Marie's Stents CCSVI

Tell us what you are using to treat your MS-- and how you are doing.

Postby LR1234 » Thu Oct 15, 2009 9:04 am

I am so pleased for you Marie!!!!! Maybe you could also be giving your body some nutrients to help it heal quicker i.e enzyme Q10, B vits, etc (see Terry Wahls book) The quicker the better:)

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Postby Loobie » Thu Oct 15, 2009 10:04 am

mrhodes40 wrote:I believe this will help a great deal.

Skeptics will probably point out that by adding a new device to my regimen I totally messed up any stent results I might have--like maybe I'll walk without a cane in 6 months would that be credited to stents or to bioness? But the point is that I tried to use a FES device last spring but could not use it because I was too disabled --that is the point.


Marie,

As far as that goes, we did our altruistic part by having this done even though we're progressive. So now it's be selfish time. WHATEVER it takes to get some life back I'm going to do. I started LDN about 3 weeks ago and I could give a rat's patoot if I start feeling better from the LDN or the stents. Like Joan always says, "let the healing begin". If there's anything that we can use to hasten that process, let's do it!!!

I am taken aback reading this thread. You are my screwed up shoulder buddy and I put a lot of stock in our correspondence and always, always place high value on your advice. So reading this has me crying too. At work to boot 8O , good thing I have a door! Seriously, just putting my cane up was huge, but to be able to walk with good posture and not have the frankengait had to be just ginormous. Now it may be on you to strengthen, and if I know you, that's quite all right with you!! Way to go.
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Postby Sharon » Thu Oct 15, 2009 10:26 am

Marie -
It's ON alex, you n me Seriously if I could even snowshoe a little I'd like that, just to get out there some

May I invite myself to the ski party. We have beautiful skiing here in Colorado - I will host the event. I so wanted to strap on skis last winter when I was at Copper Mtn with family. I would love to ski with the grandkids.
Sharon what a great report, do you mean WITH the walkaide or without it? And can you quantify right on this thread since we are talking about it here what issues you were having with the walkaide before stents? was it only spasms?

I bought the WalkAide in November of 2007 - it worked great for me (except those darn stairs!). Last winter I started have trouble - I thought it was the WalkAide so I went back to the technician to have it recalibrated. She retested me and found that my walking stride had improved (it was longer), and I was walking a mere second or two faster. The WalkAide was adjusted to my new test parameters. Well, I was still having problems - things were a little better, but I would get the Frankenstein walk - I think my leg was stiffening. This was not with every step - enough though that it was really bothersome. You are correct Marie, I was worried about my trip to China - I knew there was going to be alot of walking. To be honest, I really did not understand that I was having leg spasms -- my leg did not jerk -- I never felt anything. It was my physio/massage therapist who noticed what was happening. I went to Stanford and had the procedure and within a week or two I noticed that the WalkAide is working better. Everyone is noticing that my gait is much smoother - I realize the stiff leg thing isn't happening. It had to be the positive outcome of the procedure. Marie, you and I have had similar MS etiology with the symptoms. We just gradually got worse over a period of time - ---I think that I was in the midst of a relapse prior to the surgery and I did not know it. Remember, I also had the unexplainable lower right side backache which disappeard immediately after the surgery -- Dake still shakes his head at that one!
you wrote
but now that trend has reversed?
Yes, yes, yes! I rarely wear the WalkAide around the house anymore. This is not to say that I walk like a model :lol: --- I am on familiar ground and I feel confident that I am in control of my walking. I still have my foot drop, the ankle does not flex the way it should, I still limp a bit -- this is okay with me because I want to exercise not only my brain but also the muscles without the use of the WalkAide.
You wrote:
Skeptics will probably point out that by adding a new device to my regimen I totally messed up any stent results I might have--like maybe I'll walk without a cane in 6 months would that be credited to stents or to bioness? But the point is that I tried to use a FES device last spring but could not use it because I was too disabled --that is the point.

