This Is MS Multiple Sclerosis Community: Knowledge & Support

hoodyup,

I am so glad to hear that Sharon seems to be improving. Sitting in the sun is wonderful if you can take the heat. That in itself is positive ! Your story is fascinating and I can't wait to hear another update. Good luck and good health to you and Sharon.

ozarkcanoer

I am so excited for both of you! Take it slow and enjoy the progress.
Keep the updates coming.
Take good care,
Beth

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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.

Hi Andrew and Sharon,

I'm so happy for this fantastic turn of events for you. I'm inspired.

Michelle

Andrew,

This is just fantastic to read, just fantastic.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Thanks for the update hoodyup. And boopieup, you go! Work on that left hook!

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My name is not really Johnson. MSed up since 1993

hoodyup and boopieup,

This is absolutely awesome news!!!!

Please keep it coming!

Cat

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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.

Andrew and sharon,

This is wonderful. I am sure the "little" things you are doing for yourself now feel soo good. It is really amazing what we take for granted when we feel well.

This has put me in a better mood and maybe now I will be a little nicer to my family.

You guys should write a book, I am not kidding.

kc

Congrats to both of you! It is so wonderful to hear about the improvements so far!!! Thanks for sharing!!!!

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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.

I check for your updates every day guys! Thank you so much for finding time to give us this invaluable information!

Not to mention that all of us are rooting for you

Bingo, Andrew. Thanks for sharing in such detail. Your reporting will help others. I remember watching Jeff stacking wood in 105 deg heat last summer and thinking...this is not placebo. He's awake and present and active again...not placebo. Before his procedure he couldn't keep his eyes open to drive. He used to gasp for air at night-- and now he sleeps like a baby, no more snoring or sleep apnea, he wakes up and shares his crazy, vivid dreams with me-- and his bladder and spasms are way better. Can placebo effect change involuntary bodily functions? For a year? I don't think so...

Keep writing, and keep hoping and keep sharing with us all. I agree, you two ought to write a book!
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Wonderful News!
Relax. Rest. Enjoy.
So happy for both of you.
Sincerely, Rose

That is funny that you wrote that, kc. I was thinking of alluding to that, and said to my wife that "Hoodyup and Boopieup's , and Courtney and her husband's (I'm sorry to have spaced your name/pseudonym) stories are beautiful love stories, and would make wonderful books/movies-of-the-week (or Oscar winners for best screenplay!).

Thank you all.

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My name is not really Johnson. MSed up since 1993

Thanks all you people who are rooting for us. This ride is one hell of an emotional rollercoaster. If I were writing a book I would like nothing more than to be able to say that Sharon is 100% cured, fixed, recalls performed and nothing will ever go wrong again. Happily ever after, the end. That unfortunately is rarely the case. I am making notes of new improvements or setbacks as they come. We had 3 days of mostly just improvements, which we noted and reported to her doctor. Now we are seeing some areas of non-improvements or setbacks.

Day 4 Saturday Shower day. Lots easier than previously. Still having bladder issues. I noticed some twitching in the left leg.

Day 5 Sharon was left alone all day as I had work to do at the Paradise house. She got into her chair twice and ate 3 pieces of pizza. Another #2 and emptied it herself. She says her vision is a little worse today and her left hand feels a little weaker. And her leg has been twitching. Please don't let this be a reversal. Felt a little funky laying her head completely flat.

Day 6 Shower day again, except we are waiting for the home health nurse to take a urine sample. Sharon is certain she has a bladder infection. She said her vision seems a bit off today. Sharon has been playing on Farmville so she is still keeping her spirits up. She also can still feel the paper clip which I continually poke her with. Her vertigo is still not coming back we'll see about that heat tolerance when we get her in the shower. She has a headache this morning.
later
Well, Dr's office called -- bladder infection it is. I'll be going to pick up the the antibiotics. At least we have another "fixable" problem. Just worried because of all the others who experience initial good results only to be followed by a return of symptoms. So far she isn't sliding too far back. I hope clearing up this bladder infection helps to get us back on track. Reality is what it is, however, so time will tell. One thing I will say for her is that she is she doesn't give up. Now that she has had these positive results, if things start to go backward she is more than willing to do it all again.

She's been doing the facebook thing and updating her status on there pretty regularly so if anyone wants to hear directly from her check her FB.

"http://www.facebook.com/home.php?#!/profile.php?id=100000563792746"

I will continue to update this thread from time to time as I lurk around and read about others (it has become an addiction--but hey, better than watching soaps).

Andrew

Day 14. After a week of improvements, a bladder infection and some bad anti-biotics we were all set to see more improvements. Or at least get some time under our belt with the improvements already noted. Then, the last couple of days she has been feeling tired all the time. Her vision has gotten worse, her vertigo is back when lying flat and she seems more sensitive to heat. Also, her feet and legs are cold again and she has numbness in fingers and legs. She is agitated and angry all the time. We are both reluctant to face what is probably going on: restenosis. I hate this f***ing disease. She had such a good few days and appreciated every little thing that was better--now back to square one. Thanks for everyone's good thoughts as we try to stay positive and prop up my wilting Boopie sprout.
Andrew

Sorry to hear that hoody ...

have you re-contacted the local doctor?

What are the thoughts on a 2nd procedure?