Our trip to the local vascular neuroradiolgist

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

Postby ozarkcanoer » Sat Apr 17, 2010 4:27 pm

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
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Postby CRHInv » Sat Apr 17, 2010 4:41 pm

I am so excited for both of you! Take it slow and enjoy the progress.
Keep the updates coming.
Take good care,
Beth
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.
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Postby bestadmom » Sat Apr 17, 2010 4:42 pm

Hi Andrew and Sharon,

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

Michelle
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Postby Loobie » Sat Apr 17, 2010 4:48 pm

Andrew,

This is just fantastic to read, just fantastic.
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Postby Johnson » Sat Apr 17, 2010 5:06 pm

Thanks for the update hoodyup. And boopieup, you go! Work on that left hook!
My name is not really Johnson. MSed up since 1993
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Postby catfreak » Sat Apr 17, 2010 5:19 pm

hoodyup and boopieup,

This is absolutely awesome news!!!!

Please keep it coming!

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 kc » Sat Apr 17, 2010 5:25 pm

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 :lol:
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Postby magoo » Sat Apr 17, 2010 6:47 pm

Congrats to both of you! It is so wonderful to hear about the improvements so far!!! Thanks for sharing!!!!
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 ndwannabe » Sat Apr 17, 2010 6:54 pm

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 :)
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Postby cheerleader » Sat Apr 17, 2010 7:50 pm

hoodyup wrote:I now know that what others have been saying is true: CCSVI is real, and fixing it will only improve the person's condition who has it. How could a placebo do this? If she was capable of willing herself to improve on her own don'tcha think she'd have done that before this? Neuros watch out for that left hand!

I am also hoping that by sharing these results with her doctors and anyone and everyone that it will help add to the ever widening pool of "anecdotal reports" of MS patients benefiting from the Liberation Procedure. It was by reading about other people's experiences that we arrived at the decision to have her scanned and treated for CCSVI. I look forward to reading about others who want treatment getting liberated and experiencing these good things for themselves.

Andrew


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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rose2 » Sat Apr 17, 2010 8:07 pm

Wonderful News!
Relax. Rest. Enjoy.
So happy for both of you.
Sincerely, Rose
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Postby Johnson » Sat Apr 17, 2010 8:50 pm

kc wrote: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 :lol:


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.
My name is not really Johnson. MSed up since 1993
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Postby hoodyup » Mon Apr 19, 2010 2:21 pm

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
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Postby hoodyup » Wed Apr 28, 2010 11:59 am

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
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Postby mshusband » Wed Apr 28, 2010 12:01 pm

Sorry to hear that hoody ...

have you re-contacted the local doctor?

What are the thoughts on a 2nd procedure?
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