A CCSVI Patient Log: All About Steve

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

Postby Needled » Mon Sep 28, 2009 3:40 pm

Will be thinking of both of you tomorrow, Joyce and waiting for your post-op post. Best wishes for a smooth day and recovery.
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Postby CRHInv » Mon Sep 28, 2009 4:24 pm

I am so glad to hear you sound so positive. Bless your hearts. Have a great day tommorrow and know that we are thinking of you! Beth
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Postby Jamie » Mon Sep 28, 2009 4:54 pm

Good luck to you both.
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Postby CNClear » Mon Sep 28, 2009 9:48 pm

Sure will be thinking of you...both...

Lisa
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Postby CureIous » Mon Sep 28, 2009 10:26 pm

Will be thinking of you and praying for you.
Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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The deed is done

Postby mormiles » Tue Sep 29, 2009 4:28 pm

Steve came out of surgery about 11 am. It's 4:20 pm now and he's been busy with a pain low in the back of his head, being nauseous for a bit, and producing alot of urine. When he settles down, he's supposed to have a walk (hope I'm not missing it right now). He got a left and a right jugular stent inside of about the juncture of his jaw bone and ear and a stent about collar bone level on one side. He got a balloon job at the same level on the other side (just now I can't remember which is which). He's going to be ok soon I hope. I'll check in with y'all before retiring tonight.
Unfortunately, I've been busy too with my own multiple spastic natural elimination events.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Tue Sep 29, 2009 6:10 pm

Oh, Joyce...so good to hear from you. My Mom and I have been praying all day (we just talked on the phone) The pain and nausea are tough, but they'll pass in due time. Tell Steve we're all routing for him...
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Sep 29, 2009 6:20 pm

Dear Joyce YEAH!!!! woo hoo decisions done, surgery over. I pray Steve's neck is one of the fast healers.......... :D :D
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 mormiles » Tue Sep 29, 2009 10:22 pm

It's after 10 pm now. The nausea got worse, but now it's intermittent. The pain was fairly bad most of the day, but now it's completely gone. And then there was the walk---it was miraculous to us both. Now don't imagine that it was robust, but Steve was more steady and better balanced than he's been for a long time. The gal assisting him had to stop him from charging down the hall a few times. His floppy right foot even had life in it, and when he got back into bed, he easily lifted both legs for the nurse's assistant to slip a pillow under his knees.

Steve hasn't perspired in several years, but he had a pretty good sweat going when he was the most nauseous. The really goofiest thing though, is that his heavy salivation/drooling/forgetting to swallow/getting strangled problem seems to have cleared-up too---I hope that's not attributable to some medication he's had today.

Y'all know we expected nothing, but we knew there might be something. We never imagined it might happen on the first day.

God is good, and so is Dr. Dake who dropped by late this evening!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Jamie » Tue Sep 29, 2009 11:05 pm

Joyce,

It all sounds fantastic so far!

I wish Steve a speedy recovery and look after yourself too. People said that to me and I pooh-poohed it but its important!

Great that Steve has had some early relief, don't freak out if that waxes and wanes - I hope this is everything you have (even secretly) hoped for!

Love from Melissa and Jamie.
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Postby jay123 » Wed Sep 30, 2009 5:34 am

Jamie wrote:Joyce,


Great that Steve has had some early relief, don't freak out if that waxes and wanes - I hope this is everything you have (even secretly) hoped for!



Do people see improvement that comes and goes? Has there been any theories as to why?
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Waxing and waning

Postby mormiles » Wed Sep 30, 2009 7:42 pm

Bad day. In the wee hours Steve slid (literally) out of bed. The nurse found him sitting on the floor, and he didn't know where he was. He was de-catheterized just before I arrived this morning, and he was feeling great just having eaten a very good and big breakfast. At first, his bladder was passing urine, but in about an hour it stopped. A couple of hours later he had to be re-catheterized and passed 750 cc's. So now he has a baggie strapped to his leg, and he'll probably keep the catheter for a few more days.

We didn't get away from the hospital until almost 1 pm, and Steve fell down as soon as he got out of the car at our hotel due to not waiting for me to get to the passenger side of the car. Not long after we were in the room, he said he wanted to brush his teeth. When I heard the shower running, I ran into the bathroom just in time to see him fall in the tub. He hadn't placed the non-slip mat in the tub, and he wasn't supposed to be doing anything like that without my help anyway. I wanted to slap him in the worst way. He's not as stable or spritely today, so I'm figuring the inflammation from the surgery has caught up with him. So Jay, I guess waxing and waning will be the order of the day at least as Steve is recovering from the surgery.

Our flight home is at 9:45 in the morning. Y'all probably won't hear from me again until sometime Friday. Thanks everyone for your prayers, cheering, and moral support...we need it.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby CureIous » Wed Sep 30, 2009 8:27 pm

Looking forward to hearing how Steve's flight through the recuperation corridor levels out... Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Wed Sep 30, 2009 8:43 pm

Joyce-
I know I probably don't have to tell you, but be very careful with Steve and falling...the blood thinners make this even more perilous. Keep your eyes open for bruises and swelling. Just do a body scan each day to look for bad bruises or lumps that may indicate a clot. Not to freak you out...but from Marie's experience- we all learned that can be a problem.

Steve will be tired and sore from the procedure- let him know this will pass. Better days ahead! Will be thinking of you as you travel home tomorrow.
traveling mercies,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Wed Sep 30, 2009 8:50 pm

Oh my goodness Joyce! Hang in there. I will be thinking of you both on your way home. Take good care, Beth
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