A CCSVI Patient Log: All About Steve

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

Re: Waxing and waning

Postby NHE » Wed Sep 30, 2009 11:09 pm

Hi Mormiles,

mormiles wrote: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.

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.


The abrupt apparent change in Steve's neurological status may be of concern. Do you think that this was due to the anesthesia? If not, then it may be prudent to have a consult with a doctor there at Stanford before you leave just to cover your bases and make sure that everything is ok.

NHE
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Postby ErikaSlovakia » Wed Sep 30, 2009 11:58 pm

I pray for Steve!
I do not have much energy these days, but I send him 50% of mine. I have got it from the USA anyway.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby whyRwehere » Thu Oct 01, 2009 4:28 am

I agree with NHE...is Steve forgetting, not understanding, or just being obstinate when he tries to do things on his own....if it is one of the first 2, he should be evaluated further.
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Postby CNClear » Thu Oct 01, 2009 7:12 pm

saying prayers for Steve...

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Postby Sharon » Thu Oct 01, 2009 8:16 pm

Joyce and Steve - Be careful out there! Steve is on pain medication - maybe his body he reacting to that - making him weak or off balance. He may need to change the medication. Take care on your way home - use everything that is available to you - wheelchairs, porters, etc. I will be thinking of you and looking forward to your posting once you get home.
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Postby Loobie » Fri Oct 02, 2009 3:49 am

I felt like a boneless chicken for days after the first round. Just as you describe; weakness, wobbliness, and unsteady as hell. He's pushing it, sit on him! And when he gets home, no rototilling during the first week! Seriously, this is exactly what happened to me except the urine part. After they de-cathed me I was so excited I wanted to get right up, well I had to stay for about 4 more hours because I was just still spinning from trying to "get going". It was all the drugs and stuff. He def. needs a few down days.
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Postby MaggieMae » Fri Oct 02, 2009 6:44 am

We haven't heard from Joyce about Steve, nor have we heard from Cindi (Catfreak) in a couple of days. Hope everyone is okay.
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Postby mrhodes40 » Fri Oct 02, 2009 8:52 am

Man, Joyce. Keep him under wraps NO FALLS. a knock on the head can be lethal because it can bleed inside with the coumadin. If you are on coumadin and get a whack on the head you are supposed to talk to a doctor and get checked out--maybe even a CT scan to make sure there isn't a bleed.

This is the thing that terrifies me, the more disabled crowd are NOT very good candidates for coumadin. We have to be 10x more diligent than normal. I used my rollator to make sure I didn't fall. But if you have MS and have reached a certain level, ordinarily you DO fall, it is part of your life as you try to keep active and moving, the challenge is making SURE that you do not do that while on thinners. DO whatever it takes Joyce get a rollator if you don't have one...

Dear Joyce I pray for you both....
Marie
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
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Postby jay123 » Fri Oct 02, 2009 9:07 am

How long do you ned to stay on the thinners?
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Home now

Postby mormiles » Fri Oct 02, 2009 9:19 am

Our travel day yesterday was long and tiring, but Steve was very well-behaved and not hard-headed at all. Since the surgery, he's staying awake almost all the time until retiring. He seems to be walking just slightly better than before the surgery, and he looks more alert even though he claims intermittent fogginess. Steve is also having intermittent pain in his throat and the lower back of his head. I suspect that using the Percocet is dampening more than just the pain, like causing patchy fog for instance.

Steve has pink urine this morning, so I called his urologist's office. A nurse told me that a little blood was not uncommon when catheterized, especially when taking blood thinners and anticoagulants. We went on to discuss how much was too much and where to go for help at what time of the day and so on. I just solved a pesky little problem having to do with suspension and stabilization of the little urine bag, and it's working out fantastically---bicycle shorts! They're slick enough not to bind him in bed or in clothes, and they're tight enough to stay in place and to support the weight of the bag. I just turned the hem up at the right level and safety pinned the bag to the bottom of the "cuffed" shorts leg through the holes at the top of the bag. This sounds like a small thing, but the lack of stability may have been contributing to the blood in his urine.

At this point, I'm not worried about Steve's wavering neurological condition. After all, he did just have surgery, and symptoms related to inflammation should be expected.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Fri Oct 02, 2009 9:29 am

2 months... 8O No falls careful, careful for 2 months. I personally reduced my normal activity to only what was necessary outside the house. I did little grocery shopping etc.... just to reduce the risk. I walk with a cane usually and fall probably once a month.

About a month before surgery, I rolled off my exercise ball, caught my arm in the cord to the playstation and pulled it down on my head which bled profusely into a puddle on the floor as I lay there for a few seconds taking stock of my then jangled and shocked self. If that had happened on coumadin aside from the job of stopping the scalp bleed (heads bleed so much) I would have had to go to thee ER to get a CT and a check out to make sure there was no bleed inside.

As it was I hid my accident so not to freak out my darling....
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 MaggieMae » Fri Oct 02, 2009 10:06 am

Glad to hear from you, Joyce, and happy that you are home safely.
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Postby Sharon » Fri Oct 02, 2009 10:44 am

Joyce and Steve - home safe and sound - this is good news! Heed Marie's advice - Steve needs to be very careful.

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Postby mrhodes40 » Fri Oct 02, 2009 1:21 pm

Whew I am so relieved that you guys are OK. I fretted myself silly at PT over it...checked for your post the minute I got bac. I am glad Steve is doing better. I like the bicycle shorts idea too, that is a great solution to a pesky problem..love it :wink:

You are over the hump now let's hope that now you are home the countdown to the day Steve is off coumadin feels fast and easy! :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 catfreak » Fri Oct 02, 2009 7:59 pm

Joyce and Steve,

It's so good to hear you are home safe and sound.

I remember the travel day all too well. It was worse than the surgery. I couldn't stand the light coming in the airplane window and sat with my huge sunglasses on the whole flight. I guess those around me thought I had a hangover or something. David kept saying "look out the window, look out the window" and I just wanted to be left alone and lie down which ofcourse is impossible on an airplane that is packed full.

Steve, I am just glad you have had the procedure and you can start recovering. Please be careful while on the coumadin.

Joyce, make that man mind!! He will want to do things he don't need to do (Loobie!!). From now on when we do stuff post op and it;s a bad thing we can just say we did a loobie!!!!! 8O 8O

Please you guys take care and we will we watching for updates.

Cat
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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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