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

Postby Sharon » Thu Nov 12, 2009 8:14 am

LR -

I am doing just fine. Thank you for asking. I will get an update posted this afternoon or tomorrow. Sorry for the delay --- I have nothing to complain about (except yesterday's golf game!) --- maybe that is why I haven't rushed to post an update.

Sharon
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Postby Loobie » Thu Nov 12, 2009 9:28 am

Hey Sharon, I re-read my post; it does look like I'm saying I was going to push it on the shoulder front. That area is definitely a no no to push. I was talking about elliptical and bike and stuff like that. No way am I going to push the shoulder until I can see my trapezius on that side. I just want to push cardio stuff and see if I can sustain effort long enough to need a shower after an exercise session!
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Postby MaggieMae » Thu Nov 12, 2009 10:36 am

Lew or someone,

Help! I can't keep this straight.
Lew you are at Stanford for a check-up.
Coach is there for procedure on 11/12. (We haven't heard anything today on how things are going?)
Mark is there to see Dr. Dake again because his symptoms have returned. Is he being retested?
Radek is there for procedure (I thought he was scheduled for 11/23).
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Postby radeck » Thu Nov 12, 2009 11:01 am

MaggieMae, I was there to get an X-ray to double check something that showed up on the MRI that's not related to CCSVI , and meet the others on the way back. I will have venography testing on Nov 23rd. On Mark, I thought he had his MRI Tue evening and consult yesterday, but not sure. Apparently he had new narrowing occurring below his stents a few weeks after his procedure.
Last edited by radeck on Sat Jan 16, 2010 9:16 pm, edited 5 times in total.
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Postby MaggieMae » Thu Nov 12, 2009 11:16 am

Thanks. Hope all goes well for everyone.
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Postby radeck » Thu Nov 12, 2009 11:17 am

bla
Last edited by radeck on Thu Dec 31, 2009 11:57 am, edited 1 time in total.
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Postby Loobie » Fri Nov 13, 2009 6:39 am

I had a really amazing trip home. Was by myself as you all know, but all you that don't get around in crowded places very well at all will love this. And the funny thing is I just did it and sort of didn't realize what I had done and almost started crying while eating my dinner!

I was walking through the Houston airport just starving. Well the one place to eat called "Real Food" just smelled so good, but it was very crowded and not just "out towards the walkway"; you had to go back into it like a restaurant. Well with awkward bag on shoulder, I got a tray of food, complete with lidless drink and walked through the maze of people that have no clue they need to give me a wide berth, and I didn't even have a spare hand to go from 'chair to chair'. I'm sure lots of you know what I'm talking about there when you are walking around stuff. I got all the way to my table and it kind of snuck up on me what I'd just done. It's not like I had any new surgery or anything, but this is about the 8 day mark with no coumadin. I think that stuff was contributing a bit to balance and dizziness issues. It was great!

And then I wanted something other than the book I was trying to get into to read. So I just went in to the little shop with all the periodicals and browsed. I don't browse! I just found myself actually shopping and taking my time. It was a very cool feeling. To not just go from point A to point B only stopping to pee or get a drink at one of the kiosks that have the checkout right out front. Now granted I'd have had to make tracks if I wouldn't have been wearing my "gear" (read my blog and you'll understand 8O ) Just a really good trip home and I hope it stays this way today because I'm off work and want to try and rake some leaves. That should be interesting since my blower died and I will be 'rollin' old school' with the rake :lol: .

So while my 'gear' (ok, it's an external cath and leg bag) was probably responsible for my willingness to just poke around in a store and not have anxiety about any line at the checkout, it was decidedly not responsible for me carrying a food tray with a drink on it through a crowded restaurant. Things were really good there and I've got nothing to blame there except that I was just flat out more steady. And lastlly, I did a whole bunch of walking and never limped. After walking all the way to my gate in Houston down one of those long gates they have 'in the round' my legs did ache and were pretty tingly but once again they felt balanced in their achiness. It wasn't all on my left side which is what makes me limp. I loved it. Good stuff all the way around for my solo travel stint to Cali.!
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Postby ozarkcanoer » Fri Nov 13, 2009 7:10 am

Fantasticc !!! :D :D
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Postby bestadmom » Fri Nov 13, 2009 7:28 am

Amazing. Your improvements give me so much hope. I can't wait for the next chapter.
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Postby LR1234 » Fri Nov 13, 2009 7:37 am

Amazing Lew!!!! so pleased for you xxx

Sharon, I look forward to the update, hope you are doing well xx
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Postby Sawdoggie » Fri Nov 13, 2009 7:43 am

This all sounds great! Let me know when you are ready to come down for a Bengals game!
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Postby Arcee » Fri Nov 13, 2009 7:45 am

Lew, walking around a Texas airport is no small feat - congratulations! Enjoy your day off with those superhighway jugs (jugular veins)...

EDIT: added "jugular veins" as am trying to be more mindful of the request to use complete phrases as there are more people reading who may not be familiar with American slang, or our special version of American MS slang :D
Last edited by Arcee on Fri Nov 13, 2009 8:17 am, edited 1 time in total.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby Rokkit » Fri Nov 13, 2009 8:07 am

Yeah man! How does it feel to be the poster child for something good! Just imagine, now that your accessory nerve is healing up, you're one of the few with the "maxi-stents"! You'll always have the mega super highway. The rest of us will just have plain old country interstate. :-)

So glad you're feeling better. Erika's already feeling better. It seems that so far at least from admittedly subjective/antectdotal standpoints, almost everyone is at least feeling some better. I haven't heard anyone say they are worse. Tracy had a rough go, but things seem to be going better. Hopefully Dr Dake can get something going for Mark (skydog) and we can have one big happy party!
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Postby Loobie » Fri Nov 13, 2009 8:16 am

Rokkit wrote:Hopefully Dr Dake can get something going for Mark (skydog) and we can have one big happy party!


I hope this is so true. I actually told Dr. Dake "I know you always do, but pull out all the stops tomorrow morning". Mark is one of the nicest men I have ever met and if you meet him even for a short period, you will come away inspired to do better.
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Postby radeck » Fri Nov 13, 2009 9:03 am

Sounds like a great trip back!

Mark had procedure yesterday at 3, I think. I hope that Dake was able to re-establish flow through his lower jugular veins...
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