Today is a reward, 5 1/2 months post surgery

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

Today is a reward, 5 1/2 months post surgery

Postby magoo » Mon Apr 05, 2010 4:41 pm

I am 5 1/2 months post surgery for CCSVI. It was winter when I was treated. I can take hot showers and have done many things which would say I do not suffer from that dreaded MS heat intollerance but, I just had to wait for a summer day to prove it. Today was that day.
I just have to share this.
It was 90 degrees today and my family headed to the US National Whitewater Center. I had never been before today because of my MS. We went on a guided kayak tour. I had a 2 person kayak and my 10 year old son sat in front. We paddled in full sun for 2 hours. It was hard.....but I did it! Then we rented bikes and rode a trail. I have not been on a bike in a really long time.....and I did it! Then we went to the "climb to zip" course. I raced my 10 year old 35 feet up a climbing a pole with footholds like those on a climbing wall.....and I won! When my son and I were hooked up to the zip line which would take us to the ground, I knew this was my reward for beating MS. It was a little scary to fall from that line, but I felt like it was a new beginning for me and my family. My boys really knew they had a new Mom. My husband was going on and on about how I would NEVER have been able to do any of this before treatment. He had a big grin on his face.
As we stopped to grab some cold drinks a young woman passed me having a lot of difficulty walking. She had crutches on her arms and her boyfriend was helping her to the elevator. She said to him as she passed me, "my foot drop is really bad" and she could barely shuffle her feet. At that moment I knew how lucky I was. I wanted to grab her and tell her all about CCSVI, but didn't. I really hope she knows about this, and I really hope everyone with MS has the opportunity to be tested and treated.
Thanks for letting me share my amazing day. Thanks to TIMS and to some amazing and smart people here for this miracle. Because I have been so blessed, I will continue to advocate for CCSVI and all people with MS.
Rhonda
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 happy_canuck » Mon Apr 05, 2010 5:09 pm

magoo,

That's incredible news and brings hope to everyone here. Thank you for sharing it and good luck to you and your family!

Might I suggest you write a letter to the editor of youyr local paper with your exact post contents? I think your words will find their way to that woman who was struggling a lot faster, and to many more just like her, who don't know about CCSVI because they have been told not to hope for anything until it comes out of a neurologist's mouth. Like I was.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby CureIous » Mon Apr 05, 2010 5:13 pm

Splendid. Indeed. I've emptied many a water heater since my procedure! :)

So cool isn't it???

M
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 newfie-girl » Mon Apr 05, 2010 5:16 pm

Magoo, I am so happy for you. As I read your post, I visualize in my mind, as you describe all the wonderful, fun, things you were able to participate in once again today with your family. As I contine to read my thoughts run wild, imagining how great it would be for all of us MSers to be given the chance to once again enjoy this quality of life that we so........much deserve. I pray for you and your family that you all have many more happy outings together, cause this is a just the beginning. Wishing you much more progress and complete reversal of this terrible illness. YOU GO GIRL.........
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Postby prairiegirl » Mon Apr 05, 2010 5:21 pm

Thanks for the encouraging post magoo. So much up and down news -- the positive reports are so appreciated, as is your continued advocacy for CCSVI treatment.
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Postby ozarkcanoer » Mon Apr 05, 2010 5:27 pm

magoo,

You are a real inspiration for all of us not-yet-liberated !!

ozarkcanoer
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Postby magoo » Mon Apr 05, 2010 5:31 pm

:D Thank you, thank you, thank you!!!! You all are the best.
Sandra, funny thing as I was writing I was thinking this could be a good thing to send out. I'll do it!
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 catfreak » Mon Apr 05, 2010 5:34 pm

Oh Rhonda!! That is amazing! I am so excited for you. You did a lot of stuff with your family all in one day, so cool.

We are a lucky bunch and we must never forget it.

I am smiling just thinking about your day!

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 magoo » Mon Apr 05, 2010 5:37 pm

Thanks Cat! We are a very lucky bunch :)
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 happy_canuck » Mon Apr 05, 2010 5:56 pm

magoo wrote::D Thank you, thank you, thank you!!!! You all are the best.
Sandra, funny thing as I was writing I was thinking this could be a good thing to send out. I'll do it!


You wrote from the heart, magoo, so the words will reach someone who needs it the most. I know they gave me renewed hope for my future :-)

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby ndwannabe » Mon Apr 05, 2010 6:04 pm

Rhonda! How could you! :wink:


You made me cry happy tears for you so hard! It is so great to hear such great post-op updates amongst the ones that are either not seeing much improvement or have complication.

Gosh, it sounds almost unbelievable (not that I am doubting what you are saying!). Could I some day be able to say / type those same words?
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Postby Rose2 » Mon Apr 05, 2010 6:09 pm

MAGOO!
CONGRATS ON SUCH A WONDERFUL DAY!
Ditto! Ditto! Ditto!!!!!
I know from where you speak! I feel like the Nike slogan, Just Do It! and I do! and you did!
I am making so many Spring plans; Yosemite, beach, etc.
And I know I will make it. No more crappy moments.
I know how your heart ached for the woman you saw and you wanted to yell it from the tree tops but just can't butt it. I know.
I am almost 5 1/2 months. Should we be wary of the 9th month? haha
I understand the relief you see in the eyes of your family. I see the same thing in my husband and my sons. My sons are adults and they are still more relieved everyday as they see me NOT regress.
Here's to YOU, MAGOO!!! YOU GO GIRL!!!!!! XO Rose ;)
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Postby SandyK » Mon Apr 05, 2010 7:21 pm

Rhonda, I am so happy but at the same time so very envious of you. Your post will keep me struggling for someone to listen to me and help me. Thank you!
Diagnosed 1994, Self EDSS is 6.5
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Postby JoyIsMyStrength » Mon Apr 05, 2010 7:48 pm

Congratulations Rhonda, and great big hugs and high fives to you! Thanks for continually inspiring us! I feel happier tonight!

Pam
8)

(See those sunglasses? I'm gonna' need them when I'm liberated and playing in the sun!)
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Postby Vhoenecke » Mon Apr 05, 2010 8:22 pm

Magoo,

You made me so happy reading your post. I can't wait for that kind of experience myself. I am looking forward to going to Disneyworld in Florida this Christmas after my liberation. All the best in your continued wellness. Don't be scared to talk to people, that's how they learn.

Val
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