Round 2 post

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

Postby mormiles » Thu Sep 17, 2009 9:35 am

Lew, We know you'll post when you can, but just so you know...we're wearing this rug out!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Jamie » Thu Sep 17, 2009 10:19 am

my refresh button is worn out!
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Postby catfreak » Thu Sep 17, 2009 10:38 am

Jamie
my refresh button is worn out!
mormiles
Lew, We know you'll post when you can, but just so you know...we're wearing this rug out!


Me Too!!!!

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 Needled » Thu Sep 17, 2009 10:39 am

If I remember, he did this to us last time, too. He posted on his blog first for some reason? I can't check his blog from here, but maybe someone else can? Lew, really, where are you're priorities?
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Postby MaggieMae » Thu Sep 17, 2009 10:54 am

He hasn't posted at his blog as of one minute ago.
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Postby zap » Thu Sep 17, 2009 10:58 am

how about now?

:wink:
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Postby Loobie » Thu Sep 17, 2009 11:07 am

This post might be longer than my first post op round as I am almost pain free! I don't even know where to start since everything was almost 180 degrees from my first round. I didn't even do ANY pain meds last night. I had taken .5mg dilodid (I know I spelled that wrong) at about 6:00pm and that was it. One perc. this morning at 4:00am and it's about 11 right now and I haven't even wanted one. For one thing, the stent is much lower, and as we know smaller. There's a small signature of pain that feels like I have a really swollen gland (you know the ones your mom felt to see if you were sick). Sitting at the 'puter is no problem at all.

Dr. Dake came in this morning and I was already dressed from the waist down, shoes and all, with my gown hanging from my IV pump since all the lines had to go through the arms! He was just 'wow do you look alert'. I also feel that way, this quick, amazing. I'm already finding my words quicker, I'm just blown away. I walked 3 laps around the area I was in not 2 hours after the procedure (this time I was where Randi was; along the entrance to the hospital) and stopped in and saw Tracy (Questor). He looked like I did 8 weeks ago post op, but he was very upbeat, but I could tell he was really hurting so I didn't spend too much time in there. Everytime he would raise up to talk to me, his alarms went off and I could tell he just needed to be flat. So there I was talking to him with a catheter bag hanging from my IV pole which had 3 bags hanging from it. "Ain't we a raggedy ass bunch!" was all I could think. I saw Coach too. She will have a story to tell also, but I didn't know where she was in the hospital. She and her husband are soooo very nice as is Tracy.

On to the goods: So after finding out that he suspected my valves were not functioning, he 'went around' them and tried to get flow, and sure enough, the valve did not open. So he puts a balloon in to see what it's going to do once it's open, which BTW hurt like hell this time, and he was like a little kid. I think he actually jumped a little bit and exclaimed "that's it, there's the money shot!". The collateral just disappeared. So after having some fun with his phraseology , I pulled my hand out from under the surgery blanket for a fist bump and got promptly chastised by the nurses about the sterility and all that. I told them I was already sterile, but anyway....

Now I know I'm making some transcription errors in terms of the procedural portion of it here as you are a little goofy during the procedure, but that was basically the gist of it. I found out that last time, for some reason, I was in like an ICU lite room last time (probably just INpatient post op), and this time I was in outpatient aftercare, so there was no pulse monitor or anything and I slept like a rock for about six hours straight. I'm ready to fly home today. Last time, not so much. I ate a turkey sandwich, yogurt and 3 juices right after surgery in the room where you go while you're waiting for your actual room. Well that only lasted about 10 minutes and it was off to my room, and dinner came in not 5 minutes after I got there and I ate the whole damn thing.

So it was great, I am in high cotton right now, but I'm sure I'll come back down and find out how I really will feel by tomorrow. Right now I'm just flying high since it was such a major difference from the first time and I actually feel something (the clear headedness). I can open my mouth this time. Last time that hurt so bad I spent about a week "flattening" my food and putting it to my mouth on a fork and sliding it off with my fingers. The floor around my chair at the table resembled the 18 month olds' area. So this time I'm going to chow. I also walked out, no wheelchair. I haven't used one yet this visit, not once. It has been an awesome experience this go around and I hope I start to see some improvement, but I am going to be OK if this is where I'm stuck. I am walking very well for me and I'm thinking clear. I would still love some bladder relief, but as I've said before, make the walking better and that's not nearly as much of a trial. Seeing Dr. Dake's face when he came in was the best part. I think I caught him off guard. He just kept saying "you look great". That was pretty cool coming from him.
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Postby Jamie » Thu Sep 17, 2009 11:18 am

Lew that is wonderful.

Long may it continue!


You felt the 'IT' the difference that people have been talking about. Let's see how you stablise out now then - onwards and upwards!
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Postby mormiles » Thu Sep 17, 2009 11:22 am

Totally Excellent!!!!!!!!!!!!!!!!!

Chow down and be patient for the goodies that will come with time.
Bless you, my hero.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Needled » Thu Sep 17, 2009 11:23 am

OK, since you have such good news, you're forgiven. I'm so glad it went so well. You sound GREAT!!
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Postby skydog » Thu Sep 17, 2009 11:29 am

How Awesome Lew, Can't wait to hear more from you when your home and rested in your own space. Valves ! hope that' all that is wrong with me. Love to have it so easy for myself and of coarse Dr. Dake. I have been feeling a little like a party pooper lately. Keep on improving. Go easy ! Peace and Health to You ! Mark
Plant a BIG Garden Live in the Moment
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Postby Rokkit » Thu Sep 17, 2009 11:34 am

Freakin awesome man.

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Postby cheerleader » Thu Sep 17, 2009 11:39 am

CYBER FIST BUMP!!!!!

WHOOO HOOO LEEEEWWWWW!!!!
I love that he went up and around your bucket handle. Truly, what a miracle, Lew.
Long may you flow, my brother.
Jeff sends a cyber fist as well, and feels your pain on that balloon.
love,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Ana » Thu Sep 17, 2009 11:41 am

These are fantastic news! Thanks a lot for the long post. I guess this shows very well that you've finally made it. I wish you the very best for the future (and I believe that the "1 year" I talked about has already started for you). :wink:
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Postby catfreak » Thu Sep 17, 2009 12:39 pm

Awesome Lew!! :) :)

I am so excited for you! Like Cheer said CYBER FIST BUMP!!!!! COOL!!!

You just have to be in awe of Dr Dake and how excited he gets when he figures it out.

Rest up buddy, you deserve it.

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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