We were not in a formal study at Stanford - let the skeptics ramble on. You are the important person here -- let's remember who stepped up to the plate to pioneer the CCSVI theory -- it was us -- not the skeptics. Actually, I think the skeptics are late to the ball game with the new TV and press releases coming out from Buffalo.
Now that you have your Bioness, you are going to find muscles that you forgot about. The gluteus maximus :roll: you may actually start to feel that you have one! Watch the shoulder - try not to tense it as you walk.

Again, Marie - hugs to you - this is such great news.
Sharon
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Postby CRHInv » Thu Oct 15, 2009 10:27 am

I'm with Loobie and LR. I am sooo happy for you and could care less about what the improvement is attributed to. I can't wait to hear more about this as you get stronger. This is such great news!
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Postby mrhodes40 » Sat Oct 17, 2009 4:37 pm

Thanks everyone! My bioness is coming sometime in the next week or so it had to be ordered.

Sharon skiing in CO sounds great!! But I am afraid of cold spasms so probably a little bit of fire and picnic in the snow while dressed in my no longer stylish but super cute ski suit is about my speed, as long as it had great food! I will expect even glutes to wake up then that is kind of what I meant about the extra muscles suddenly making themselves known

It is interesting that we both had that difference in spasm and how it impacted the functional elec stim (FES) .

I wish I could be a pure science experiment, but I can't it is clear. And I will enjoy my bioness for sure. I am going to buy SHOES---Girly shoes, first thing............not ortho shoes that can take the AFO or x-strap. Girl shoes that can do a dress. I may have a bon fire and burn up the old ones---nah I wouldn't do that to the environment.

Lew, fellow shoulder sufferer we'll get through that too eh?
Thanks everyone for the good wishes........... :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
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Postby CRHInv » Wed Nov 04, 2009 8:44 am

Hey Marie!
How is the bioness? and the girly shoes? Hope it is all good!
Beth
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 mrhodes40 » Sat Nov 07, 2009 1:18 pm

Well, Beth I am glad you asked, I got it Thursday and have now had 2 days to use it.

They have a strict training schedule, only minutes a day at first for two reasons one is muscles that have not been used and 2 is the skin can break down if you do not give it enough time to toughen up to the electrodes.

SO.

Thursday I used it at the clinic then was permitted to keep it on to go to a restaurant on the way home. My leg muscles fatigue still even with the stimulator, so it was a little troublesome at the restaurant--kind of draggy. but it was nice to have this instead of an AFO or an X strap on, it feels more natural, and it woks better than the AFO and about equal to the strap to keep the toe from tripping me. And no pain! the AFO hurts my foot and the strap hurts my ankle after about an hour.

Friday I read the instruction manual--apparently the skin problem really sets you back, if you disobey the schedule and get a rash you have to put your ness 300 away until it is TOTALLY gone after a month or so, then you get an even slower ramp up schedule, so I decided to for once in my life really be good and not impatient...rehab patience is not my strong suit. :oops:

Training day number 1, Friday, I was to use it for 15 minutes so I strapped it on and using the rollator for support to be SURE, I walked a figure 8 in my living room around the couch then around the island the whole time. At the end the muscle that was stimulated was very achy sore like I'd overdone it at the gym and I felt out of breath, tired and I had had to increase the stimulation level (how hard it zaps you) two times in that time frame to keep the foot from dragging. Clearly you can still get muscle fatigue even with an electric stimulation--thus the training schedule to build up. I was glad I had the rollator because as that muscle fatigue kicked in, the shoe scuffed the floor.

The day I walk with no rollator, freestyle, I will post; that will be a big day, and I look forward to it! I will be envisioning it as I go along to boost my commitment.

Day 2 was today I walked for 20 minutes and again felt real fatigue by the end. I have walked no more than a few steps at a time for at least 18 months, 20 minutes feels like miles to me. I was thinking -as I walked my figure 8 loops- about Sharon who golfs with the help of her Walkaide and wondered if I would even get there, but I reminded myself that muscles strengthen with exercise, that is just what they do.

I can see this is going to be like any physical therapy, harder than you wish it was and slower to progress than you'd like, but I am actually pretty good at rehab...

