LoobieDoobie's CCSVI stuff

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Terry
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Post by Terry » Wed Jul 15, 2009 4:08 pm

"look at this extra valve!", and "it's beautiful!", and "it looks like a tulip!".

That's crazy Lew.

You "sound" great. Glad to hear it. I've been thinking of you.

Terry

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Sharon
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Post by Sharon » Wed Jul 15, 2009 4:19 pm

Great post Lew!

A collateral vein as big as your jugular? My gosh!! Isn't the human body an amazing creation?

Sorry to hear that you had a few problems with post op - now on to recovery!! Keep yourself as pain free as you can so you are not tightening any of those neck muscles. I hope your next post you will be bladder "healed".

Get some rest
Sharon

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peekaboo
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Post by peekaboo » Wed Jul 15, 2009 4:21 pm

some story Lew...I'm glad you are home, resting and were able to give us some feedback from your "Stanford experience". :arrow: sounds like a book title. Can't wait for chapter 2 :)

Holly

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Post by Artifishual » Wed Jul 15, 2009 4:37 pm

so glad to hear from you Lew!!

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javaneen
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Post by javaneen » Wed Jul 15, 2009 4:43 pm

Glad to hear that you home safe and doing well. Sorry to hear that your post op recovery was so tough. Keep your chin up (not literally as that might hurt)...hopefully you'll soon feel some MS relief.
javaneen

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coach
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Post by coach » Wed Jul 15, 2009 4:58 pm

Glad you're back to Ohio. Sorry about the rocky ride in post op but glad the problem was figured out. Take care of yourself. Keep hearing the Beatle's song The Long and Winding Road song playing in my head.

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Loobie
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Post by Loobie » Wed Jul 15, 2009 5:16 pm

....many times I've been alone, and many times I've cried".. Oh wait, I'm posting! I'm still in California until Friday at a bud's house, or should I say pallatial estate. It's an incredible place and is like recouping at a resort. And they are literally bending over backwards to accomadate my needs. I'm truly blessed to know this guy. And he has four of the most beautiful children that I've ever seen. Truly an idyllic family. I'm going to post pictures of them on my blog. You should see them, they are just what the Dr. ordered for feeling upbeat and positive. They don't have a care in the world and it's so nice to just watch them play. The 5 year old is smitten with me and it's so funny to watch. I took probably 50 pictures of their house and she follows me around everywhere I go so she's in probably 90% of them. This is really shaping up nicely as I feel SSSOOOO much better than when I thought I was going to puke with this neck. Sharon, Jeff, Holly, Mark, Mel, et al. can all tell you what that would have felt like. I can't believe I'm not sleeping. My neck hurts, but I am not tired in the slightest. I know Mel felt that way too. I want some of that! Probably adrenaline....

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bestadmom
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Post by bestadmom » Wed Jul 15, 2009 5:28 pm

Lew,

I'm so excited for you and hope to be on-board in the fall for the surgery. Enjoy your rest and your friends. You are a lucky man. Oh yeah - its Zofram - I had it w/cytoxan chemo for ms - anti-nausea pill works wonders.

Michelle

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zap
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Post by zap » Wed Jul 15, 2009 6:19 pm

Duplication of the internal jugular vein is a rare congenital anomaly. Embryologically, the origin of the internal Jugular vein is from the precardial vein. It has been postulated that, duplication may result from derangement from early development between the third and sixth gestational week 6.The common association with Phlebectasia suggests abnormal development of venous wall, possibly involving incomplete formation of the muscular layer.

Three theories have been put forward to explain duplication 2. The vascular theory is the one that is usually accepted 2. This theory suggests that duplication is thought to result from the appearance of a secondary venous ring at a lower level surrounding the spinal accessory nerve. The persistence of this secondary ring adult life may be important in the aetiology of venous duplication2. The neural hypothesis depends on the position of the spinal accessory nerve in relation to the transverse process of the atlas. The alteration of its position can disrupt the developing internal jugular vein and lead to its duplication. The bony hypothesis suggests that variation in the ossification of the bony bridges of the jugular foramen causes venous duplication. This theory does not explain the relation of the spinal accessory nerve to the duplicated internal jugular vein.
image at http://resources.metapress.com/pdf-prev ... ze=largest

added on edit: http://www.ajnr.org/cgi/reprint/25/8/1433.pdf
Last edited by zap on Wed Jul 15, 2009 7:44 pm, edited 1 time in total.

