Need info ASAP!!

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

Postby Katie41 » Tue Jan 12, 2010 6:41 pm

Kacey,

What a wonderful outcome! Great work! Dr Mehta is an amazing find. They are out there. One by one.....Congratulations!
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Postby bestadmom » Tue Jan 12, 2010 6:44 pm

Congratulations. You did great for your husband. I hope this brings him relief. I am sure it will.
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wonderful

Postby leetz » Tue Jan 12, 2010 7:09 pm

amen!!! please let us know of his results...good or bad...trust me we can handle just about anything!!!

trooper!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby SandyK » Wed Jan 13, 2010 1:06 am

You did an excellent job Kacey. I was blubbering when I read it, too!
Diagnosed 1994, Self EDSS is 6.5
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Postby HappyPoet » Wed Jan 13, 2010 7:32 am

Kacey,

I'm very, very proud of you and of your husband, too. I hope he's recovering easily and that "The Liberation Procedure" brings him much symptom relief.

You're one terrific lady, that's for sure!

I sent you a Private Message with more congratulations, so I'll end here and wipe away my tears of happiness for you and your family.

Best wishes!!!

~HappyPoet
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Postby jenf » Wed Jan 13, 2010 6:46 pm

Kacey,
I am sooo happy for you and your hubby! You are truly an amazing person! It's people like you that will change the outcome for those of us who suffer. Thank you for all you've done!! I've been sitting on this information since September trying to determine my next step... you acted instead. YOU made the difference!!! Congratulations!!!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby Kacey » Wed Jan 13, 2010 7:38 pm

Now that we are on the other side of it, all we can do is wait and watch. So far, Michael has done a LOT of sleeping. Pretty sore in the groin and still a bit of soreness in the neck and shoulder.
And we are still in total SHOCK! From reading all of the posts (I've been poring over everything related to CCSVI on this forum for months!) I knew that there was a blockage. No doubt in my mind..... I was just worried that Doc wouldn't see it. Especially since he had no experience with this at all. And then the evening before came the anxiety..."what if it isn't??" "With our luck....." So many demons...
Even if he has just a small amount of relief it would have been worth it. Just have to get the man to wake up long enough to tell. BUT!! I'm sure all the new fluid levels adjusting in the brain AND being a person with MS, this will take a bit to come back to life, per se!
Will keep you all posted. Thanks so very much for the encouragement and the kind words. It means more to me than you can ever know....
May God Bless you all as he has blessed us!!
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Postby ozarkcanoer » Wed Jan 13, 2010 8:31 pm

Kacey, I will hope for you and your husband... that he gets well soon and get relief from his symptoms.

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update

Postby Kacey » Thu Jan 14, 2010 6:01 pm

So today is day 2 after the procedure. Michael was still sore in the groin/neck and should although the discomfort comes and goes. He is much more mobile, much more awake and alert. He did make a point to say that his usual "afternoon slump" (depression becomes more severe, he gets really quiet and very very tired) was absent. Our friend, who by the way, was the angel who sent me the link to the CTV story on The Liberation Procedure, noticed a difference in Michael's personality today as well. He also says that the numbness in his arm has decreased. It used to be in the entire arm, and seems to be more localized to his hand...he had pep in his step this afternoon and he even washed the pots and pans!! (I swear, this does not happen in my home. He usually loads up the dishwasher and leaves the big stuff for me!)
Such great news to share! I wasn't sure how quickly he would feel any relief...the further he gets away from the procedure I hope to share better and better news!!
God bless you all!
Kacey
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Postby ozarkcanoer » Thu Jan 14, 2010 6:06 pm

Kacey, I am so happy for you and Michael. It makes me feel that help is on the way for me too !! :D :D

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Postby Kacey » Thu Jan 14, 2010 6:12 pm

We are getting there, my dear!
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Postby annad » Thu Jan 14, 2010 6:23 pm

That's amazing, Kacey! Thanks for making my eyes tear up. . . . good tears!
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Postby Kacey » Thu Jan 14, 2010 8:08 pm

Those are the best kind. Have been shedding a few the past couple of days!
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Postby HappyPoet » Thu Jan 14, 2010 8:15 pm

Kacey,

Wonderful news again!

Washing pots and pans is terrific!!

I just can't say enough how happy I am for your family. Your husband's improvements must make you all so thankful and beyond happy, and I hope even more symptom relief comes his way along with slowing/stopping disease progression.

You and your husband have given me hope, and sometimes hope is what's needed most. It's extremely generous of you to post updates, and I thank you from the bottom of my heart that you're doing so.

Hoping to hear from you again soon!

~HappyPoet
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Postby jimmylegs » Fri Jan 15, 2010 4:58 am

i love the victories we can enjoy over ms. i have not had the ccsvi testing or treatment procedure, but i do remember thinking i would never take *insert simple task* for granted again. but i do take my recoveries for granted, and notice my small remaining deficits, until i read posts like this. thank you.
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