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

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Postby chrishasms » Fri May 29, 2009 8:40 am

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Last edited by chrishasms on Sun Dec 06, 2009 1:13 pm, edited 1 time in total.
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Postby peekaboo » Fri May 29, 2009 8:54 am

oops
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Postby mrhodes40 » Fri May 29, 2009 8:57 am

Chris I do not blame you one bit and I think that is reasonable. If you are healing why rock the boat? I would not have jumped on the opportunity to be a guinea pig for this if I did not think I was out of options.
If you decide you need this you can do it later no problem.
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 notasperfectasyou » Fri May 29, 2009 8:58 am

Chris,
I imagine that there is a certain willingness TIMS members have for trying things. Similar to you, Kim is trying a therapy and I don't think it's such a good idea to start combining things until we have some certainty about where we are on treatment A and what we think will happen on treatment B. In our case, I think we too want to see more results before starting to think about adding a CCSVI investigation to our ongoing ABX investigation. I think there is a lot of promise here, but I need to see some longer term results. I'm also formulating thoughts on this, which, if you know me, takes a while.
Ken
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Postby cheerleader » Fri May 29, 2009 9:39 am

Think that's a wise decision, Chris. This research isn't going away...and we'll know much more about efficacy and results in the coming months and years. For someone like Jeff, with multiple brain lesions and mostly brain related MS issues upriver from those closed jugulars, this procedure has been a God-send.
Keep healing, buddy!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Fri May 29, 2009 9:45 am

Mel and I were talking about this last night.

You know what, it just makes sense.

It was a frickin 'aha!' moment.

It ties in PP/SP too.

Although Mel's doing okay on hicy, the fatigue has crept back- has this stent implantation helped peoples fatigue?
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Postby cheerleader » Fri May 29, 2009 9:50 am

Jamie wrote:Mel and I were talking about this last night.

You know what, it just makes sense.

It was a frickin 'aha!' moment.

It ties in PP/SP too.

Although Mel's doing okay on hicy, the fatigue has crept back- has this stent implantation helped peoples fatigue?


Jamie...
Fatigue was Jeff's nemesis. He was always exhausted...even with provigil, coffee, green tea, etc. Read his posts (Jeff w_MS)-- he has had huge relief in fatigue, brain fog, heat tolerance and cognitive issues since having stents placed over 3 weeks ago. He had 20 lesions in his brain, and both his jugulars were closed down, narrowed with stenosis. The stents have given him correct drainage and allow the deoxyginated blood to flow back to his heart, so that his brain can get fresh blood and oxygen with each heartbeat. Are Mel's lesions mostly brain/cervical spine? Lower?
cheer
Last edited by cheerleader on Fri May 29, 2009 1:48 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Fri May 29, 2009 10:17 am

Hey,

She's exclusively brain lesions.

Optic nerve with some splashes deeper.

But the great thing about this is its a yes/no answer. Are your veins blocked? If so, unblock 'em.

It's not a 'try this for ages see if it works' thing. Regardless of the MS if your jugular veins were 90% blocked you'd get 'em fixed wouldn't you?!

If it helps the MS (and it makes perfect sense that it would) then bonus!

Jamie
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Postby chrishasms » Fri May 29, 2009 12:58 pm

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Postby Loobie » Fri May 29, 2009 1:29 pm

The only thing I keep coming back to in my mind when I get apprehensive is this: No matter what I had going on health wise, if someone could show me that my jugs and/or azy veins were blocked, I'd want them unblocked.

However, Chris, you have been through the freaking wringer in the last couple of years. HiCy, doing stuff with the Walkaide, and all that. So I can totally see why you might want to hold off until you see others' results. I mean you have trekked cross country a few times, and all that, so I would think of all people that are considering this, you would want to lay in wait before any of us. Hey, if this is it, it ain't like it's going anywhere! As a matter of fact, if this bears fruit, you could probably just have it done locally as a matter of course.
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Postby Sharon » Fri May 29, 2009 1:52 pm

Darn, Chris - I am sorry to hear about the heat intolerance creeping up on you again. You no doubt enjoyed the cooler Denver weather at the beginning of the week.

And, your decision to wait for Stanford - hey, by August you will have more answers to the questions re:CCSVI. Your body, (and your wife) have been through a lot these past months. Give yourself a break - like Cheer said, the research is not going away and we would hope that Dr. Dake will have the answers to your questions in August that he doesn't have now.

Check your PM's re: Innovative Electronics

Sharon
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Postby chrishasms » Fri May 29, 2009 5:40 pm

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Postby Sharon » Fri May 29, 2009 8:08 pm

Chris - IMHO - the doctors, who I think you are referring to, have an agenda - I am not particularly impressed with the new addition - he's got some baggage from his early days here in Denver. Enough said ----
You might be interested to know your old neuro knows that I am going to Stanford - he is waiting for my test results and wished me good luck.

Stay cool
S
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Postby chrishasms » Fri May 29, 2009 8:19 pm

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Postby Artifishual » Fri May 29, 2009 8:37 pm

I'm gonna wait and see what all this does to everybody else before I wade off into this....................................... 8O




































kidding~ still have not heard anything from Baylor. Cheer. Help here!!!! :!:
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