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cheerleader
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Post by cheerleader » Wed Jul 15, 2009 6:33 pm

WHOOO HOOOOO LOOOOOOO!!!!
So proud of you, Lew. You did it. The awake feeling....guess what? That stays :lol: It's called your brain on freakin' oxygen!!
Jeff got stomach sick on the table and was so afraid he was going to puke during the surgery. That would have been very b-a-a-d. Now it's time to heal. So glad your friend was able to take you and your mom in and show you such a good time. It all worked out, Lew. And I guess you get the official TIMS freak of nature trophy for "most beautiful collateral vein- with valve!" We always knew you were special. You'll probably have a whole abstract/paper written up about you! The kind of thing we all love to read around here!

Jeff says hi, congrats on your new flow, enjoy your rest and recuperation, and don't be a hero getting busy....let your body heal, and let folks take care of you. You deserve it, Lew.
xox,
Momma J
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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catfreak
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Post by catfreak » Wed Jul 15, 2009 7:38 pm

Wow Lew,

Glad you are OK! Sounds like you had a little DRAMA!! But I truly believe it will all be worth it in the long run.

I was going to make my call today and when we did not hear from you I got a bit spooked and did not call. But, I am going to make that call tomorrow as soon as they open and I can get with Alex.

Seriously Lew, there were some major prayers being spoken on your behalf the last few days. Also for Randi and Cheers friend D. My knees hurt!! :wink: :wink:

I am glad you are recouping in a great place where you can relax and rest for the long trip home.

Goodnight and sleep tight!!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

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whyRwehere
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Post by whyRwehere » Thu Jul 16, 2009 4:01 am

Thank goodness you are well. I was getting very impatient to hear something. Saw your blog; your family is also very attractive! Feel better and enjoy your holiday.

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MaggieMae
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Post by MaggieMae » Thu Jul 16, 2009 4:53 am

Loobie,

Really glad that you are through the rough part and hope you feel better each day. I too was getting a little nervous not hearing from you after your surgery.

One question. You didn't have any of the testing done in Ohio? (MRV for example). Everything was done at Standford? Just wondering since I've been trying to set up the MRV here in PA for my husband.

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Loobie
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Post by Loobie » Thu Jul 16, 2009 5:53 am

All done out West. I'm writing a post in Word right now. I had some incredible night. Only got up once to pee by myself, no cath, but it's only been one day and there is that word "anamoly" so I'll stay reserved for a little bit, but if I go out in the sun and don't get freaked out, you guys are going to hear all about it. BTW, I only took two Advil last night, and only waking up one time and peeing naturally (sans cath) hasn't happened in a very long time and I thought I'd wake up alot last night if from nothing else discomfort. I'm trying to keep calm, I really am but it is hard. This disease sucks so bad and I want us all to feel better so bad I can't stand it. Could it be?

More later after I eat. To quote a very briarish and very crass saying "I could eat the ass out of an alligator while he's still alive" I'm so hungry. Going to raid the giant Thermador at my friend's "resort house"!! I love feeling this way! Wow! Yee haw and all that. Could just be a good night because you guys know I'm a "premature poster" about when things are postive, but I hear they have pills for that now! :lol: :lol:

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cheerleader
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Post by cheerleader » Thu Jul 16, 2009 6:06 am

Lew...
wow. so good to read. You're right, it's early in the game, but Jeff had that immediate huge appetite increase and relief from multiple night time trips to pee (he gets up once, if at all now)...and he also felt awake for the first time in years. At over two months, he still feels great, better all the time, and that would be a mighty long placebo effect!

Keep track of all the things that are changing. Write about it and let us know. Safe travels back home and hug your amazing mom, wife and daughter for us.
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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