I had a deep seated sense on day one that this will work and given a long time span, perhaps a year, I will be able to get out and do much more, but that it is good not to make big plans until I have successfully discovered my limits so that I am familiar with how long I can reliably walk and how much rest I need before I can go again etc. I believe this is going to be a totally new way of relating to my functional limits, and I just do not know what that will be like yet, even though I speculate constantly about how it will turn out (will I be able to walk as far as I want maybe??? Maybe I can even do hills...or walk my doggie outside.... or maybe it will be just like an expensive AFO, still limited??...I wonder how limited?? what's it gonna be like???? HAH!)

umm did I mention impatient? :oops: :lol: :roll:

Spasm wise my spasms are still evolvoing and changing less and less all the time with regards to flexor spasms, the type of spasm that pulls the limbs up uncontrollably. I do not get these at night any more and do not take meds. The other night I woke up and just lay there noticing how wonderful it was to have such a quiet body that is at rest.

I still get extensor spasms, that deal where you wake up in the morning or when you stand up from sitting in a chair and stiffen out for a second, but that too is evolving still and is milder than it was.

Sleep wise, I sleep deeply and wake less often and even if I go to the bathroom I go right back to sleep. And I dream at night too. The sleep is a completely different experience with no flexor spasms and also the natural character of it now.

My neck continues to heal, the shoulder blade is far less displaced than it was as the nerve gets stronger and the correlating muscle gets stronger and holds it down as it should. I still have fair neck pain, esp if I type, I have been trying not to type so much...

hard for me: I have loquacious fingers :lol: :lol: :lol:
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 » Sat Nov 07, 2009 3:16 pm

All good is you ask me. Nothing went in the wrong direction, and I've learned that that in and of itself is a victory. Just keep swimming, just keep swimming..... I know you'll get it eventually!
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Postby CRHInv » Sat Nov 07, 2009 4:08 pm

Thanks for the update and thanks for the great detail! I think it all sounds good and I am so glad you are taking it slow like they recommend, even though slow sound awfully tiring. Keep us updated, I really think those muscles are going to come right along. I guess like other physical therapy, it stinks while your doing it, but it is easier the next time

Hey thanks for the new word too, loquacious!

Keep up the figure 8's!
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 mrhodes40 » Sat Nov 07, 2009 7:49 pm

Thanks Lew and Beth!! It is so nice to have cyber friends!!
:D
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
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Tue Nov 17, 2009 3:34 pm

Well now I have had stents for 6 months now. I have a bunch of things to report .

First the spasticity continues to change and reduce. In fact, my physical therapist who is helping me with my neck and who I have been working with for 3 months now commented this morning on my lack of any spasticity doing my "all fours" exercise.

This is how it was 3 months ago: I'd be standing next to the PT table and angling to get on it to get in all 4's position so I can extend my legs straight out behind me in an exercise those PT people like. I'd get my good leg up there, then the bad leg would stiffen out as I tried to bring it up, banging the knee into the table for good measure. Then as it would relax over 5 seconds, I could gradually, awkwardly, get it on the table, but as I'd try the exercise I would get another spasm all over; back arched I'd have to ride it out for 2-3 seconds before we could move on. About 1/3 of the time a change in position/movement would re trigger another spasm like this. I would declare "SPASM!" and we'd all wait until it was over.

this is how it is now: I get on the table and do the exercise, I move flexibly and smoothly aside from the still profound weakness in the right leg which requires some creativity to work with. I do have a slight FEELING of spasticity in trying to work, but my movement appears noticeably smooth and we never stop for any spasticity.

For years stretching my muscles has resulted in spasms, I can stretch any muscle and not have that response now unless I stretch very hard. For example, to go from standing to a squat position requires stretching of many muscles (hams, calves, quads) and as such it used to result in a fierce spasm so I'd fall over onto my knees then forced out flat on my face on the rug. I can do that now squat down, and linger there so the muscles get a good stretch; I'm not strong enough to stand back up without help from a chair but that's OK.

I can lay on my bed and drop my leg down to do a psoas stretch with no flexor spasm pulling my leg up also. Haven't been able to do that for at least 3 years.

Notice that at 3 months post stent surgery I still had noticeable spasticity that impeded my ability to do the exercise, but at 6 months it is nearly gone.

