Rose Testing/Stents

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

Postby Loobie » Mon Nov 23, 2009 5:06 pm

I agree with Marie. All those going on that crap get your GP on board with your INR therapeutic target BEFORE you get the procedure done and make it your first stop when you return.
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Postby CRHInv » Mon Nov 23, 2009 5:52 pm

Wow. This is important, but we are getting an awful lot of stickies. It seems like everyone bumps the getting ready thread pretty regularly. Maybe incorporate some of the most important getting ready stuff an the coumadin? The coumadin is huge and it would be terrible for another to go through what Rose has. It really may make the most sense in a sticky.
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 Rose2 » Mon Nov 23, 2009 6:12 pm

mrhodes40,

I do think the Coumadin needs a shout out.
I swear I read everything on this forum and did understand the conversations from everyone about their INRs, etc.
I really am surprised with the attitude and lack of concern I have been met with.

I do see the part about liability being an issue, it sure did look like it to me when they told me to go away for 2 weeks and then were not at least concerned with my 10.6 INR and took myself to ER.

Your MD sounds like an awesome caring person from what I am dealing with. I just took it for granted that my MDs office would be caring and concerned, but that is not the situation.

I wonder if they would be so cavalier if they were the ones prescribing my Coumadin? I think not.
I wonder if anyone else has met with MD resistance in this area?
Have you heard of it before here?
Thank you for the great information. I really appreciate it.
This morning I was 2.5. Jumped up from 2.06 a few days ago. so they are titrating me down then up a little before my next blood test.
I think I am just going to me one of those 'jumpers' until I get off of it.

Gosh I hope I didn't mess up my stents. I am very concerned about that part of it.
Sincerely, Rose
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Postby SammyJo » Mon Nov 23, 2009 7:06 pm

Rose, thanks for all your information, so glad you made it through!

Marie Sticky: Preparations Before Procedure & Precautions After

Make it sticky, and just copy what you have on this thread, and others can add to it. Very important, your insights on how the medical biz makes money or doesn't, like coumadin follow-up. We need to know that too.

Here's mine: call the Stanford MRI desk before you leave home and make sure they've got your contact numbers, in case the MRI goes offline. We've been keeping them humming, and it was out when I got there for my appointment. They were able to shuffle me in, but it was nerve wracking.
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Postby mrhodes40 » Mon Nov 23, 2009 9:33 pm

I can only offer my experience my INR was all over and mine were good on the 2 month recheck.
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 ErikaSlovakia » Tue Nov 24, 2009 12:44 am

Hi Rose2!
I am so sorry for your troubles with Coumadin 8O
I was really scared reading your story.
I do not have any good advice as I inject Clexane. I do not have to go to check INR. I feel the same all the time - I mean I fell well.
I just can wish you good luck!
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 Rose2 » Sun Nov 29, 2009 8:00 pm

Hi All!
I forgot to post my updates, I have been so worried about Radeck.
BUT, last night we went to a small party at friends' house.
We arrived and it was at least 1/2 hour into it when I realized, I WAS STILL STANDING AND TALKING!!!!!!
Yes!! I haven't been able to do that for years!
And I didn't even realize what I was doing.
I wasn't looking for the escape chair to sit in as I always do.
Amazing core strength and no Cog Fog!
So, that is all I have to report right now, but that is really HUGE for me.
OH, and I sat in a real chair and chatted with 'the girls' for a few hours!!
This is sooooo wonderful.
1. I WENT to the party.
2. I STOOD and had cocktail conversation for at least an hour without needing to sit down.
3. I SAT in a regular chair for at least an hour after dinner.
Just an fyi. Thanks, Rose
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Postby CRHInv » Mon Nov 30, 2009 7:49 am

Rose,
This is terrific news! I think I am having some of the same improvements. I can't wait to try them out at holiday parties this year!
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 Rose2 » Mon Nov 30, 2009 5:58 pm

Hi1
I FINALLY got around to doing my 'walk' that I was so anxious to try after the stents, but got way-laid with the other issues.
SO, I did it! I walked my 3 blocks and breezed right by the place I usually (always had to) sit down and rest. REALLY!!
So, that question is now answered.
Don't know how to explain it but I will take it.
just an fyi.
Rose
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Postby CRHInv » Mon Nov 30, 2009 5:59 pm

Woohoo!
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 » Mon Nov 30, 2009 6:02 pm

I am so happy for you! I hope it keeps going this way for you :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 ozarkcanoer » Mon Nov 30, 2009 6:04 pm

That is good news, Rose. Thanks for sharing it with us. :D :D
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Postby Rose2 » Sat Dec 05, 2009 6:31 pm

Hi All!
I am going for my follow up at Stanford this Wed/Thus Dec 9/10.
Is anyone else going to be there? Would love to meet someone!
I have MRI @ 7:30 pm Wed nite and consult w/ Dr. Dake Thurs at noon.

I am feeling really well. I started PT yesterday for my right shoulder that I kept hoping would get better, but it hasn't so Dr. Dake called in a PT order for me and it already feels better today. So I am happy with that. I think laying in that hospital bed for 10 days really did not help my shoulder that was sore but getting alot better before I went in for the long stay.
Anyway, let me know if any of you are around. Thought he might be doing other follow ups at that time so I wanted to check with you.
Thanks, Rose ;))
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Postby jay123 » Sat Dec 05, 2009 9:55 pm

Another hijack along the same lines. I go out Feb 16. -
- My GP is all set for monitoring, he is also a cardiollogist and has a lot of people on coumidin so no problems there
- I am going to check pricewatch and all those sites for the best hotel rates.
-We will fly in to San Jose. Do we cab to hotels, or does anybody know a hotel with a shuttle.
-We are going out at least one day and maybe 2 days early. We will look for some local tours or something, ideas? Flying from the snow in, it probably will be 2 days early in case we get snowed in here, I'll have a day extra.
-Is it a definite that we should stay in a hotel the day after the procedure and not try and fly home?
-Is it a problem with my wife planning on staying at the hospital the night of the surgery? She probably won't want to go back to the hotel.

Anything else I'm not thinking of?
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Postby CureIous » Sat Dec 05, 2009 10:19 pm

I thought I was "good to go" the day OF the surgery. Some very wise folk in here (uh, Sharon for one) talked some sense into my thick skull to plan on staying overnight in my hospital room. I mean I REALLY didn't want to stay overnight, whats the worst that can happen?

Oh boy am I glad I stayed. Like the nurse said, "if you leave, we can't give you the good stuff" lol. And good stuff I needed! Funny how much better things were in the morning. It would have been stupid crazy idiotic to just bounce out to the hotel and "sleep it off". No way no how never do it.

Not that it was in the extreme trauma category or anything, by the morning's light I was bouncing around ready to run laps, until the meds wore off hahaha. Good lawd fill the scrip first. Not like that for everyone of course, just a matter of just in case you want to be ready. You shouldn't have any problem having the wife stay with you in the room, they are very accomodating there. Just plan on not sleeping much is all but that's easily remedied the next day. So whatever day of the surgery is, I would plan on that night staying overnight hospital, discharge in the morning but would stay that next night at the hotel to give yourself and the doctor some cushion room there in case anything goes awry, you do NOT want to be halfway home. So myself, honestly, I would take that extra day before the op, and put it AFTER the op when the take-it-easy part is needed the most...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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