Rose Testing/Stents

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

Today

Postby Rose2 » Mon Oct 19, 2009 7:26 pm

Hi! I just walked in the door. 8:00pm. Long day at Stanford. Dr. Dake is so busy. My gosh.
The MRI/MRV went well. Seemed faster than the almost 2 hours it was. They had some computer problems and redid a few views, but was smooth.
Dr. Dake saw stenosis on the right side jugular and the collaterals of a very large size, too large for what he saw in the MRI, so I am going in tomorrow morning at 6:00am for venography with procedure. he wants to check the subclavical valve. So he didn't really state a game plan today, will wait till tomorrow.
I have to go research venology, now.
FYI. Thans to all. So far, so good! Rose
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Postby CureIous » Mon Oct 19, 2009 9:09 pm

This is good Rose, sounds like there is something there.

When he gets the ink in ya, then they take that snapshot with the fluoroscope, that will yield much more info than an MRI. The collaterals you see are a lot smaller too but they are there. The stenosis is hard to point out definitively on my MRI's, there's so much mish mash of veins in there, but I assure you, the one I saw on the post-op veno in his office was unmistakeable, a real jaw dropper.

He will more than likely see much more when you go in for the "close up".

Keep us posted we are inquiring minds! Good luck and Godspeed.

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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Postby CRHInv » Wed Oct 21, 2009 9:24 am

Rose, I am sending good healing thoughts your way. Hang in there.
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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Postby magoo » Wed Oct 21, 2009 9:36 am

Rose, Are you okay? Surgery was rough for me and I'm still in a lot of pain. I hope this is not the case for you. Get well. Dr. Forrester actually did my procedure with Dake guiding. I liked Forrester.
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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I'm back!

Postby Rose2 » Thu Oct 22, 2009 6:03 pm

Hi. Short note to let you know I got home from Stanford today. 2 stents placed. I will write more tomorrow. rose
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Postby CRHInv » Thu Oct 22, 2009 7:39 pm

So glad to 'hear' from you. Sleep well. Sending healing thoughts your way! 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 » Sat Oct 24, 2009 10:57 am

Hi All!
Today is Satturday. I am coming up for air today!
I had 2 stents placed on Tuesday. One up high in juglar, above ear, rright side and one in chest. the 'a' vein, sorry I cannot see well enough yet to type thiis. No stents needed on left side.!
Came home on Thurs. I had trouble with nasuea post-op and it took a while , an extra day,to get me quiet. They took me off all pain meds Wed morning to quiet my nausea, so I am being a good soldier!
It was an amazing procedute and I am really glad I have had it done.
Being semi awake was really cool also.
Today All sensitivity on right side of head. but alot better than yesterday even. eye sens to light, and ear sens to sounds. I am trying Children's tylenol with some relief from that.
Rhonda, how did it go? How many dod you have.??
Dr. Dake was very nice, extremely thorough about determining/diagnosing problems. He just wasn't happy until hie found the 'a' vein on the venography that really didn;t show in the MRI. It was like he had struck gold! 'Found it"! He KNEW there was somethng else in the equation that needed to be found. and he wasn't going to stop until he found it! and for that I am grateful for his true commintment to his profession. He Da Man!!
Dr. Forrester was very good also. I saw him most post op as Dr. Dake had to leave town for another convention. I think he is one popular guy, tho I think Alex could give him a run for his money!! ha.
I better go. I think I am not making alot of sense and can't see the screen anyway.
Please let me know if I can answer any questions.
I am back and smiling! Rose
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Postby bestadmom » Sat Oct 24, 2009 11:02 am

Congratulations Rose. I'm glad you are smiling. We're all smiling with you and for you.

Michelle
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Postby ErikaSlovakia » Sat Oct 24, 2009 11:16 am

Great news Rose2!
Congratulation!
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 radeck » Sat Oct 24, 2009 11:29 am

Rose, I'm so happy to hear you're well. What's that "a" vein?
Last edited by radeck on Sat Jan 16, 2010 9:05 pm, edited 1 time in total.
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Postby cheerleader » Sat Oct 24, 2009 11:38 am

Thanks for posting, Rose. It's good to hear you're home. Sounds like Dr. D found something in your azygos vein that needed fixing! Everyday will get better....Jeff says he feels your pain with that nausea. Keep healing and keep us posted-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CRHInv » Sat Oct 24, 2009 11:57 am

Awesome!! So glad to hear from you. Sounds like things went really well.
Take good care!!
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 kinga » Sun Oct 25, 2009 1:26 am

Congratulations Rose!
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Postby magoo » Sun Oct 25, 2009 6:29 am

So glad you're feeling better Rose! That nausea is horrible, right? I had 2 stents. One on each side at the jawline. I am home now and feeling better too. I have had improvement in my legs, my right sided pain, and fatigue. I am still recovering, so I'll take it slow. You too! Be well.
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 Rose2 » Tue Oct 27, 2009 1:24 pm

I am baaack!!! Boy, what a week will do!!
Rhonda, so glad you are home already. good girl!
Radeck, I hope to meet !
Cheerleader, thanks for the Azygos vein word, tho I probably still have it wrong. I just cannot get it right.
Thanks to ALL of you for your support and energy and wishes and prayers. Truly thank you.
Ok, Today is one week post op. It is the first day I can open my right eye enough (ligh sensitivity and headache) to put on my glasses to see.
I took a shower and got dressed and went in for my first INR. Waiting for those results.
Still have a very bad 'headache' entire right side of head' neck, ear, eye, and top of head right side. BUT BETTER!!
I am eating everything I need to and have worked my way up to one regular Tylenol 2x/day. Remember I went off all pain meds in the hospital from my nausea, which the nurses said was very unusual from their short experiences with this.
I really take my hat off to the nursing staff at Stanford. Top Notch in my opinion.
There is one thing I do want to say. I DO NOT FEEL MY MS!!
Yes, I have pain from surg, etc, but I do not feel, and knock on wood here, the MS.
When I say that, I mean that crap MS fatigue in the morning when I wake, the sweating I generate to get a dish out of the dishwasher,
etc. I know. It has only been a week and my activities are limited BUT damn, I swear, I hope I am not imaginging this, but I feel BETTER!!
I do not like to say things out loud because I wtih MS I feel like I am always eating my words, but this is different.
I do not have the words to describe it, because I don't have enough time under my belt yet, but if I had to I would say I feel 'Good to Go.'
My right foot is still tingly from last month's attack but my left arm that has constant pain is at a ZERO. Ok, now I knock on wood.
Thank you all again for your amazing information, research, hours of typing in for all of us. This is good.
Sincerely, Rose
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