderful gift of freedom you now have. So happy that you are doing so well. Thank you for sharing your joy and all. HAPPY NEW YEAR!!!!!!

Simone, in internet fog still.
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Postby ndwannabe » Sun Jan 03, 2010 7:13 pm

I am crying reading your update Rose. Thank you so very much for taking your time and writing out your experience!
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Postby Rose2 » Sun Jan 03, 2010 8:50 pm

Thank you to everyone. and please have faith. This is REAL for me and others I have heard from. It WILL happen, in this I do believe.
also, I read a mystery novel. something I have not done since DX in 2001. yep!! It is a true thing. I have tried to finish several books in the last few years without success, but now I did it. I do not know the real reason. I just know that I CAN do it now. good book too.
I like Sue Grafton novels. Set in Santa Teresa, really Santa Barbara, my old stomping grounds.
Rose
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GOD HAS BLESSED YOU!!!

Postby leetz » Sun Jan 03, 2010 8:54 pm

I am soooooooo excited for you and all of us here...this is something...at least we have something...we have all been blessed in some way by your success. Please keep telling us your story(even the little things matter so much!!!). Hopefully one day we will all be able to share OUR stories of success...God Bless us all.....


LEETZ
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Postby Rose2 » Sun Jan 03, 2010 9:46 pm

I just did (well, it took all day) 4 loads of laundry. Washed, dried, folded.
I did not hang up cuz my right arm shoulder is still healing, so I will leave that to others but i hung them over the backs of a few chairs, ready for hangers if that counts.
Yep!!!! I did it all myself!! Liberation! Yesssss!
Jeez, I feel like a bra burner in the 60's!! ha ha
Sincerly, Rose
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Postby SandyK » Sun Jan 03, 2010 10:19 pm

That is awesome! There are two things I can't wait to be able to do once again...clean the house the way I want to and have sex without it being a scheduled event! My time is coming.

Keep posting. I love reading them.
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Postby ndwannabe » Sun Jan 03, 2010 11:19 pm

Rose, would you mind posting your experience during the surgery? How long did the testing take? How involved is the testing?

I have sooo many questions!

If I am lucky, I will be going to Stanford as well (I am also a Bay Area local). Can I invite you for lunch? (I am a married woman if it matters :lol: )
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