Marie's Stents CCSVI

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

Postby chrishasms » Sat Jun 13, 2009 10:04 am

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Last edited by chrishasms on Sat Dec 05, 2009 1:05 pm, edited 1 time in total.
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Postby Terry » Sat Jun 13, 2009 5:33 pm

Wow, I found this really inrteresting.

But seriously, in my mind it is important to take advantage of the early healing phase because for a little bit at least the BBB should still be open though it should be revising and changing toward a closed repaired area. if you get a lot of blood flow through there at that time then it should reduce the inflammation a little better than it will later when it is closed all the way, at least it seems so in my logic which may be all wrong.

I hate to think of "locking" anything behind the BBB...but that is my fevered thought running ahead of any science at all totally speculative thought!


My thoughts have been that everything the blood dumps in there is bad because it wasn't supposed to be there . I thought the cleanup comes from inside the brain, that nothing to clean it up is coming from the blood. Is that wrong? If it is wrong, then the closing of the BBB could be bad. If the clean-up comes from inside, then the sooner closed the better. Interesting.
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Postby mrhodes40 » Sat Jun 13, 2009 7:10 pm

The brain uses microglia to do the work of immune system inside the brain BUT, and this is not appreciated by enough people, the microglia can use cytokines to call T'cells and b cells into the brain and they can also open the BBB.

The microglia are not a full service immunity, so to speak, so they rely on the peripheral immune system when needed to help out. when you have a stroke for example the peripheral immune system is called in to help...this is well known and also a cause of some of the damage cause it hurts stuff in the brain to be exposed to all the normal immune stuff... which is why it usually is not allowed.

You comment got me thinking about how to respond and I was reminded as I thought about it that the microgial can call for cleanup so maybe it is a moot point to worry about this. Thanks Terry!

It kind of came from our old MS research and thinking; there has been a huge amount of speculation about "locking inflammation behind the BBB" and that being the cause of SPMS, speculating that after a certain point it gets stuck behind the BBB and it will simmer on its own in there. THis thery grew fro the seeming fact that SPMS has no inflammation and they always had said MS lesions and exacerbtaions were caued by inflammation, that thery accounts for that by saying that eventually the inflammation gets "locked" behind the BBB and self simmers with no more input from t he periphery. I sort of adopted that idea, tha of being "locked behind the bbb" to worry about with no good reason to do so........

I can't tell you how frustrated I am having to be on bedrest for the belly hematoma; it makes me feel fret ful and the hours get full of wierd ideas.

you almost can't feel any trouble in the belly there now though so we are winning it....just a few more days and I an get some endorphins and you guys won't have to hold me up all the time. :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 Terry » Sat Jun 13, 2009 7:28 pm

.just a few more days and I an get some endorphins and you guys won't have to hold me up all the time.


Who's holding who? I was wondering when you were going to get some rest.

Thanks for the answer.
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Postby mrhodes40 » Tue Jun 30, 2009 3:55 pm

6 weeks.

Man I finally am feeling almost no belly pain. Whew on that one.

I can ellipse for 12 minutes easily and my INR has stayed pretty good so I am stable there but bruised.... Lots of bruises. For others following : the coumadin is a big deal and you must be careful not to whack yourself or fall. I bruise touching things I hate to think if I hit my head or fell like usual. Careful is the name of the game here. I have been staying home mostly and I don't drive (can't turn my head well) for the time being.

My neck is still pretty sore. It just is. Jeff's is better but mine is still achy in there and sometimes my head hurts as well from the neck issue. Sharon has some neck stuff too. It is hard to even wash my hair I can't lift my arms easily overhead. I can't put a barette in so my hair swings wild. You gotta know this about the jugular stents they are not a walk in the park. Based on Jeff's healing of this I assume I will get better and be pain free at some point....

As for improvements: I have reduced spasms overall very little restless legs at night and almost no stiffness when I get up from a chair for example. Some, but not for like 5 seconds like it used to be. now it seems to be brief almost unnoticeable to others, a flash of stiffness. I do not understand this. But it seems like this is real.

Somebody coming after me time your spasms and see if at 6 weeks you have less. I wish I'd have thought to time this before but I did not expect this. Going to bed is more comfortable too because I have so little restless legs. Some but not much at all maybe 4 or 5 "adjustments" as I settle down, not 1 a minute going on for an hour or more. I have not stopped taking my requip (restless leg medicine) I will try it soon and see what happens. I want to make sure we win the belly thing totally before doing that.... so pain free or no try.

As for walking nothing to report there. NO apparent change so far. I did write checks the other day and my handwriting was better than usual, my signature was flowing as it used to and not the childlike scratch it has been lately. My husband continues to say I look fresh and rested and good.

well that is my 6 week report. some good, some I don't know stuff in there I guess! healing of the surgery area is apparent. yeah!
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 » Tue Jun 30, 2009 4:39 pm

mrhodes40 wrote:As for improvements: I have reduced spasms overall very little restless legs at night and almost no stiffness when I get up from a chair for example. Some, but not for like 5 seconds like it used to be. now it seems to be brief almost unnoticeable to others, a flash of stiffness. I do not understand this. But it seems like this is real.

