My Friend, Mary

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

My Friend, Mary

Postby Sharon » Fri Aug 28, 2009 8:15 pm

Mary had her surgery yesterday..blockage high up in the left jugular vein (I think I said right jugular in another thread -oops!). She is resting comfortably at the Sheraton tonight. Mary had some nausea to deal with, but seems to be over that now. The forum has talked about how Dr. D is learning, and changing his protocal. Well, Mary is his first patient being sent home without Coumadin! How lucky is she? So maybe some of you future "stenters" will be bruise free. Maybe he didn't like seeing all the black and blue spots that Marie and I showed up with when we went back for our follow-up :wink: :)
Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Advertisement

Postby prof8 » Fri Aug 28, 2009 11:11 pm

Now that is the best news I have heard yet. No Coumadin!!
User avatar
prof8
Family Elder
 
Posts: 189
Joined: Sun Jul 13, 2008 3:00 pm

Postby Loobie » Sat Aug 29, 2009 4:59 am

Oh that's awesome. I hate that crap.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Sharon » Sat Aug 29, 2009 5:59 am

I should have mentioned that Mary will be on the baby aspirin and Plavix

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby LR1234 » Sat Aug 29, 2009 7:41 am

I read something somewhere the other day about Plavix only working on some people and not on others...something to do with genetics
LR1234
Family Elder
 
Posts: 1501
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby catfreak » Sat Aug 29, 2009 7:49 am

That is wonderful. So glad your friend Mary is resting.

I can't wait to see what he chooses for me next week!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Re: My Friend, Mary

Postby Rokkit » Sat Aug 29, 2009 8:44 am

Sharon wrote:Mary is his first patient being sent home without Coumadin!


Does that mean stents would be much more likely to need cleanup at the 8 week checkup?

Rokkit
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby Sharon » Sat Aug 29, 2009 12:53 pm

Rokkit -
Does that mean stents would be much more likely to need cleanup at the 8 week checkup?


No, I seriously doubt it. He does not want to put the patients back on an operating table at 8 weeks. When I went for the procedure, he told me that he was being overly cautious about the blood thinners. He really did not think at that time we needed the Coumadin. Maybe a person's INR will determine whether he puts them on Coumadin.

Cat will be there next week...maybe she can get the answers from Dr. D.--okay, Cat?

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby cheerleader » Sat Aug 29, 2009 1:14 pm

Just as every patient's stenosis is different, every patients' blood issues will vary. Jeff has hypercoagulation issues, like Marie. The coumadin was helpful in his instance. Even with it, he developed a thickening in the lining of his left stent. Since the balloon procedure and finishing with the coumadin, he is now on serrapeptase, nattokinase and a variety of proteolytic enzymes to keep the fibrin and protein in his blood low. And we will keep our eyes on his SED rate and INR, to make sure his blood is flowing. But he has always had coagulation issues.

For other people, this won't be part of their profile...I would suggest that folks know their INR and coagulation numbers before going to Stanford, and have their GPs follow up with them when returning home. This is something to discuss with Dr. Dake, Cat....Sharon's right. Marie was right on with her doc and follow-up, and she still had issues with the coumadin.
we're still learning....
cheeer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby catfreak » Sat Aug 29, 2009 1:46 pm

Sharon wrote:

Rokkit -
Quote:
Does that mean stents would be much more likely to need cleanup at the 8 week checkup?


No, I seriously doubt it. He does not want to put the patients back on an operating table at 8 weeks. When I went for the procedure, he told me that he was being overly cautious about the blood thinners. He really did not think at that time we needed the Coumadin. Maybe a person's INR will determine whether he puts them on Coumadin.

Cat will be there next week...maybe she can get the answers from Dr. D.--okay, Cat?


Cheer wrote:
This is something to discuss with Dr. Dake, Cat....Sharon's right. Marie was right on with her doc and follow-up, and she still had issues with the coumadin.


I will surely ask Dr D about this. I took Plavix for about 2 years when my Neuro worried that I may have some vascular issues. It worked very well for me so not taking the coumadin would be a plus.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 3:00 pm
Location: Mississippi

Postby Arcee » Sat Aug 29, 2009 1:59 pm

Sharon, very happy for your friend Mary ! It sounds like she and I had the stent placed in the same location.

I am still on the Coumadin but off the Plavix and I am bruising, much, much less.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 4:00 pm
Location: Massachusetts, USA

Postby mrhodes40 » Sat Aug 29, 2009 5:57 pm

Just to add: I actually got a blood clot in my leg while ON coumadin!! but nothing in my stents.

My doc said that coumadin not only blocks your clotting factors but it ALSO blocks the factors that dissolve one once it gets started. THAT is where my clot came from, I whacked the back of my calf and damaged the vein which then bled out into my whole lower leg below the knee--all blue. The place where it whacked formed a clot, that totally blocked the vein and took forever to start to resolve. I still have a lump there....

but that's me. The coagulation queen for some time I ended up with a very complex regimen that others will not need and geez with no coumadin now....

Well I always said this treatment would evolve and those coming later would get something different.......... :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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users