Marie's Stents CCSVI

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

Postby mrhodes40 » Tue Nov 17, 2009 5:09 pm

I KNOW guys!! I mean really wow. I hardly even noticed these things creeping up on me. A lot of these 6 months I wondered if anything was happening and a few times wondering if I seemed weaker for a few days here and there. Just a note: spasticity can substitute for strength -just throwing that out there.

Your mind doesn't want to believe that you can get better because to do so means you could fall from that lofty place again....

I am not saying I am cured- by all means if you met me you'd still see a disabled woman--but I think I can say now you'd not see the woman you would have even 3 months ago. And that is fine with me.... :D

May all people experience this and may it be permanent, please God!
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 chrishasms » Tue Nov 17, 2009 7:24 pm

123
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Postby Arcee » Tue Nov 17, 2009 9:23 pm

Marie, how absolutely wonderful! Congratulations, for you, and for everyone with MS. You really earned this and have given so many so much realistic hope.
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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Postby ErikaSlovakia » Wed Nov 18, 2009 1:09 am

Marie, it is excellent!
I am going to write about you to the Slovak and Chech patients.
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 CureOrBust » Wed Nov 18, 2009 3:24 am

OK, now your just showing off! 8O

Brilliant! :D
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Postby Loobie » Wed Nov 18, 2009 5:32 am

It's happening to me too. Read my latest blog post. And each day it's starting to change; and all for the better. Doesn't it feel awesome? I did so much at work yesterday on my feet I couldn't believe it. I actually did what I intended to do, not what my MS limited me too. I was on the concrete for hours on my feet. This usually leads to tingling so intense I can't tolerate it and then pain. Yesterday all I felt was fatigue in my legs; just like anyone would feel who worked their legs too hard. And then I thought "tonight, I am f-ed", and by 7:00 I was back to normal. I got home and just cried and cried with my wife. I don't even know how to feel, I really don't. I mean I thought once they said SP, I was screwed forever. This is remarkable because it seems to be taking about as long, relative to our disease courses, and since you had your's done months before me, at the "right" time.

I just PM'd Coach about it and told her that I'm just so guarded to come forth and say anything because I just think it's going to go away. I can't ignore it anymore. Except for my bladder (keep your fingers crossed) I, too, am feeling SIGNIFICANTLY improved. It's just freaking amazing.

My God Marie, could it be true? My emotions are still just all over the map. I feel like a manic depressive in manic mode. I could carry on and on, but this is your thread. I just wanted you to know that hearing you talk like this makes me more inclined to come forward and acknowledge what I've been feeling also. Braaaaaa!!! That was supposed to be a big outburst of gobblydegook. I'm just juming out of my skin right now.

I had in the back of my mind this whole time that this is going to be something else that only helps people who aren't' progressive. I am like an emotional Tigger right now. I still can't freakin' believe what's going on with me. I still can't take a hot shower, but I already talked to you about my thoughts on that via email. But I would take ice water baths if my legs keep feeling like this. And the lack of confusion? Don't get me started!

Even after posting all of this, my instinct is to say "should I be talking about this yet? What if something changes back?". I need to work on that. Here's what's been really awesome. I've quit combining trips. My plotter is right by the water cooler. So I wouldn't get a glass of water until I had a 'combo trip' where I had to get a drawing also. Now, if I want a glass of water, I go get one. Then if I need to get a plot, I go do that. I just have no words.
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Postby Needled » Wed Nov 18, 2009 5:34 am

Marie, That's great news. Between your post and Lew's blog this week, it sounds like you two are letting yourselves believe good things may actually be happening, for real!! Please, please keep the updates coming.

EDIT: I posted before I read Lew's comments here. I'm just thrilled to tears (literally) for both of you and what this means for others. Just amazing!!!
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Postby radeck » Wed Nov 18, 2009 8:07 am

I just found your update now since I only follow the CCSVI forum as a daily routine. Now this made my week indeed! Reading your posting (and also Lew's emotional response) I had to shed a few tears myself out of happiness for your experiences. What you've been going through over all these years has made you exceptionally strong human beings, and you truly have owned this break. I hope with all my heart that the first thing that will ever make you feel less agile than you feel now will be old age, not MS :-)
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Postby robbie » Wed Nov 18, 2009 9:05 am

Your mind doesn't want to believe that you can get better because to do so means you could fall from that lofty place again....

This is so true Marie, glad you are feeling so good. It's really nice to know when your on the right track.
Had ms for over 19 years now.
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Postby mrhodes40 » Wed Nov 18, 2009 9:40 am

I don't even know how to feel, I really don't


that I'm just so guarded to come forth and say anything because I just think it's going to go away. I can't ignore it anymore


My God Marie, could it be true? My emotions are still just all over the map

It's like you took the words right out of my head Lew.

Yeah; what he said. :wink:

The terror that I feel walking without the cane is alike the mental terror I feel over this: there is a BIG part of me that doesn't want to acknowledge any improvements until they seem undeniable, sustained and not possibly wishful thinking. I am afraid to believe.

