LoobieDoobie's CCSVI stuff

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

Postby Loobie » Thu Jul 16, 2009 6:35 am

Been on the phone with Randi this morning. She did not sleep well (crazy room) but is in good spirits. I'm sure she'll post, but she'll need some sleep sometime. I can't wait for my first cup of coffee since Saturday. Neck still has some discomfort, so I'm going to take my Motrin, but woke with no headache. Another thing is that I live in what is known as "sinus valley" and I've been breathing great out here and I'm sure that has a little to do with the lack of headache.

I'm so guarded about good news. I should not have let myself get so convinced about Tovaxin. I feel like the jilted woman in a chick flick who "just can't give in to love" anymore. :lol: :lol: . Man I'm just giddy. I need to get off the 'puter and just let the day happen and see where it goes.
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Postby mrhodes40 » Thu Jul 16, 2009 6:53 am

Lew what great news! things seem to be going along apace for you. I understand the jilted attitude. I've been around this block long enough to have that issue too. :lol: :lol:

This is a good journey. In no time you'll forget what it was like to be the old you and it will be normal to sleep all night.... :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby peekaboo » Thu Jul 16, 2009 6:56 am

Giddy Loobie Doobie - isn't it a wonderful feeling? But yes we must be reserved for integrity.

have a great day an hope you discover a new and improved Lew.
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Postby whyRwehere » Thu Jul 16, 2009 7:00 am

I'm very pleased about the bladder news, though, from both you and cheer's husband. That is a big problem for people to deal with. Thanks for taking the time to write!!
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Postby Needled » Thu Jul 16, 2009 8:37 am

Lew, Your enthusiam is contagious -- keep it coming!! It's great to read good news. To hear how happy and well you're doing now is a great "upper" for all of us. Savor the moment and spread the cheer!
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Postby chrishasms » Thu Jul 16, 2009 8:42 am

123
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Postby Loobie » Thu Jul 16, 2009 9:00 am

Reminds me of the Top Chef "Offal" episode!
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Postby Jamie » Thu Jul 16, 2009 9:18 am

I'm actually biting back my enthusiasm for the change that has come over Melissa.
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Postby MaggieMae » Thu Jul 16, 2009 10:05 am

Jamie wrote:I'm actually biting back my enthusiasm for the change that has come over Melissa.


How do you compare the changes in Melissa after CCSVI as compared to after Revimmune?
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Postby robbie » Thu Jul 16, 2009 10:52 am

How do you compare the changes in Melissa after CCSVI as compared to after Revimmune?

That would be interesting to here
Had ms for over 19 years now.
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Postby Jamie » Thu Jul 16, 2009 11:18 am

Well, its difficult to compare.

She'd had a couple of bad relapses prior to HiCy and had several active lesions and a couple of black holes.

Since HiCy she's recovered all those defecits for the most part but would have flare ups caused by heat, stress or exhaustion.

Immediately after HiCy though she was at low blood counts for a while, was ill from the chemo and very weak and tired for a couple of months afterwards.

This was totally different of course due to the nature of the intervention.

Now a week afterwards she is back at work, off the pain meds and full of energy.

The fatigue had crept back after being relieved for the first 6-8 months after HiCy. Fortunately no progression occured and it really was the right thing to do at the time with early, active aggressive MS and her hating the rebif effects.

So its difficult to compare. This was a much more immediate benefit. But its very early days no chickens are being counted.

We went into this hoping for some relief from the fatigue and the heat (hottest June/July on recored in Houston) and so far she has got that.
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Postby robbie » Thu Jul 16, 2009 11:35 am

We went into this hoping for some relief from the fatigue and the heat (hottest June/July on recored in Houston) and so far she has got that.

That’s great Jamie thanks for the explanation.
Had ms for over 19 years now.
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Postby chrishasms » Thu Jul 16, 2009 1:08 pm

123
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Postby skydog » Thu Jul 16, 2009 1:33 pm

Hello Lew, Awesome post op post old buddy. It just gets better from here on out. Sounds like you are in a great place to ease back to life. I love watching the young ones, truly puts life in perspective. I can relate to the vital sign monitor going off because of low heart rate. Mine is usually in the low 50’s sometimes mid 40’s at rest. It is eighty plus degrees here this afternoon and I am tolerating it quite well. My wife is letting me off leash for fishing / catching trip in the morning. Will be thinking of you. Wishing you a speedy recovery. Cheers, Mark
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Postby Loobie » Fri Jul 17, 2009 5:57 am

I must tell you all that you were right, this is major surgery and I'm still recovering. For some reason, it is extraoridinarily painful for me to chew which has definitely cut my calories way down even though I'm hungry. The first morning after being in the hospital (next day) was the best so far. I feel like I've been run over by a truck this morning, but only woke twice last night and I did have to cath once. So no immediate results yet, but I still feel like I'm recovering. I took a perc. last night right before bed and may have a bit of a hangover from it, but the advil quit being enough last night and I wanted to sleep.

Hey, I've had this for 8 years, so I need to temper my excitement with some reality. I'm only doing advil on the plane though as I don't want another incident like I had in the hospital. I must have slept through that last night. Very confused and disoriented this AM. Will post more when I get back home. I just want to get home.
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