Rose Follow Up @ Stanford

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

Rose Follow Up @ Stanford

Postby Rose2 » Wed Dec 09, 2009 2:58 pm

Hi All!
Hope it's OK to start a new thread. Today I go to Stanford for my follow up MRIs and consult w/ Dr. Dake tomorrow at noon.
I am so anxious to see how it all looks inside. I sure feel sooooo good.
Sunday I went furniture shopping with my son for his apt., went to dinner and then went grocery shopping!!!
This is soo huge!! I am sooo thrilled.
Yesterday I dropped in on my 'old' office where I worked and EVERYONE exclaimed, YOU LOOK SO GOOD!
It has been surprising to me how many people look me in the eyes and see how much better I feel=how much better I look!
They all wanted to know when I am coming back to work cuz I sure look like I feel great!
and I do.
So, I will let you know how it all goes at Stanford and Dr. Dake.
Thanks for everyone's support. Sincerely, Rose
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Postby ozarkcanoer » Wed Dec 09, 2009 3:06 pm

Absolutely marvelous, Rose !!!

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Postby Johnnymac » Wed Dec 09, 2009 3:08 pm

Awesome Rose, I'm so happy for you! Thanks for sharing your experiences! I read these to my wife whenever I see an update... it keeps her hope strong!
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Postby CureIous » Wed Dec 09, 2009 3:16 pm

I swear the follow up is better than the first consult. You go from "how bad things are" to how much better they are. Looking forward to hearing your report.

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 » Wed Dec 09, 2009 4:19 pm

Rose,
My follow-up yesterday was fantastic! I too was a little nervous, but the stents were perfect. No more Coumadin! I am sticking with the plavix for a while as insurance.
The meeting with Dr. Dake was so uplifting and exciting. Even though he is coming under some serious fire from the neuros, he's strong and will continue fighting for us.
I hope your appt. is as happy as mine was and I am so glad you are doing so well!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Keep us posted.
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 Johnson » Wed Dec 09, 2009 4:56 pm

I am so very, very happy for all of you who are regaining yourselves. It is wonderful, and I can only imagine your relief.

I keep thinking of the Italian fellow in the W5 piece who said that he can't remember what it feels like to have MS. I can't imagine that. I can only vaguely remember not having it. Soon come, we'll all know, I hope.

My head is too full of dreams (and fog).
My name is not really Johnson. MSed up since 1993
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Postby jay123 » Wed Dec 09, 2009 5:12 pm

I REALLY AM HAPPY for all of you reporting on your follow-ups and how great you feel - but boy does it make me feel even worse knowing my appt was cancelled............
Please though, I really do mean it's great that i's worked so well for all of you that were lucky enough to get in.
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Postby magoo » Wed Dec 09, 2009 5:23 pm

Jay,
I am so sorry. I can't imagine how hard it must be to be so close, then to be put on hold. I really feel for all of you. I want more than anything for everyone to get their lives back. If it helps, I know Dr. Dake will not give up. He will prove this and we all will all benefit, IMHO.
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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I'm back!

Postby Rose2 » Thu Dec 10, 2009 6:31 pm

Hi All!
I had the follow up MRIs last night and my consult with Dr. Dake today.
He is very happy with my results and I am off the Coumadin!! Yippee!!
He showed me my MRIs and the Azygos (sp- I know) was a huge difference.
My upper stent is where it should be and all is good.
So, I am very happy and there are no limitations on my activities.

We had time to kill so I showed my husband parts of the campus he had not seen before, the Hoover Institue, etc. THIS IS ALOT OF WALKING and the last time I was there I was pushed in a wheelchair by friends.
NOT THIS TIME!! I walked all over that darn place!! Found the bookstore a few buildings over, etc. etc.
Every day has something new for me. Honest truth.
Alot of if is just getting out of this old mindset of not even thinking TO DO IT. Does that make sense?? I mean I have put so many ideas out of my head or reach in the last 10 years, that now I must remember what USED to be the norm for me. Sorry if disjointed.
ALSO, I saw Alex and spoke with her at length. She is VERY busy getting the 'study' together and I met a guy, sorry I forget his name, who is part of her Study Team to keep everything organized.
She is such a perfectionist and gets so many emails and she wants so much to make sure EVERYONE gets the opportunities that some of us have already had.
Trust me, Dr. Dake and Alex (and I know many others who I cannot name) are THRILLED to be involved in the new opportunities that CCSVI could and do hold for us.
I know from what I saw today that this is not going away and they are excited for all reasearch and results. They are just as excited to be learning about it as we are to be helped by it.
So those of you who have been cancelled or are further away, please feel optimistic in what I learned today. Dr. Dake is trying to learn all about this just as we are. He knows this is all new and we Newbies are the Pioneers. and he appreciates everything he has learned from ALL of us.
Sorry so long. I want to express the real optimism I observed from Dr. Dake.
He did make a point of discussing the Pharma and how he sees other big things coming down the Pharma 'pike' shortly, also, and that none of us MSers should close our minds to those avenues, either.
It takes a Village, I guess and CCSVI can be a big help.
I hope this makes some sense. I feel intimidated to write here as you all seem so good at it. Sincerely, Rose
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Postby ozarkcanoer » Thu Dec 10, 2009 6:34 pm

Rose... You write very well and from your heart. Your posts are giving all the rest of us sorely needed HOPE !!!
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Thank you!

Postby Rose2 » Thu Dec 10, 2009 6:57 pm

Thank you Ozark!
I needed that. Rose
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Postby prof8 » Thu Dec 10, 2009 6:58 pm

Thanks Rose for the info. I did not get to meet Alex but I think I met the study guy. I'm still in Palo Alto. I may swing over there tomorrow and say hi to Alex since I also need to pick up a copy of my MRI/MRV. I'm so happy you were able to walk all over the campus!! That is so wonderful that you feel better.
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Postby CureIous » Thu Dec 10, 2009 8:13 pm

Wow between you and CnClear those are some pretty stellar reports. The new mindset is great too. You actually start thinking of possibilities instead of limitations when it comes to the future. Just doing without thinking like you said. Enjoy your new life. :) 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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Improvement still

Postby Rose2 » Sat Jan 02, 2010 11:16 am

Yes, I agree with the post that there is ALOT on this CCSVI Forum now that can make it difficult for newbies or medical investigators.
I did post some of my improvements on the Happy New Year post yesterday but thougth I would come back to this one and keep it here.
Maybe that will help in someway?
I don't know the answer for the spreading focus, but I do agree. How to reign it in and/or catagorize with CCSVI? Moderator?
Anyway, I was thinking last night that I had not shared my great Christmas story!
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
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Postby cheerleader » Sat Jan 02, 2010 12:18 pm

Rose, I'm so happy for you! Jeff's able to drive again, too! (he was afraid last year before his procedure, since he'd fall asleep at the wheel.)

What a thrill to have the brain power to use the new cell phone technologies! Thanks for checking in and sharing. Yes, it's crazy around here, and hard to keep focus, but the word is getting out and people are organizing around the globe to get more doctors involved. Happy new year, Rose-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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