Marie's Stents CCSVI

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

Postby mrhodes40 » Fri Jun 05, 2009 7:33 am

Thanks Sharon, my throat hurts too but it is getting less and less every day, honest. Do you have an earache as well? I have a dull earache also that comes and goes in tandem with the throat ache. I have many good days where it does not hurt at all. I wanted soft food for a while too...soup was especially nice.

I did accidentally turn over in bed and turn my head too hard while at the same time having it down, ie chin to chest. So it was chin to chest and turned to the side at the same time which we are not supposed to do. Not supposed to do the up version either: no tipping the head up to the sky then turning it to the side at the same time. Those movements are not good for the stent area if you have high jugular stents. My PCP told me the reason is not that they will pinch off and get crimped, as I feared, but that they might be nudged and move. A stent going free in your circulation would not be a good thing. 8O

Anyway the turn over in bed flared it up and made it very sore for a day again--so I recommend that you don't do that!!

I did percocet during the day for about 3 days but I have used it only at bedtime for the last 2 weeks. I do that so I can really drop off and sleep well, percocet also helps my stomach relax. I will be off it soon though. I am not at all good about taking medicines like that... I do not like them at all.

When can I read YOUR regimen entry? :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 Sharon » Fri Jun 05, 2009 7:40 am

I will post this morning.
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Postby Loobie » Fri Jun 05, 2009 9:05 am

mrhodes40 wrote:.. I do not like them at all.


But would you take them in a box? or with a fox?

Sorry Marie, I just had to keep Ken's Dr. Suess thing going and that just reminded me too much of "Green Eggs and Ham" :lol: :lol: Plus I'm off for the afternoon and am feeling especially ornery since it's so nice out!
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Postby notasperfectasyou » Fri Jun 05, 2009 9:24 am

Loobie wrote:But would you take them in a box? or with a fox?


I love it!

Marie the Edgy One, I bet nothing beats the feeling that you just might be on the way to not having MS no more. Waiting stinks, but look how long you waited before this.

Ken
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Postby Anecdote » Fri Jun 05, 2009 10:54 am

Marie the Edgy One, I bet nothing beats the feeling that you just might be on the way to not having MS no more. Waiting stinks, but look how long you waited before this.


Just what I said last evening in slightly different words by email!

Sarah :wink:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Thu Jun 11, 2009 4:38 pm

I am now at 3 weeks and a day and my stomach is finally getting better. That blood leak has been a darned bummer.

I read that in femoral artery access the incidence of people having a bleed like that into the abdomen in the area that they did the femoral access is about 8%. What I had is a vein not an artery, so it should be less prone to leaking-femoral arteries pulse the blood out and can make big hematomas, but when people do have that complication, in an artery at least, they do take a goodly while to get over. At three weeks I am thinking another week off my feet resting it and letting it absorb then back to regular activities. I still have a very small area that must be leaking blood--still have a new bruise but it is about 1/2 inch round, not my whole lower abdomen like it was.

FYI: an interventinal radiologist can go in and inject thrombin into a bleeder and so it can close up without getting your whole body clotting (and maybe having trouble in the stent) if this happens to a person. I did not do that cause I did not know about that possibility til yesterday but would if I were in the same situation again with the bruise reappearing day after day.

Saw my doc today and she poked my tummy and declared it much less tender :lol: and then admonished me to keep down for a little longer then slowly add new activities. No ellipse for at least a week then only for 5 minutes....

I am counting the days.....

Other than that now that my stomach is better I am walking a little better around the house. I can't wait until I can try out more walking next week. fingers crossed.

I am a lot more awake and alert. THey have this sleep scale and fatigue scale you fill out every visit at my docs and I have great low numbers now. It asks you questions like "how likely are you to fall asleep sitting quietly after lunch (1-4)" and "how likely are you to fall asleep sitting in the car for an hour (1-4)" It is cool to note that I am a lot less tired than I was. MY score today was 7 where it used to be 15 or so. She also commented on my fresh alert awake look.

ANd on the way home from the doc's, we had the windows open and it is only about 70 here in the evergreeen state today so still good with the "I can keep my own body warm, thanks" thing . That is a great comfort!

I wish I had more cool stuff to report but being on bedrest slows me down a little as far as walkig and things like that.

As for stent discomfort it still gets better all the time. My neck still gets sore during computing especially, but overall the neck pain is far less than it was that first week. My more sore stent is on the right and I still get some of the headache in the eye thing with that--maybe once or twice a day I notice I have a dull ache still in there.

My coumadin has resulted in a fantastic array of bruises for fun I will recount them: both calves have two bruises the size of silver dollars, both shins have a string of small ones, every copaxone shot has a humdinger, both forearms have 3 bruises 50cent size, both hands have numerous small bruises inexplicably the middle finger of my left hand is bruised the entire lower section of it. I look battered except I have managed to not whack my face at all, thank goodness.