Somebody coming after me time your spasms and see if at 6 weeks you have less. I wish I'd have thought to time this before but I did not expect this. Going to bed is more comfortable too because I have so little restless legs. Some but not much at all maybe 4 or 5 "adjustments" as I settle down, not 1 a minute going on for an hour or more. I have not stopped taking my requip (restless leg medicine) I will try it soon and see what happens. I want to make sure we win the belly thing totally before doing that.... so pain free or no try.

As for walking nothing to report there. NO apparent change so far. I did write checks the other day and my handwriting was better than usual, my signature was flowing as it used to and not the childlike scratch it has been lately. My husband continues to say I look fresh and rested and good.

well that is my 6 week report. some good, some I don't know stuff in there I guess! healing of the surgery area is apparent. yeah!


Marie,

This is so good to hear. I am so thankful that you are feeling some positive change! That must be scary and overwhelming at the same time. The stuff about the leg stiffness upon getting up is extremely encouraging to me. This relapse has left me with way more of that and also way more spasticity than I've ever dealt with. I'm actually home because I didn't feel I could make the twisty walk to watch my daughter's swim meet :cry: . This is my first missed meet and I'm bummed and pissed at the same time. It will be the little things that change. We didn't get here in a hurry and I doubt we'll heal any differently.

I will keep a journal on spasms and report back after I get hooked up in two weeks. It's so close. Well Dr. Dake is definitely going to be able to see someone in active, or just active, disease. This has been my worse yet by a long shot. I don't know if it was any more severe, I just think once you already have a fuller bag of fun, it just seems worse since your baseline is down further. I pray for you every day and hope you post in a year how you have to be a new ellipse because this one is worn out!!

Take care and rest that belly until it's well!!

Lew
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Postby mrhodes40 » Tue Jun 30, 2009 5:26 pm

actually home because I didn't feel I could make the twisty walk to watch my daughter's swim meet

Oh God I know how that feels I am so sorry about that. I hate twisty walks :evil: People just have NO IDEA how the world looks to someone like us. It is days like that that make me think W/c would be nice--I don't have one and hope not to get one but there are days where it seems good... I'll probably do the walkaide deal and hope that aides walking.

And weird on the spasms huh? I wish I had noticed more before so I could be objective- I am glad you can do it. Thanks Lew!

I am glad I did it I just want to be honest about the discomfort so people coming after don't say hey you didn't say about this neck thing with the high jug stents. It is probably a 4 out of 10, 10 being the worst pain, and it starts out every day at a 0. It is the computer that sends it to 4-land. keeping the head on top of the spine helps, letting it sag forwrad is very bad. having a severe case of blab-or-eah is very bad for this condition it makes you type for ever. :lol: 8)
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 » Wed Jul 01, 2009 3:53 am

I have a feeling I'll be dealing with some of the same stuff. I have a little blab-o-reah myself. But hearing every one of you say it, I may have to put forth extra effort to stay off of here but for a bit to report. I am definitely a big computer user since I've slowed down so much. Hope to have to knock some dust off of it down the road, but we'll all get through all of this.

The twisty walk thing is indeed unusual. I can walk fairly efficiently as long as you don't ask me to do anything but straight and not downhill. I've got a screaming case of IT band syndrome and it's just loads of fun on top of all the new spasticity. I've been taking a Baclofen at night (just started) and I don't think I like that stuff. It makes my nighttime bathroom trips very hard as it makes my legs so damn weak. And don't stop in front of me because I don't stop very well either. You? My pets must think I hate them as I'm always "pre-yelling" or clapping my hands real loud for them to move the heck out of the way. Stepping over them, veering off to the left and right; all that makes my legs hurt and gets them all flared up.
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Postby CureOrBust » Wed Jul 01, 2009 8:07 am

do not be concerned about the "blab-o-reah", we all wait patiently for anything from the "stent-o-teers" :D
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Postby cheerleader » Wed Jul 01, 2009 10:07 am

CureOrBust wrote:do not be concerned about the "blab-o-reah", we all wait patiently for anything from the "stent-o-teers" :D


"stent-o-teers" good one, Cure! Just had an image of the mickey mouse hat with metal stents attached to those big, black ears!
Does that mean Jeff and I can now be
"Cheer and her Stent-o-teer??"

:P
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed Jul 01, 2009 10:19 am

S-T-E.......N-T-O......T-EE-R-SSSSSSSSS

stent o teers!....stent o teers! Forever let us hold our banner high HIGH HIGH HIGH Come along and sing the song and join our jamoboree.........


