Rose Testing/Stents

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

Postby Sharon » Thu Oct 29, 2009 6:44 pm

Woo Hoo, Rose! Glad to hear you are feeling so much better

Sorry that our Rockies are not in the Series!! -DARN IT!

Sharon
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BETTER YET!

Postby Rose2 » Fri Oct 30, 2009 1:09 pm

Hey!
Today is Friday, Oct. 30, 2009. My procedure was Oct. 20th.
Today I woke up PAIN FREE!!
NO headaches, no sensitivity eyeball aches, NUTHIN!!

I pray it is not post-op euphoria, and I am sure everyone that has felt better after this is probably still waitihg for 'the other shoe to drop feeling'.
This is like waking up in Disneyland or something.
Unbelieveable!

I am resting today and will try a walk down the sidewalk tomorrow to see if I go past my ususal point of stop, sit and rest.
I will report back!
Smiling!!! Rose ;) :) :)
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Postby cheerleader » Fri Oct 30, 2009 1:33 pm

Rose...
SO happy for you. Trust the good feelings, and keep healing. You're on your way!

You can do us all a favor by posting your facts on the tracking thread...this is very important for us to keep track of those who've had the procedure and how they're doing. It's easy, just copy the info and paste it into your response and fill in your information- you can come back and update it as more time passes.
http://www.thisisms.com/ftopict-8346.html
Thanks in advance!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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OK

Postby Rose2 » Fri Oct 30, 2009 1:44 pm

Thanks Cheer,
Yes, I will try that site again. It was difficult for me when I was there before for some reason that I don't remember but will go back and see what I can enter.

HooRah, since I made it thru Boot Camp I can do anything, right??
Rose

This is just soooooo awesome!
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Postby radeck » Fri Oct 30, 2009 1:45 pm

Rose, I'm very happy that you're doing well. Apart from updating here, you can also edit the tracking thread such that the history of symptoms post procedure becomes apparent, i.e. every week (or however often you feel like it of course) you can ADD a new update line. This was my original intention but I think some people prefer to replace past updates by more current ones.
Last edited by radeck on Sat Dec 19, 2009 1:25 pm, edited 1 time in total.
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Postby CRHInv » Fri Oct 30, 2009 1:58 pm

Yeah Rose! Let us know how that walk goes!
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 magoo » Fri Oct 30, 2009 2:44 pm

I'm thrilled for you Rose!!! Nothing...........really??!! Fabulous:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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NOTHING, REALLY!

Postby Rose2 » Fri Oct 30, 2009 3:08 pm

NOTHING, REALLY!

I just emailed Alex to let Dr. Dake know also. She will probably see it Monday if she has time.

Alex sent me an email telling me how very much she loves working with us MSers and helping us. She is one awesome lady.

Have a great weekend!!
Rose
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Postby magoo » Fri Oct 30, 2009 3:37 pm

Rose, did you get to meet Alex???
I went to see her twice and missed her:(
She is amazing!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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ALEX

Postby Rose2 » Fri Oct 30, 2009 4:22 pm

Hi Rhonda,
Yes, Alex actually came to my hospital room to meet me!!
She is a dark haired beauty, was dressed in scrubs cuz she said it was her day in The Lab, so I am guessing she works in those Research Rooms also that I saw in the Falk Building.
A woman who can multi-task for sure!!
We were holding hands and didn't want to let go while the nurse was trying to work around our grasp. It was funny.
She admits she is just as much of a perfectionist as Dr. Dake, so I know why things get done!
Wow, what a day you had!! Congrats!! Rose
We met Alexis at the Falk Building. Another beauty! I am glad there is now a 'D' name.
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Update

Postby Rose2 » Sun Nov 01, 2009 5:46 pm

Hi All.
I overdid it on the day I wrote I had no pain. But I am still doing very well.
I ended that day with the dull eyeball headache that comes and goes.
If I chew crunchy food (carrots, etc) or talk to much I can trigger a sharp headache but that is about it.
I haven't made the walk down the sidewalk yet as my husband has been gone until dark.
Hopefully tomorrow.
But still better everyday!! Just fyi. Rose
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Postby magoo » Mon Nov 02, 2009 7:05 am

Oh Rose! Take it easy:):)
Tylenol seems to work well on the eyeball headaches I'm still getting. I overdid it on Halloween, but it was so much fun. I rested all day yesterday and feel much better. I hope you are feeling no pain and lots of energy again VERY soon!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Wed Nov 04, 2009 7:49 am

Hi Rose, I hope you got rested up again! Did you make the walk?
Hope you are having a good day,
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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Hey!

Postby Rose2 » Wed Nov 04, 2009 9:46 am

Hey!
I AM getting rested up!!
I DID overdo it those first days I was feeling good, and then I went into a little bit of a funk worrying about the MS fatigue, etc.
But I did wake up these last 2 mornings with no headaches, and feeling like a real, live regular person.
I have decided it is not like the MS fatigue but just a matter of post-surgical (procedure) trauma healing that would be normal.
My right arm is much stronger today. I can lift it from the shoulder with alot more strength. And my neck is almost back to normal strength.
The loss of strength post-op in both neck and shoulder/upper arm took me off guard.
Everything in MS is so bizarre anyway, that I think we can all relate to experiencing these types of symptoms with a different 'mindset' than other patients might?
But, anyway, I can just tell others, REST and give it more time than you thought.
Dr. Forrester told me 2 weeks or more and of course I thought, Not Me, I will be out golfing in 1 week minimum. It is hard not to rush it mentally and physically.
So, all is good here. I just have to REST!
Rose
PS. I look like a black and blue punching bag. I knew the bruising would come, but I was surprised that the bruises would be so sore without any real reason for them, other than the medication. It is weird.
There is one large bruise on the back of my right thigh that prevents me from sitting down in certain chairs (too tender) and I am sure it is from the toilet seat!!! Yep!
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Postby Arcee » Wed Nov 04, 2009 10:45 am

Rose, glad things are going well. Just wanted to point out that I was so bruised my PCP suggested that perhaps it was from the combination of the drugs. She and Dr. Dake were comfortable with my stopping the Plavix, so I did, and the excessive bruising did stop. Something to keep in mind to discuss with your docs if you do end up really, really bruised.
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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