I started a blog

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

Postby Jamie » Wed Nov 04, 2009 8:34 pm

Great post as usual Lew.

Can I make a request though?

It's sometime (especially the first part) a huge block of text not broken up. Difficult to read sometimes, can you tab it out a little?
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Postby SammyJo » Wed Nov 04, 2009 8:48 pm

WooHoo Loobie! That is so cool someone from TIMS will get to see the inside of Haacke's project. They are watching us too, there are several links to to the TIMS tracker and other posts at
http://www.ms-mri.com/links.php

And now talk of bringing in an IR to fix what they find on the MRIs, this is great news.

Thanks for your blog update, my ass is pretty baked too right now in recovery mode from the stent procedure. I like seeing where I can be in a few months, following in your footsteps.
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Postby Loobie » Thu Nov 05, 2009 4:31 am

Jamie wrote:Great post as usual Lew.

Can I make a request though?

It's sometime (especially the first part) a huge block of text not broken up. Difficult to read sometimes, can you tab it out a little?


I was thinking about that as well. I just get to rambling on and forget to paragraph!
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Postby schnittke » Thu Nov 05, 2009 6:17 am

Hey Lew, can't seem to locate the link to your blog any longer. Probably just the poverbial snake thing.
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Postby CRHInv » Thu Nov 05, 2009 7:43 am

Here's the link: http://myhopefuljourneyintoactualmsrecovery.blogspot.com/

Lew, that was really handy when it was in your signiture line!
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 Loobie » Thu Nov 05, 2009 9:07 am

It got messed up yesterday and was making the page really wide like when someone doesn't size a photograph right. I'll get it figured out.
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Postby Loobie » Thu Nov 05, 2009 9:10 am

Just typed it in like I did the first time and it's till doing it. Not sure why since it's the exact same thing that was always in there.
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Postby Sharon » Thu Nov 05, 2009 9:24 am

Lew - I think there are some "gremlins" in the TIMS. I am no longer getting the email updates when someone answers to one of my posts, nor do I get an email telling me I have a private message......NHE - where are you? I will send him a PM.

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Postby bestadmom » Thu Nov 05, 2009 10:00 am

I'm having the same problems with not getting the email notifications. I figured it was me.
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Postby Sharon » Thu Nov 05, 2009 11:00 am

I have sent NHE a private message - also started a thread on the lack of email notifications
Post on the thread you are having a problem so he knows it is more than just Arcee and me. :roll:
http://www.thisisms.com/ftopict-8646.html

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Postby Rokkit » Thu Nov 05, 2009 11:28 am

Lew, do you know if Dr Haacke will be looking at your spinal cord too or is it brain only?
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Postby Loobie » Thu Nov 05, 2009 1:07 pm

I'm not sure. I've only exchanged a few emails with him talking about getting scheduled after I get back next week. I want him to definitely look at my spine. The disparity between Z and D in terms of azygous involvement has bothered me since the word go; especially since most of my 'lesion involvement' has been spinal. I was dx'd with Devic's for the first X years since I had only the triumverate of that disease; ON, bowels, bladder and also 0 brain and only spinal lesions. However, my neuro. at the time changed it as I had 7 cranial lesions pop up during a relapse.

But as far as the SWI from Haacke, I don't know what he wants to look at, but I'm sure it's cranial. I'll ask him about the spine though, but I really don't have any idea until I ask him. I'll be sure to let everyone know once I find out.
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Postby radeck » Thu Nov 05, 2009 1:17 pm

Lew, as you mentioned the apparent disparity between Z and D concerning the azygous, I was wondering about whether part of the difference could be due to the fact that Z looks at a combination of factors including reflux, while D gathers all of his info from imaging. When Z says that the majority of his patients had azygos involvement of some sort, that doesn't necessarily entail that all of them had visible stenosis there. I'm sure Marie or Joan can clarify if I'm missing something...

Concerning your spinal lesions, I agree this is curious. Apparently there are long re-routes the blood can take once the jugulars are closed. The crucial question is whether it can go as far as the area of your lesions/iron deposits.
Last edited by radeck on Sat Jan 16, 2010 9:27 pm, edited 1 time in total.
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Postby Loobie » Thu Nov 05, 2009 2:09 pm

radeck wrote:Lew, as you mentioned the apparent disparity between Z and D concerning the azygous, I was wondering about whether part of the difference could be due to the fact that Z looks at a combination of factors including reflux, while D gathers all of his info from imaging. When Z says that the majority of his patients had azygos involvement of some sort, that doesn't necessarily entail that all of them had visible stenosis there.


I agree, but I was just going to ask him if the SWI was capable of showing iron build up in the spine like it does the brain. I totally think that's it. After watching a Youtube (I think it was Rici's vid) of the azygous procedure, I couldn't help but notice how small of an area was actually stenosed. Just makes me go hmmmm. I mean the way my diagnosing neuro. explained it to me was that bladder and bowels, and also bilateral leg issues, are the work of spinal lesions and affect everything "below" the lesions, so I know I've go major spinal involvement. But as you point out, that's not necessarily saying it's not due to blood flow out of the jugs.
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Postby Loobie » Sat Nov 07, 2009 11:14 am

I just updated again. My fingers must feel good; two updates in four days!
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