Ok Enough. Blab-o-rhea. Cure that was great.

Lew Yes it makes me weak my hope is to get off the crud and then discover new strength. And my poor doggie...."MOVE!" she knows what that means-border collie not a problem for her. My kitty passed away some years ago and I did not get a new one because the leg threading was dangerous for me. :cry: I LOVE kitties so I'll be really happy if I can get one again someday.... to languish on the couch with a kitty on my chest spurring away, that is heaven
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 gibbledygook » Thu Jul 02, 2009 12:28 pm

"A flash of stiffness" is an excellent way to describe the improvement. I had not even noticed this but I'm standing up without the usual stiffness that usually requires a minute of waiting to be able to flex and stumble on.

I feel as though we have made it out of the jungle and onto the savannah!
:D
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 mrhodes40 » Sun Jul 05, 2009 8:40 am

$th of July update:

I had an interesting 4th. For many years now holidays have been my best measurement of how I am doing because it seems that those are the times that losses show themslves....ie last year I put the lights on the tree myself this year I lost my balance so much I needed help.

But the 4th was great for me.

On the 3rd--Two days of fun in our town cause the city fireworks are on the 3rd, so people do their own on the 4th--I got up at 5 am and started my big food. By 8:30 I had 7 pounds of fried chicken in the fridge and 8 pounds of potato salad and beans in the crockpot simmering... and the kitchen cleaned up for the grandbabies to come with bubbles set out and bowls of nuts etc around and the dishwasher running.

By 9 I was sunbathing for a bit of vtamin d. At 11 I was showering and dressing for the celebration. The kids got hung up in the ferry so I ended up on here mid day. When they got here I talked to everyone about their stuff (gramma watch me do this bubble..) and we started food. we played games and talked and ate. At 6 they went to walk the beach and I decided to stay home, with no nap and having been up since 5 am I just didn't feel I was up for a beach walk, even though for me that means getting down there with my cane and a person on the other side then sitting on the log. So I stayed home for that and they sent camera phone pictures while I cleaned up dishes. They left for the fireworks in town at about 9, I collapsed into bed after being up and on the go for 16 hours.

I slept like a log then woke at 5 on the 4th, the kids got here at about 10 and told me about the big BIG fireworks they saw (6 and 4) and we had breakfast and watched berenstain bears. At noon they left, I took a nap for an hour then read a book.
The thing that is remarkable is how much I did, how long I was up and how well I felt for all this. At no time did I get that "I can stand one more minute then I am going to scream" grumpy feeling I felt tired, yes, but not on my last nerve --does everyone get that?

I think at 48 my fatigue level was pretty normal.

This was a good day for me, I kept being surprised that I was getting through it without falling apart. I was tired on the 4th after the big day but it was not bad....and I stayed up with my husband until 11 watching the large displays visible from the house....

as an aside I am not fond of fireworks, I think they are bad for wildlife and the smoke is horrible so we don't buy them but I am shocked at how much other people buy. There must have been at least a dozen families with the kind of fireworks that go way up in the sky and burst in big balls hudreds of feet wide, it was dramatic. This is a new house for us, we built it last year and it is accessible. It is our first 4 th here so we were surprised by the ....competition?.... between displays. :?

but look at how much I was up! and I was perfectly OK the whole time.

I am not walking any better I'll just throw that in there, most of what I am seeing is in relation to fatigue, awake feeling, less cotton head, and heat tolerance...oh and spasm reduction. With time that may impact walking a lot we'll see....
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 cheerleader » Sun Jul 05, 2009 8:59 am

Thank you for sharing, Marie. Tears in the eyes. I'm glad that you are feeling more "present" in your life...and that the increased energy is allowing you to be there with your family- to be a participant. What fun to share the holiday with the little ones! And all that food! Go Grandma! Jeff's family commented yesterday on how different he looks and seems...that he is more "with them" now. He is no longer in that horrible, painful place you describe so well....the "I can't take another moment of this" place.

I'm sorry you haven't seen more improvement in your walking. Prayers for continued healing. Thanks for describing your holiday so well, stento-teer Marie!
xox,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Sun Jul 05, 2009 10:35 am

Cheer you're the best :D

I forgot to tell that I made cookies (double dark chocolate, oatmeal and walnut)--from scratch, it is a matter of pride for me my cookie jar is never empty--on the 4th early am too. I was a homemaking machine, really!

And this morning the 5th I started with biscuits & omelettes. I feel like in a way I am "back". Not that I have let my "duties" go, but I have not been able to do several days in a row in such stellar form for at least 4 or 5 years..I had learned to have a day on and a day off and to rely on store bought goods.

I mentioned the walking because I kept being frustrated that I wanted to move faster do more but my leg is so stiff, drop footed and difficult I just couldn't get it to keep up with me......

If I could walk just a little better..............

I probably will do the walk aide that I bailed on as soon as my stanford bills are paid.
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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