This is new it is experimental. No one knows what the long term will be. No one knows for sure if the disease will truly not progress, and if it does not for some, will that be true for everyone. I tell myself this----Why? to try to protect my heart in case something we do not know or understand yet comes out to be an issue. My fragile heart is terrified, and the unknowns weigh on me. What if, what if....

But the spasms are not changeable. Progressed persons know what I am talking about. The only thing that impacted them over the years other than spasm meds was flagyl, but that was incomplete and temporary relief aligned with pulses.

The fact that they are so strongly impacted and continuing to evolve with no drugs at all means to me something is happening in my brain that is positive. I just can't convince myself or prevaricate that this is a placebo any more. The difference is too striking, and as I said the PT noticed it herself and just commented on it unprovoked.

If I take a skeptics point of view, they might wonder if PT itself is the cause of this improvement, but the answer to that is no. I get PT on a regular basis and have had my own home gym set up for a long time. I have Theraband in every color. I would not be still walking if I had not worked at it constantly after 18 years of this. The spasticity was making it harder and harder to do what I needed to do, I was not able to reduce my spasticity by getting more exercise. It is not PT that did this.

There are still unknowns about this whole surgery and things that need to be remembered, one is that if for some reason my stents which are very high develop a problem and need to come out---let's imagine a nickel allergy develops or something weird like that---then the needed surgery would be very difficult and involved I believe.

IN MY SITUATION where there were no medical options available to me other than something new and experimental like this I am glad I had the chance and I am very blessed.

I was thinking last night I ought to document the spasticity I still feel for my own reference so I can notice later if it goes: I still feel "stiff" in my weaker leg walking. On the ellipse it resists its turn to bend and feels stiff there too. My right leg only stiffens out getting out of bed in the morning for roughly 2 seconds. Occasionally, perhaps one night in 4, I feel like a flexor spasm MIGHT start up once or twice, but a change in position makes that go away too so I can rest easily. If I sit for a long time without moving say 3 hours computing, I am a little stiffer trying to walk when I stand (but I have RA too, so that is not necessarily MS). My right arm that got broken so badly never completely rehabbed (it never will) and it functions strangely and is stiff and sometimes seems spastic but I do not know what is what there. So if things continue to evolve these are spasm areas that can potentially change more.

If Dr Z's team thought they saw improvments at 18 months, well then, we'll see.

I want to thank everyone for reading my thread and encuraging me. It means a lot to me, thanks! :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 MS_mama » Wed Nov 18, 2009 10:30 am

just found this, as I had only been lurking in the CCSVI forum.

I am so amazed and happy for you. Found myself tearing up a bit as I read about your walking without a cane. I wish you more and more healing each day! This gives me so much hope, you stent pioneers are amazing!
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Postby Sharon » Wed Nov 18, 2009 10:35 am

Wow, Marie!

As I mentioned in my update last week, the changes we are experiencing are not dramatic -- they just kind of accumulate and then you really take notice that something has happened.
The terror that I feel walking without the cane is alike the mental terror I feel over this: there is a BIG part of me that doesn't want to acknowledge any improvements until they seem undeniable, sustained and not possibly wishful thinking. I am afraid to believe

Last week, Dr. Dake told my good friend, Mary that it takes 10,000 repetitions before a movement becomes automatic. If you look on the Internet you will find many articles which would verify the statement. So, when you are now walking without the cane you are having to retrain all those brain responses. You have used the cane for many years -- now your body has to figure out how to be mobile without it. No wonder you feel terror! I experience a similar feeling when I go without the WalkAide---the important thing is that I feel like I can go without the WalkAide and so I do.

IN MY SITUATION where there were no medical options available to me other than something new and experimental like this I am glad I had the chance and I am very blessed.


I think there are quite a few of us who will have blessings at Thanksgiving this year that were not even thought possible last year.

Sharon
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Postby gibbledygook » Wed Nov 18, 2009 12:15 pm

Marie, I'm so pleased for you! Your descriptions are, as ever, extremely enlightening. Who knows how much better you might become?! I'm about the same as you especially with the morning stiffness and the standing up stiffness and the spasms. My eye deficit is also very rare. In fact I'm going for days and days without noticing it at all. At any rate I really hope that the bioness machine can assist in retraining your walking. I wonder if they have a bioness skiing machine!!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby catfreak » Wed Nov 18, 2009 5:07 pm

Oh Marie, this is wonderful!!

There is a lady in my hometown that has called me to check on my progress after CCSVI and I would love to have her talk to you, Sharon and Lew. I encourage her to get on and read the CCSVI threads so she can learn as much as possible. I told her I would get her the names of some folks with real mobility issues. She is still diagnosed RR but has terrible mobility issues. She and her husband are very interested in the procedure and I was wondering if you minded if she contacted you by PM.

Just let me know.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

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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Postby Loobie » Wed Nov 18, 2009 6:10 pm

I don't mind.
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