Excited and Delighted!

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

Excited and Delighted!

Postby Katie41 » Sun Dec 06, 2009 12:43 am

Many, many thanks to all of you who have so faithfully posted your CCSVI experiences! I'm excited and delighted to tell you that I'm off to Stanford for testing, Dec. 17th and stenting, Dec. 18th! I did hyperbaric chamber treatments last summer and had great (but, not lasting) results, so I know I can improve at least that much!

Your blogs have helped tremendously these past months. I feel as fully prepared as one can. The info regarding CCSVI has answered so many questions for me like: why chelation worked so well, why I almost fall asleep when my head is tilted down and instantaneously wake up if I stretch my neck, why exercise makes me feel so much better, and why hyperbaric worked so well. Thanks so much for helping to make my journey through this so much easier!
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Postby CureIous » Sun Dec 06, 2009 1:23 am

Oh, my fellow midnight oiler, welcome aboard and do hope your trip to Stanford is productive and safe in all aspects. :) 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 Algis » Sun Dec 06, 2009 1:55 am

Best of wishes Katie :)
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Postby Johnson » Sun Dec 06, 2009 2:41 am

I'm very happy for you, Katie41. The 18th is my birthday, and, I hope, auspicious for you as well as me.

Please come back and tell us of your experience. I can't wait to go to Poland, but like everyone, am filled with anxiety and hope. We need news.
My name is not really Johnson. MSed up since 1993
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Postby CRHInv » Sun Dec 06, 2009 5:52 am

I am excited for you too! Please keep us posted on how you are!
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 Mutley » Sun Dec 06, 2009 9:30 am

That's really good news Katie, I'll be keeping my fingers crossed for you.

All the best.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby CNClear » Sun Dec 06, 2009 6:15 pm

Katie, I'm very happy for you...and for me, too, because I am leaving in a few hours for Stanford, for testing/procedure dec 8th & 9th...after reading about the 'dreaded email' I got scared that I might have been cancelled and they forgot to tell me...yikes! (and there has been no reaching anyone over the weekend...so...) But since you are scheduled after me, I feel confident that we will both get to 'get done.'

To all the people who have been waiting and now find out you have to wait some more....Please take heart that it WILL happen for you...there are many of us, not directly involved in medicine, and more doctors than there were last week, who continue to do what we can to make CCSVI available to anyone who wants it...I'm so sorry for the disappoinment you feel and wish I could do something to help...our prayers are for you, too, to help ease your burden.

I can finally go pack, now....profound thanks to everyone who has used their time, energy & immense hearts to share their experiences here on TIMS...you have given us an immeasurable gift...thank you.

Lisa aka, CNClear
RRMS dx 1983
Off to meet the good doctor!
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Postby Sharon » Sun Dec 06, 2009 8:49 pm

CNClear and Katie41 -

Good luck to both of you as you travel to Stanford and start your CCSVI journey. Know there are a group of us waiting for you to share your own personal story.

Take care and safe travels.

Sharon
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Postby jr5646 » Sun Dec 06, 2009 10:09 pm

Best of luck Katie and Lisa... may you both have blocked veins !! Oh what an early Christmas present!

I hope to follow your footsteps soon....

Don't forget to try the sourdough bread... can only get it in the area.. good stuff..
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Determined

Postby Katie41 » Mon Dec 07, 2009 10:33 pm

Thanks to all of you for your tremendous support! What a difference a day makes! It still doesn't seem real that I received the dreaded "Alex" call today. All those times I couldn't wait to hear from Alex; but, today, when I heard her voice, I knew what she would say! I could have gone to have it done in November. Since I teach, I choose to wait until Winter Break. Aghh!!! But.... I am determined!

I really feel badly for those who were already at Stanford, so near, and yet, so far! And, can you imagine being Alex and having to make those phone calls?! Hopefully Alex will call us all soon with good news. Somehow, it will work for everyone. I have to keep remembering that everything happens for a reason. I just can't remember one good reason, at the moment. Guess I'll have to get all the crying out, and then be like Scarlet and think about it tomorrow.......
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Postby Katie41 » Tue Dec 08, 2009 3:39 pm

Well, woke up today thinking of "Unsinkable Molly Brown". "I ain't down yet!" Still up and down, but, am trying to keep it there that we all will be able to be treated SOON! The info from everyone continues to help....lots! Thanks so much!

I'm still going for testing and consult on Dec. 17th. By then, maybe there will be more info. Let me know if there are any specific questions you want me to ask Dr. Dake.
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Postby Johnson » Tue Dec 08, 2009 3:51 pm

I read a book many years ago called Been Down So Long, It Looks Like Up to Me. (I don't recall author or ISBN at the moment. Grin) I picked up the book because of the title, long before MS, and that phrase is how I feel right now. It may take many months, but there is light on the horizon, and it doesn't seem so dark anymore.

Watch me get an Optic neuritis for that bit of cheer, I write with nervous laughter. Touch wood.
My name is not really Johnson. MSed up since 1993
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