I'm sitting in a chair to type I just got up to check and sure enough no spasm as I shift from sitting to standing either. I stand up and can immediately take a step if I want; I do not have to stand there and be all frozen for 3 seconds until I can take off. When did that go away?? 8O

I still get some stiffening extensor spasms when I wake up but they are brief and similar to a normal person who yawns and stretches--minus the yawn; it is over quickly perhaps a half a second and when it is over, it is over, and I feel relaxed and flexible.

All types of spasms I have had for years are greatly reduced and getting softer all the time. I still take no baclofen and no requip.

My neck is almost pain free now and I do not have daily headaches from the accessory nerve pinch any more which is HUGE. It is not totally normal yet but it is well on its way. I have to say that the damage to that nerve was very disturbing it made me feel unwell and kind of more disabled when it was bad. I am so glad it is gone now. Mentally it was very VERY hard to take.

This is a problem for this high jugular surgery because that nerve is right there, my guess is that they are always going to take special care to avoid hurting it now that they know about it because of us early stent o teers, but that this will continue to be a possible side effect of stents in that location.

If you are reading this thread thinking about participating in a trial or something please be aware of this possible side effect. Ask ahead of time about it and if it happens to you, you'll know how it went for me. I had it, it was bad, I've been in PT and it is much, much better now by 6 months. Lew wrote about his experience with this too. Mind you that many others had neck pain for a few weeks, it is just a couple of us which had this actual damage.

Call out the trumpets cause now the big news: Today I walked with no cane and nothing at all for 500 feet at PT with the bioness on. It feels strange and peculiar to have no cane, and very scary. But I can do it. If I strengthen my right quadriceps I will do it more easily too they say, so I have new exercises to be doing for that.

Before you say "But that is because of the bioness" I will offer that I agree with that and we can't ascribe a percentage of "bioness help" and "stent help" for my function so you, the reader can know what is what. :? Sorry dude! But I want to remind you I had a walkaide trial (the other brand) before the stent surgery that failed because I was too spastic. It was not even a viable option before.

And today I walked with no support at all 500 feet.

I still get tired, but rest rejuvenates me. I still have lighter activity schedules than normal people, my balance is still somewhat poor and I have the standard bowel and bladder issues which seem pretty much the same.

Sleep however is far different. for years and years I would position myself in bed then sleep until I had to go to the bathroom, then I'd reposition with pillows and try to go back to sleep, often failing to drop off well again and to merely drowse until the next bathroom break...Usually getting up 4 times a night.

not restful!

Last night we went to bed as the power was out at 8. I fell asleep easily and woke to go to the bathroom once, I staggered in half asleep, then came back to bed and dropped deeply off again. I partially woke to change positions a couple of times but fell right back into restful sleep each time. When I woke for real at 6 I was REALLY awake and ready to go. ALL my nights are like this now.

I can say with no reservation at this point that I am grateful that I had the opportunity to do this and I do seem to be somewhat better, though not cured.

I am thankful to take this outcome and hope I do not progress, only time will tell. :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 LR1234 » Tue Nov 17, 2009 4:12 pm

Wonderful news Marie:) There is no way this can be a placebo effect, the changes you are experiencing are too great!

Wow walking without your cane, I bet you never thought that would happen!

I hope you continue to improve!!!

Thank-you so much for writing your blog, I loved reading it.


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Postby CRHInv » Tue Nov 17, 2009 4:59 pm

Today I walked with no cane and nothing at all for 500 feet at PT with the bioness on.


Marie! How fantastic is this??? I am so excited I can't even stand it. So many great improvements. So much hope!!! It must really make all the hard work you are putting into this soooo worthwhile. You have made my day, maybe my week!

Beth
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 ozarkcanoer » Tue Nov 17, 2009 5:24 pm

Marie... What you have accomplished is absolutely astounding. I am in awe...
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Postby cheerleader » Tue Nov 17, 2009 5:58 pm

Marie...I am SO overjoyed reading your update. The loss of spasticity is becoming a major help in healing for everyone. Jeff's sleeping better, you're able to use the walk-aide, Sharon's gait is better, Lew's cruising airports...

And you WALKED without your cane :!: :!: :!:

Really proud of you, Marie. Keep healing and sharing with us-
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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