Terrible news.

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

Terrible news.

Postby Bruce11940 » Mon May 31, 2010 2:25 pm

I am a faithful follower of Loobies blog. In fact whenever I need a little "pick-me-up" I often will read his posts.

Unfortunately it seems things are headed in the wrong direction for him currently. I will let his words speak for himself...

http://myhopefuljourneyintoactualmsreco ... gspot.com/

As much as it pains me so say...I am afraid I can't hang my hopes on CCSVI any longer. Good luck to everyone. -B

p.s Loobie, if you are reading this..thank you for your courage and honesty. You have been a true inspiration for me.
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Postby LR1234 » Mon May 31, 2010 2:28 pm

This is terrible news and I am very sorry to hear Lew is having issues with weakness in his legs again:(

His other symptoms are unchanged and still seem to be ok.

I think we have to wait for his follow up with Dr Dake to see how his stents are looking.

Lew stopped Tysabri medication after he had the CCSVI operation and my feeling is that maybe we need to stay on the meds until we know the true impact of CCSVI. It may be a case of CCSVI and meds together to beat this disease.
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Postby mshusband » Mon May 31, 2010 2:44 pm

I notice he had nothing done to his azygous at the first treatment ... this seems to be the tricky one (according to both Dr. Sclafani and Dr. Zamboni) ...

maybe it is the cause of the latest issue now ...

We'll see how this plays out ... I'm confident Loob saw the results, and something changed now ... so they just have to find out what ...

He'll be the first to tell you it wasn't placebo for 9 months though I'm sure.
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Postby 1eye » Mon May 31, 2010 3:47 pm

Actually, folks, it just occurred to me: relapse after CCSVI, when it is unexpected, is to me another strike against placebo effect. Especially if it can be fixed by fixing a restenosis. Also, I have heard recently of thrombosis around a stent. This would be even more need for fixing. Also, I believe Dr. Zamboni who has made a connection between disability and the azygous vein. I hope this is the source of the progression, and that it can be identified.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Terrible news.

Postby eric593 » Mon May 31, 2010 3:47 pm

Bruce11940 wrote:As much as it pains me so say...I am afraid I can't hang my hopes on CCSVI any longer.


Why on earth would your hopes be hung on the outcome of a single person???? Isn't that a bit ridiculous?

There are quite a number of people who have seen no results, or only temporary improvements, or some have worsened too, like Loobie. I think the more realistic we all are, the more aligned our expectations will be with what the outcome is. It just makes it harder for people to even admit when things aren't the way they would have liked when expectations and hopes are unrealistic because we haven't heard the unhappy endings.

We do everyone a huge service by being honest and critical about the results and when no one hides poor outcomes. After all, a lot of people are spending a lot of money on the possibility of a good outcome built almost solely on word of mouth results. People who care about other MSer's need to be as honest as they can about their results. Some people are putting their entire financial lives on the line for this.

Loobie, I salute you for your honesty, and I'm sorry that you're struggling right now. I hope Dr. Dake has some positive answers for you that ease your mind and maybe even turn your situation around. Thanks for your honesty, we all need to know even the results that aren't what we want them to be.
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Postby Lyon » Mon May 31, 2010 4:10 pm

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Postby nicko » Mon May 31, 2010 4:15 pm

Why is this terrible news? Others have had relapses and have gotten worse after the procedure. But seriously all have had some benefit. Maybe they had a re-stenosis. Maybe more veins are involved. Maybe we need to be on drugs for life. Who knows, but to lose faith because one person got slightly worse, I dunno sounds silly to me.

To be honest though, even if ccsvi treatment only showed temporary benefits I would still go through with it. Temporary benefits are better then no benefits. With the downward spiral of this disease even a short break is welcomed.
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Postby mshusband » Mon May 31, 2010 4:34 pm

Plus don't forget he says he's STILL better in all those other areas. It just seems it's a new area of concern for him (leg weakness).

To me that spells something new in an area that will be able to be explained by CCSVI too ...

We'll see though ...
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Postby IHateMS » Mon May 31, 2010 4:48 pm

the new symptom could be from an existing lesion... the damage does not necessarily appear immediately.

i have not had the procedure.... i have only two c-spine lesions... since 1998 (nothing new), yet my condition continues to deteriorate. i am classed as relapsing progressive...
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Postby Donnchadh » Mon May 31, 2010 4:54 pm

As someone with progressive MS, the best outcome might be just not to get any worst post-procedure.

There were decades of accumulated iron deposition; it would seem reasonable to me that the body would have to take time to repair the damage. And that's assuming the damage is reversible-it might not be.

In my own case, I did experience dramatic improvements in just a few days but lost all of them when my IJV's re-stenosis.

It's great to be hopeful but we also need to be realistic.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby HappyPoet » Mon May 31, 2010 5:26 pm

Loobie,

You'll figure this out, and you could never be green with envy.

Wishing you the best,
~Pam

~~~~~~~~~~~~~~~~~~~~~

Bruce#s wrote:As much as it pains me [to] say...I am afraid I can't hang my hopes on CCSVI any longer.

Okay. Bye, Bruce!
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Postby blossom » Mon May 31, 2010 8:41 pm

I AM PPMS FOR MANY YRS.AND I STILL WANT THE TREATMENT. WE ALL ARE SO DIFFERENT. THE MORE PEOPLE THESE DOCTORS GET TO TREAT THE MORE THEY WILL BE ABLE TO FINE TUNE THESE PROCEDURES. THESE GOOD AND SO MUCH APPRECIATED DOCTORS ARE REALLY JUST GETTING THEIR HEADS WRAPPED AROUND THIS WHOLE THING. ONCE THEY ARE ALLOWED TO PROCEED I LOOK FOR THINGS TO DO NOTHING BUT GET BETTER. NOONE EVER SAID THIS WAS A "MAGIC BULLET." I FEEL CTOS WILL EVENTUALLY BE BROUGHT INTO ALL OF THIS AND WHO KNOWS WHAT ELSE. I REALLY APPRECIATE READING THE GOOD AND THE BAD THAT YOU ARE WILLING TO SHARE. HOPEFULLY WHEN YOU GET CHECKED OUT THEY WILL ALREADY HAVE COME UP WITH SOME NEW IDEAS. HANG IN THERE!! IT IS FAR FROM BEING OVER.
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Postby mmcc » Tue Jun 01, 2010 6:11 am

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Postby cheerleader » Tue Jun 01, 2010 8:17 am

Hey all...
Lew is a real guy. Can we please stop speculating on what's going on in his life? He'll update us all thru his blog or private e-mails. The best thing we can do for him right now is keep good thoughts going, and be there to encourage him and let him vent if he needs to. He was the first person to welcome me to TIMS, and has always been big-hearted and thoughtful around here. His recent leg weakness simply sucks...not because of the research, but because it's Lew. CCSVI treatment is all new territory, and Lew and my husband and a group of real human beings took the first steps into this procedure. Dr. Dake told them-he didn't know how this would affect their MS--he was treating a venous disorder. And this still holds true. We don't know what we don't know.
And Lew...if you're checking in, we all got your back-
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby lucky125 » Tue Jun 01, 2010 10:28 am

Remember, the great news is that he is going back to see Dake for a full review.

I am confident that they will find a cause for his worsening symptoms. But I've always been the optimist.

Lew, are you flattered or freaked that you spawned a whole thread?!?

Hang in there! Clearly, a lot of people care.

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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