LoobieDoobie's CCSVI stuff

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

Postby catfreak » Tue Jul 14, 2009 11:02 am

catfreak wrote:
Lew,

Really glad to here your blocked

IHateMS wrote:

:lol: I think it is 'funny' that we are wishing or hoping for blockages. It just seems counterintuitive. 8O



Well, we are a strange bunch here. 8O But in a totally great way!

Best of luck Lew!! Praying right now!!!

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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Postby cheerleader » Tue Jul 14, 2009 5:06 pm

Back home in LA and praying with the fam. Love to you, Lew.
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Wed Jul 15, 2009 6:55 am

Lew,
Can't wait to hear from you. Hope you are doing great!
Terry
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Postby skydog » Wed Jul 15, 2009 7:41 am

Alright Lew I know you have the cutest nurses lined up and waiting on you, So enjoy !!! Top of the morning to you, Mark
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Postby MaggieMae » Wed Jul 15, 2009 11:48 am

Where is Lew? We should have heard something by now.
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Postby Rokkit » Wed Jul 15, 2009 12:06 pm

It's almost like we need our own live blogger at Stanford.

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Postby catfreak » Wed Jul 15, 2009 12:14 pm

Loobie Doobie Doo where are you?? :lol: :lol: :lol:

Sitting on pins and needles here!!! 8O 8O

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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Postby whyRwehere » Wed Jul 15, 2009 12:24 pm

It's a bit worrying actually, because I felt he was wanting to keep us informed. Maybe Joan could email Randi and Randi could report for him?
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Postby bestadmom » Wed Jul 15, 2009 12:27 pm

Isn't Randi having her surgery today? We do need a correspondent in the waiting room - or everyone needs to be on Twitter so the reports are kept to a minimum.
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Postby daniel » Wed Jul 15, 2009 1:08 pm

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Postby cheerleader » Wed Jul 15, 2009 3:34 pm

Lew Update:
From comments section on his blog-

It's about 10:00 here on Tues night; Brenda just called and said your Mom had called and told her how the surgery went and that you were still in recovery.

It's times like these when you realize how much you love and care about family........we're anxious to hear how you are doing!!



link to Lew's blog

I don't think Lew's near his computer yet, and Nell isn't able to post...but it sounds like Lew's family has heard from Nell and surgery went well. Thinking of you, Lew-
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed Jul 15, 2009 4:06 pm

That first day it is not so easy to get postings out. You have other concerns........... :lol: we are all wishing you well Lew!
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 Sharon » Wed Jul 15, 2009 4:19 pm

Ditto Marie - I depended on my daughter to post to TIMS -
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cute nurses????

Postby ladystewart » Wed Jul 15, 2009 4:31 pm

skydog wrote:Alright Lew I know you have the cutest nurses lined up and waiting on you, So enjoy !!! Top of the morning to you, Mark


Sorry---I am married to a MAN. Cute nurses will not turn me on!!! LOL 8)
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Postby Loobie » Wed Jul 15, 2009 4:51 pm

IIIIII'MMM Back!,

Back at home convalescing. What a ride. Mark, I have to take the title of "freak of nature" away from you. I had pretty much full on oclusion of the right jug and have two stents in there that are seperated by X distance (Dr. D. made a drawing for me which I will scan and post), but the fun started in the left side, in which he is doing nothing until my check up. Instead of having collateral veinS. I have a collateral vein the same size as the jug, and an extra valve! He was fascinated by it. He was bringing guys over and was saying stuff like "look at this extra valve!", and "it's beautiful!", and "it looks like a tulip!". He is something else. So since that vein seems to be carrying the load (the picture will show what I'm trying to say) he didn't want to screw with something that may be functioning naturally. Gotta love that.

