Post CCSVI stenting - getting off meds safely and exercise

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

Post CCSVI stenting - getting off meds safely and exercise

Postby magoo » Wed Nov 04, 2009 7:59 am

Hi Everyone,
I am post procedure and have been lucky enough to feel real improvement. I want to eliminate all unnecessary meds, ASAP! I have no patience, LOL. :lol: I do know how distressing this can be to my body, so I'm trying to go slow. :roll:
I was on pain, anxiety, and musclerelaxant medications, which I do not need any longer (HURRAY)!!! So I have been weaning myself off of them. I was wondering if anyone has experienced this and how long it will take to get my body back to "normal"? And are there any supplements I can take during the process to help? I'm headed to the health food store tomorrow.
I also have not exercised on a regular basis for a long time. What would be a good way to start? I don't want to shock my system or hurt myself by overdoing it. I know the lack of stamina I feel now has more to do with being out of shape. I'm not overweight, just not as strong as I should be, thanks to MS.
Thanks :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Wed Nov 04, 2009 8:56 am

Rhonda, I don't know about the meds, but walking would be a good thing to start. I walk my dogs and I'll tell you, they are the most insistant partners you can have! It is really hard to miss a day with them around!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Sharon » Wed Nov 04, 2009 9:02 am

Hi Rhonda!

You seem to be recovering quite well -- it is wonderful to hear that you have weaned yourself off so many medications. There are many anecdotal stories of other "stenters" who have been able to get off their medications - hopefully, they will be able to comment.

Your inquiry about supplements - I think what is important to realize is your body has been "assaulted" so to speak. You will have inflammation in the neck area for some time. You possibly will have some nerve and muscle repair issues. And, you are on Plavix and Coumadin. I decided to take a good multi-vitamin during the two month recovery period - and that was all I took. You do not want to be taking anything which will affect your INR.

Exercise - this is so important! I'm kind of an exercise freak though so my opinion is biased. Again, you need to go at this gradually and carefully. I started back into my four day a week exercise program after the second week post procedure. I began slowly and carefully - again because of the blood thinners. I did not want to be bonking my head on weights or falling on the floor. Not knowing what your limitations are, it is kind of hard to suggest things to you -- so, generally I would say GET STARTED on something. Sign up for a class, take a 10 minute walk everyday (if you are able), buy yourself a Thera-band and use it for resistance exercise, "Google" exercise for specific areas i.e. legs, arms, core -- you will get many great ideas. Get a friend to be your exercise buddy -- sometimes you need someone to give your a push to get going.

Enjoy your new energy and your new improvements!

Sharon
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Postby magoo » Wed Nov 04, 2009 9:21 am

Beth, I do have my trusty dog, Wonderdog, who would LOVE a daily walk. Good idea!
I've been taking a multivitamin daily. Also, drinking kombucha tea and a probiotic. Okay, maybe I'm good there.
Sharon, I don't have any limitations except my out of shape body and my hate of sweat, lol!
I am not an exercise person, but I feel like I owe it to myself to use all of the new strength and energy I have been given. I have a treadmill and some weights so maybe I'll dust them off!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Arcee » Wed Nov 04, 2009 9:34 am

Rhonda, that's great that you are feeling good and getting moving. I agree with all the other suggestions, especially the dog walks! Just wanted to chime in that I was fairly vigilent during my recovery regarding safety during exercise given the Coumadin. I did a lot, but if it was remotely dangerous, like being out in the woods, I made sure to be there with someone, have a phone, a warning bracelet, bandages, etc. Enjoy your new found energy.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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drugs and exercise

Postby GiCi » Wed Nov 04, 2009 9:35 am

magoo,
I am delighted to hear about your improvement after the procedure. I have experienced the same.
I have never taken any medication because I do not believe one can treat something one does not know the cause of.
For the last 8 years I have being taking anti-oxidants every day: two capsules of Starflower oil, one of Cod Liver oil, one of Omega 3, two of Lecitine, two of Vitamin B complex, and 1 gram of Vitamin C.
I do not know whether these substances interfere with Warfarin or not: you need to check with your doctor. My regime works very well for me. As far as exercise is concerned I do some cycling (at home), some weight lifting and I walk daily along the long hospital corridors.
GiCi
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Postby magoo » Fri Nov 06, 2009 2:06 pm

Arcee, I have my bracelet and will be careful until I'm off the Coumadin. I'll hold off on bungee jumping...for a while!
GiCi, I hate the meds and have always tried to take the very least possible. They were necessary, but now not so much since the procedure!!! Hospital corridors are a good way to get some exercise. Although I hope to hardly ever see them again!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby jay123 » Sat Nov 07, 2009 8:06 am

GiCi- Have you researched the green tea extract at all? Whats your feeling on the iron removal?
Thanks!
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Safe Exercise

Postby SammyJo » Tue Nov 10, 2009 6:29 pm

Good for you! I can't wait to hit the execise mat again!

You can find lots of exercise instructions with illustrations, here is one for pre/post op

Pilates, yoga, Feldenkrais, PT exercises all have floor mat exercises where you don't have to worry about balance. YouTube has videos on all of these.

I worked with Feldenkrais the most because it is slow & low force, so can be done with fatigue. Primary focus is neurologic repair. It can be in a class with instructor, or in a therapeutic session with a practioner. Here is a 6 min video of guided pelvic clock, which can be done even in bed. Even just visualizing it while listening helps bed ridden folks keep the nervous system "awake" & in touch with movements basic to walking.
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Postby Sharon » Tue Nov 10, 2009 9:45 pm

I agree with Sammy Jo -- Feldenkrais can be an excellent movement exercise. Here is a link that explains what the Feldenkrais Movement is about http://www.feldenkrais.com/ The exercises are great brain activators. I have been taking classes off and on for about three years. The exercises are also great for opening up the tight areas in your body structure.

Sharon
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