We got a full coagulation panel this morning so we'll have a full accnounting this evening.
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 » Thu Jun 11, 2009 4:56 pm

Marie -
Other than that now that my stomach is better I am walking a little better around the house. I can't wait until I can try out more walking next week. fingers crossed.


Great report! I think that any of the future Stanford guinea pigs will find these updates comforting. That headache in the eye thing - what an irritation. I thought mine was gone, and then this morning it came back. I am wondering if my massage (even though it was gentle and nothing in my neck), might have got it going again. It is better this afternoon. And, the bruises - oh, my gosh! How come Jeff has not mentioned any? Maybe we girls are a little more vain. :roll:

Thanks for posting Marie
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Postby mrhodes40 » Thu Jun 11, 2009 5:31 pm

How come Jeff has not mentioned any? Maybe we girls are a little more vain


:lol: :lol: I am. I guess a dude just looks tough. They are everywhere and I am using a rollator in the house too. For reference I am a wall walker so sometimes I kind of fall towards something like the couch on the way to it. I can see--REALLY see--that a whack on the head would be very bad news. 4 weeks and 5 days and my 2 months is up!

Do you already have your follow up set?
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 » Thu Jun 11, 2009 5:49 pm

No, my follow-up is not set. Dake said he would give me a call - it will be the first part of August. I mentioned to him that I had a trip planned to China in September and I really wanted to have everything behind me. He assured me that I will. He leaned up against the wall in my hospital room and spent the next ten minutes telling me where to visit and places where I could just forget.

Holly and I thought we might be scheduled about the same time - we are going to try an coordinate the days so that we can meet each other. It just did not work out for us on the last visit.

I start back to my strength training exercises tomorrow - any bets on how many new bruises I get from the equipment?

Sharon
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Postby peekaboo » Thu Jun 11, 2009 6:26 pm

CHINA I'm so envious :)
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Postby Needled » Fri Jun 12, 2009 11:46 am

Ahh, Marie, Holly and Sharon posting all in a row -- this is too good to pass up! I only have a second, but I just wanted to let you know (again :)) how much I appreciate your sharing your experiences and thoughts and how happy I am that you're all recovering and feeling better. I read as much as I can at work, then at home it gets crazy and I run out of time. So thanks for all you do. Gotta get back to work to pay the bills!!
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Postby cheerleader » Fri Jun 12, 2009 12:48 pm

mrhodes40 wrote:
How come Jeff has not mentioned any? Maybe we girls are a little more vain


:lol: :lol: I am. I guess a dude just looks tough.?


HAHAHA! Jeff is one of the least "tough" guys in the world (don't tell him I told you, but he's a sweetiepie)....but you're right, he could care less about the purple spots on his legs and arms. He has some nasty ones from his copaxone shots, but his clothes cover the worst ones, so he says it's no big deal. He's so happy to be AWAKE! that he'd take a body covered in bruises over his prior fatigue, anyday.

Jeff goes back to see Dr. Dake on July 6. We're taking our son (family trip! I want our teenager to see Stanford Un....he's interested in science/medicine/research)

Marie...I am SO glad that your tummy is showing signs of healing, and that this chapter of recovery will soon be only a memory. I can't wait to hear how exercising and walking feel once you're allowed to get up and move.
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Loobie » Sat Jun 13, 2009 5:28 am

cheerleader wrote:Jeff goes back to see Dr. Dake on July 6. We're taking our son (family trip! I want our teenager to see Stanford Un....he's interested in science/medicine/research)


I wonder where he gets that? :lol: :lol:
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Postby CureOrBust » Sat Jun 13, 2009 5:55 am

mrhodes40 wrote:I am now at 3 weeks and a day and my stomach is finally getting better.
...
Saw my doc today and she poked my tummy and declared it much less tender :lol: and then admonished me to keep down for a little longer then slowly add new activities. No ellipse for at least a week then only for 5 minutes....

I am counting the days.....

Other than that now that my stomach is better I am walking a little better around the house. I can't wait until I can try out more walking next week. fingers crossed.
...
I am a lot more awake and alert.
...
I wish I had more cool stuff to report but being on ....
So, by MY calculation, this week is "More Alert", next week is using your elipse, the week after that is when you go on the home shopping channel and purchase your "six seconds abs routine" and the week after that you post the photos of your new six pack. thats about right huh?
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Postby mrhodes40 » Sat Jun 13, 2009 7:32 am

this week is "More Alert", next week is using your elipse, the week after that is when you go on the home shopping channel and purchase your "six seconds abs routine" and the week after that you post the photos of your new six pack. thats about right huh?


Totally, exactly, right on, that's me to a "t". lmao!

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!
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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