So he wants to see if anything changes with it now that the other one is freed up. He said "I've never seen it before and didn't want to just put a stent in there if there was no need, but in 8 weeks if it's indicated we will". Discretion is the better part of valor I guess. You can't "unstent" it, so I think he made the right call. Nothing symptom relief wise to post yet since my post op was dreadful. I had to get poopy (I'm doing so good with the cussing thing :lol: ) with the nurse to get the Foley, but man am I glad I did. Thanks to Holly or Marie (I don't remember who recommended) because it was much needed. Can you say two liters after all the IV fluids? Draining off only 3-4 oz. at a time, that would have been dreadful, especially after learning of my awful reaction to BOTH of the pain meds (Perc. and Morph.). I was just fine in the supine position, but when I was up this morning, they wanted me to walk. I was like "hell yes, let's do this" and as soon as I took about 20 steps, I broke out in the worst sweat and nausea that I've ever felt. And then I kind of crashed and started shaking and didn't even want to talk, I was just kind of grunting. I was that way for 2 hours. And then they said "it's the morphine" and gave me another percocet. Well Loobie's body doesn't like that either as the same scenario repeated itself again. It was not fun.

So I call my wife since the nurses can't give out what's not Rx'd by the doc. and she says "get some Zofrum". I know I cobbled that up, so I'll verify and correct it if it's wrong. That did the trick. My wife is awesome. So I am now doing this with Ibuprofen only and may pop 1 perc. before bed. Lucky me. But now that the horrible side effects are over, I feel really good and the Motrin really is doing the trick. Not as good for the neck pain as the narcotics, but I have no headache now that I've taken it; I'm liking that.

One thing that all this delay on being discharged allowed to happen was that I got to see Randi post op. They wouldn't take me to her room during discharge, so I let the no ablas guy wheel me out (he probably understood me, but didn't want to wheel me around the hospital, just out the door), and then my Mom wheeled me right back in and we went and saw Randi. She was just out and looked good. I gave her the lowdown on what to ask for, but I don't remember hardly anything from the first couple hours post op and she probably won't either, so I'll text it to her after I get the name of that drug verified. It's mostly a nausea drug, but according to Dr. Greg Bimbly?, it works centrally so also helps a bit with pain; whatever that means!

So I just keep feeling better even as I type this, but the way I felt this morning, I'm probably just getting back to normal baseline since it's so soon. But I'm not dizzy, knock on wood. Let's hope that's the first thing to go with the bladder problems right behind!

I'm in good spirits, but everybody before me is right. This isn't a no scalpel vasectomy, this is major surgery. Eating and swallowing hurt, but it's not intolerable. I'm thankful everyone said don't rotate and look down. I haven't tried it out and don't plan to, but the heads ups are all very helpful. I'm so glad I did this, but the only thing I'm not glad about (if it turns out the my 'miracle collateral' needs fixed) even though I agree with his approach, is having to not only potentially do the procedure all over again, but to maybe have to PAY for it all over again. I have good insurance, but this isn't a cheap procedure, and let's just say there aren't too many Stanford Doc's "in network" so I have to pay 30%, as most people probably will. Mine is a PPO and this is simply out of network major medical. If we could convince a vasular doc at one of the five hospitals here in Dayton to have done this, I would have gotten it free since my wife's an employee. But on second thought I'm not so sure as this is probably not a "coded" procedure for MS. Oh well, if I get better, I really don't care as I have not much earning potential (SSDI until that pot runs dry) if I keep getting worse.

I'll post more as I recover from the procedure. One side note for people up next. When done, I couldn't raise my right arm past "bicep flexing" position. Like a moron, I didn't mention it as I just wanted the hell out of there after this morning, but I just tried it and that has passed. One other thing. If your post op is later and you're going straight away to sleep like I did, make sure they set the 'trilateral' settings for your pulse right. I think because of how I always was in shape, my resting heart rate is really low. Even in the mid 40's sometimes. Well they had the bottom range at like 55, so just as I was about to drift off about 5 times, the stupid alarm on the thing starts going off and woke me up each time; this is with earplugs in as you are not in a private room. So after I figured out what was going on (the nurse didn't; all night shift nurses want to do is push meds IMHO and she would just reset it) so I had to tell her to set the bottom range to 40.

More to come I hope!
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