one year ago today: very brief note :-)

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

one year ago today: very brief note :-)

Postby bluesky63 » Fri Jul 29, 2011 10:27 am

Greetings to the CCSVI forum. I last posted in May, during a period in which I was experiencing some scary symptoms. And yet here I am, still, on the one-year anniversary of a very thorough venous angioplasty with an incredible team -- an almost five-hour procedure that changed my life.

From first considering the idea in 2009, I took a year of investigation and persistence getting to the point of finally undergoing that procedure in 2010, ten years after I had been diagnosed with MS -- ten-years of physical, emotional, and spiritual upheaval and renewal that I could never have imagined eleven years ago.

I consider myself one of the luckiest people alive to have met the people I have, to have had the opportunities open to me, to have been able to be with so many people here and benefit from what all of you have brought.

If I disappeared tonight, I would still be happy to have had this year, this gift. I'm not sure I would have seen this summer without the extra capacity to heal and recover, the extra strength and relief from symptoms that I gained a year ago.

Incidentally, while I see connections between vascular issues and other body systems in some symptoms, at least for many people, I am not a "ccsvi proponent" or a "ccsvi skeptic," etc. What dismissive concepts for the vibrant, real people, for the beautiful caring intelligent people and doctors I have met.

I myself am, above all else, a mom who wants to be there for my children as long as possible, a person who loves the world and wants to be part of it, and a very conservative patient. I do not advise anyone else to follow exactly what I do unless you are me. :-)

But I know many people want to hear stories, and I believe in stories, and their collective power.

I will end with a copy of the email that I sent to my brilliant vascular doctor earlier today:

Good morning -- I am writing to say thank you, thank you thank you for giving me back my life one year ago today. I have had some definite ups and downs during the year -- I always do -- but there is no doubt that the CCSVI venoplasty you did made a major change in my multiple sclerosis. I haven't felt like this in so many years. And even with the stuff I've gone through this year, I believe the venoplasty gave me the room to recover better than ever. I am so grateful -- as a patient, as a parent, and just plain as a person.

Sometimes I imagine myself walking in and hugging you and everyone on your staff because I am so, so happy at how much better I have been this year, at how much better I feel. OK, so maybe in reality I'm still sitting in a wheelchair, and I won't be actually walking in to your facility anywhere except my imagination. But if I *can* actually imagine that, then this is a huge improvement over a year ago, when I could never have imagined such a thing, and all I saw in my future was a rapid downward spiral.

But I am now allowing myself to cautiously imagine that perhaps with enough time and nurturing and patience, it just . . . might . . . be . . . possible. Watch out, maybe someday I will walk in and surprise everyone! You have given me more than just relief from symptoms -- you have given me hope.

So thank you from me, and of course from my children. After all, if I remember right, I think they were the ones who actually gave us permission to go ahead with this procedure.

All the very best --


(now the ears of my ears awake and
now the eyes of my eyes are opened)
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Postby LR1234 » Fri Jul 29, 2011 10:35 am

Good to hear you are doing well Bluesky!!

Are you on any meds to keep the veins open and flowing?

Are you on any MS meds still?

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Postby 1eye » Fri Jul 29, 2011 10:37 am

beautiful :)
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Not a doctor.
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Postby HappyPoet » Fri Jul 29, 2011 11:22 am

Your words always move me.

(11 yrs not 12 yrs--I really can be a dolt)
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Postby bestadmom » Fri Jul 29, 2011 2:45 pm

Happy tears for you.
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Postby Cece » Fri Jul 29, 2011 3:34 pm

Beautiful, bluesky....
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Postby Johnson » Fri Jul 29, 2011 4:36 pm

Thank you bluesky. It is nicer than nice to hear from you. Inimitable!
My name is not really Johnson. MSed up since 1993
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Postby Trish317 » Fri Jul 29, 2011 4:42 pm

Beautiful! You brought tears to my eyes. Praying for continued improvements for you, and imagining, along with you, for the day when you DO walk into your doctor's office.
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Postby msjen » Fri Jul 29, 2011 5:25 pm

It's definitely been a journey. Your attitude is inspiring!
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Postby HappyPoet » Fri Jul 29, 2011 5:44 pm

and a blue true dream of sky

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Postby Drury » Fri Jul 29, 2011 7:11 pm

Thank you bluesky for such beautiful words.

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Postby newlywed4ever » Fri Jul 29, 2011 7:33 pm

bluesky - you have touched so many of our lives with your words, inner beauty, positive attitude and determination. Thank you. Sincerely.
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Postby Nasti » Sat Jul 30, 2011 4:44 am

Thank you Bluesky for wording what I feel :) It is maybe a combination of stuff: CCSVI, LDN, pale relapses... but it sure feels like a cure to me as well! and the hope... priceless!!!
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Postby magoo » Sat Jul 30, 2011 6:44 am

Thank you for sharing Bluesky! I can relate to the feelings of joy the recovery CCSVI treatment has brought us. Our kids have a better mom and I'm sure have learned some life lessons. I am hopeful for more recovery for you!!
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 Daisy3 » Sat Jul 30, 2011 12:48 pm

Really happy to hear you are ok Bluesky:-)
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