Mr. Impatient

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

Mr. Impatient

Postby Loobie » Sun Jul 19, 2009 8:51 am

I know I'm a nervous ninny and am about as impatient as an ADHD child with 2 mountain dews in him, but was anyone else's experience with their legs during the first week or so that they were weak? My legs don't get tingly like they would before the operation with very little use, but they are just feeling weak. I know I just got the procedure Tues. late afternoon, but I was just curious if others felt this way also. I'm not looking for all things to improve, thought it would be nice, but my legs feel weaker today than they did for most of the day yesterday. It's not huge or anything, I'm just curious as the only surgeries I've ever undergone have all been arthroscopic.
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Postby LR1234 » Sun Jul 19, 2009 8:58 am

I am not really qualified to reply as I have not had the procedure done. However you went through major surgery and had a lot of drugs and stress put on your body. This would make ayone tired physically whether you had MS or not so maybe the current leg weakness is a symptom of fatigue.
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Postby Loobie » Sun Jul 19, 2009 9:17 am

I think you're are probably dead on. I am just ready to get on with it!! Like the title says - Mr. Impatient. The not tingling thing is a good sign though, so now maybe it's like Chris says; "it's on me to rehab myself back". Hoping that's the case.
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Postby cheerleader » Sun Jul 19, 2009 9:31 am

This recovery is going to take some time, Lew. You had major drugs and issues with them, and you're on blood thinners (which can cause weakness/fatigue) You just flew across the country and you lost 14 pounds (!) (Jeff lost five but he was eating like a horse- you couldn't eat, and that will drain energy, too)

Any healthy person that had been thru what you've been thru would be whipped. Remember my two steps ahead, two back comment? This is it...somedays you'll feel like "what did I do???" That was Jeff the first week, and without anyone to compare notes with, it was scary. His head, neck and shoulders were on fire. His comment was that with MS, "you always fear every disability is going to be permanent." So the steps back scared him. Your leg weakness today is a step back for the day, but not forever. Marie's had a really tough rehab, Sharon's was a bit better, but she has also had issues. Everyone's rehab has been different... but you're all looking ahead to the end result. At two months, Jeff's just looking at steps ahead...the ones back have stopped.

You had reflux of blood into your brain, probably your whole life...and now it's fixed. Your body can begin the healing. But it's going to take time. You're the first "Lew: right jug stent/left congenital double jug" in the history books, so no one can tell you what your recovery will look like. Just remember, blood refluxing into the brain over time was hurting you....correct drainage and no more reflux is a good thing.

Take it easy today...thinking of you-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Sun Jul 19, 2009 10:06 am

Lew -
My suggestion is to enjoy the day the best that you are able. Cheer was right on - the first couple of weeks you may experience two steps forward and two steps back ---IT DOES GET BETTER!! We have no idea how much the major blood thinners are affecting the fatigue or energy. We are on two Plavix a day --most prescriptions are written for one. In fact when my daughter went to the Walgreens in Palo Alto to pick the prescription up, they would not give it to her --they thought there was a mistake. Dake's assistant verified the two tablets a day.

This is all going to take time - we have nerves that ran alongside the jugulars which need to recover. I believe the recovery rate for a nerve is 1mm per week.

Have a relaxing Sunday!
Sharon
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Postby Jamie » Sun Jul 19, 2009 10:30 am

actually Mel had two left jugs.

no extra valve though so you win THIS time lew.....
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Postby mrhodes40 » Sun Jul 19, 2009 11:22 am

Lew I've had a really up and down ride, but here's something I can say for sure: my blood was too "thin" so I had to drop the coumadin down.

I felt GREAT.....really good, until I had my next lab and it was too "thick".... that's when I got the small surface thrombosis that has me back down on modified bedrest...it's getting better BTW.

that little journey taught me that the coumadin is not so good for us energy and function wise. I can't wait to get off of them and see what it is like.

BUT this week I am off of baclofen and requip...I do not need them any more. And still no nighttime spasms. I believe in a little while I will get stronger from this as those drugs both alleviate spasticity and cause weakness.

I fatigue really easily though. I am thinking in my case it is coumadin, blood loss (don't laugh I am covered with bruises so I am busy cleaning that up and reforming the components into blood) and bedrest.

I can't wait to get off the coumadin.... :wink:
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 » Sun Jul 19, 2009 11:30 am

I can't wait to get off the coumadin

AMEN!!
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Postby Sharon » Sun Jul 19, 2009 11:46 am

BTW Marie
BUT this week I am off of baclofen and requip...I do not need them any more. And still no nighttime spasms


I think we need to place this in perspective....How many people have started taking an MS drug (I really don't care which one) and within eight weeks are off their medication for spasticity? Most times, MS'rs are just supplied with more drugs for symptoms..... You being able to get off Baclofen and Requip (in eight weeks) is wonderful news..time to celebrate!! :)
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Postby mrhodes40 » Sun Jul 19, 2009 12:00 pm

Yeah, Bill's pretty jazzed about it. He thinks I am doing better generally. I actually am sleeping better too.
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 Loobie » Sun Jul 19, 2009 1:58 pm

Sharon wrote:We are on two Plavix a day --most prescriptions are written for one. In fact when my daughter went to the Walgreens in Palo Alto to pick the prescription up, they would not give it to her --they thought there was a mistake. Dake's assistant verified the two tablets a day.

Sharon


I think I may be different on that one as well. My Rx for Plavix says one pill per day. Maybe because just one jug has stents in it? Or maybe the proto. has changed? Who knows, I'll call Angela or Alex tomorrow and find out. I just have two places wanting me to come to work Monday. That's great around here right now, but I need to take the week off. The thought of working tomorrow hurts in and of itself! I think Joan is right, I have been so conditioned over 8 years to think that any new unpleasant thing has the potential to be permanent, and as we all know, this neck pain permanent? I'd have to figure out how to handle the morphine!

Thanks guys for putting up with me complaining and thinking in the back of my mind that I'd be running by now (OK, not so much, but I AM Mr. Impatient!)
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Postby CureIous » Sun Jul 19, 2009 2:29 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:56 pm, edited 1 time in total.
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 Arcee » Mon Jul 20, 2009 1:39 pm

I mentioned this to Lew: my Plavix scrip is for 1 pill per day also...
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Postby mrhodes40 » Mon Jul 20, 2009 2:31 pm

and thinking in the back of my mind that I'd be running by now

That's a big problem for everyone I think... :lol:
\
Lord I thought I'd perish from frustration that first few weeks with the belly hematoma keeping me down.............. telling myself I'd be jogging if only I could get up.

Mom told me Marie, a year from now the week you spent healing from that won't even be in your memory as an event. Just relax.

Thank goodness for netflix.
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 » Mon Jul 20, 2009 2:32 pm

Hmm - one pill per day for Plavix. I wonder if it has something to do with the blood testing they did on us, or maybe like Lew mentioned, the protocol has changed.

S
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