Five Month Update

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

Five Month Update

Postby Jamie » Mon Nov 02, 2009 4:46 pm

Quick recap (this site has exploded, even in the couple of weeks my attention has wandered it has grown exponentially, hence the recap!).

Mel was diagnosed summer 2007, had high dose chemo (Hi-Cy/Revimmune) in May 2008. HiCy paused progression, gave her bowel function back but the rest of the symptoms (fatigue, depression, brain fog, left sided disability) had all returned with a vengeance by March/April of 2009. She had been on rebif and was taking copaxone after the HiCy.

Started reading up on CCSVI when it popped up here, went to see Dr.Dake at Stanford July of this year, 3 stents placed.

Mel continues to do extremely well.

She got a boost of energy when she stopped the blood thinners, all the bruises have gone etc and she's fighting fit.

She is working a full schedule, we've had almost constant house guests for the last few weeks and she's exercising.

No longer sleeps in or falls asleep on the couch of an evening.

I just called her (which is what prompted the post) thinking she'd be home by now but she told me she's 'at the track' - this is the three mile track she used to train on when she used to run races. Granted she's walking/jogging round but even walking 3 miles 5 months ago would have been out of the question.

We're even starting to think (rightly or wrongly) of her MS as past tense - something that happened to her not something that's happening right now. Time will tell all that though but its good to not constantly think of MS.

We're making (vague) plans for the long delayed wedding and are going to go on a ski trip at Christmas. Skiing! How cool is that - I thought I'd never get the chance to do that with Melissa.

I hope everyone else is doing well, we absolutely believe she made the right decision in all of this and I hope everyone's experience going forward bears it out.

Good luck to everyone thinking about this, heading to Cali or Italy or Poland to get evaluated or have the treatment, to those recovering at home after a painful procedure and to everyone suffering with this shitty, shitty disease.
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Postby ozarkcanoer » Mon Nov 02, 2009 4:49 pm

Hi Jamie !!!! Good news !!! Is Mel on any CRABS since the stenting ????

ozark
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Postby LR1234 » Mon Nov 02, 2009 4:51 pm

Thanks for the update Jamie, It is so great to hear how well Mel is doing long may it continue!!!
I am so happy that I am finally going to be seen by a dr who understands CCSVI.
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Postby magoo » Mon Nov 02, 2009 4:57 pm

OMG!!! Thanks for this post. I am so happy for Mel and you!!! This news makes me even more certain I made the right decision about this. Thanks!
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 Ernst » Mon Nov 02, 2009 10:31 pm

Very happy to read your update, wonderful. Happy for you.

ps. and if you wanna ski really good, you'll come in Rovaniemi. I will take you to Santa Claus :D
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Loobie » Tue Nov 03, 2009 6:18 am

Good news mate! Now get married!
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Postby Sharon » Tue Nov 03, 2009 7:40 am

Jamie -

Great news about Mel -- skiing - how cool is that? Where are you planning on going ? Let me know if it is Colorado - would love to meet up with you all.

Sharon
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Postby guitarguy » Tue Nov 03, 2009 8:35 am

That's great news!! I hope she continues to do well. :)

I hope you aren't delaying wedding plans because of Mel's MS. I delayed mine and regret it.
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Postby mrhodes40 » Tue Nov 03, 2009 10:14 am

Oh my goodness, this is fabulous. I am so happy for you guys! People like me, progressed and later MS, simply are not going to see this kind of reversal of symptoms so I am pleased to read that it happened in Mel.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sawdoggie » Tue Nov 03, 2009 10:28 am

This is very heartening and encouraging news! It is nice to have hope with crazy disease.
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Postby Jamie » Thu Nov 05, 2009 2:10 pm

Hey Sharon,

Yes, we're going to be spending two weeks in Breckenridge!

Where are you based?

Jamie
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Postby Sharon » Thu Nov 05, 2009 3:02 pm

Hi Jamie!

I am in Arvada - northwest suburb of Denver. I will PM you later --

Sharon
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Postby chrishasms » Thu Nov 05, 2009 10:16 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 2:03 pm, edited 1 time in total.
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Postby chrishasms » Thu Nov 05, 2009 10:17 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 2:03 pm, edited 1 time in total.
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Postby catfreak » Thu Nov 05, 2009 10:31 pm

Jamie and Mel,

Awesome news!!

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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