Cece's turn

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

Postby msgator » Sun Feb 13, 2011 2:11 pm

All the best to you Cece. Can't wait to see your posts with your new post procedure perspective.

Neck pain, I had an 18 mm balloon in my RIJV myself and was sore for several days, but it gradually got better.

I also believe firmly in staying "supine" as much as possible for the first few days to ensure good blood flow during the healing process. I am now just about 4 mos out from my procedure and had good flow during both my 1 mos and 3 mos follow up.

RIJV is still only 7mm in diameter, but flow is good so we are leaving it that way for now.

:)

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
User avatar
msgator
Family Elder
 
Posts: 103
Joined: Wed Mar 17, 2010 4:00 pm
Location: USA

Advertisement

Postby shoosh » Sun Feb 13, 2011 3:44 pm

So Happy for you CeCe! Just rest relax, try not to over do it, though that to can be hard, drink lots of water and enjoy the changes! :D
User avatar
shoosh
Newbie
 
Posts: 8
Joined: Sun Feb 28, 2010 4:00 pm

Postby drsclafani » Sun Feb 13, 2011 3:58 pm

CCSVIhusband wrote:
drsclafani wrote:Image
This set of images is from a bit higher in the vein where there is a transition in diameter of the vein (Left image red arrows). The two IVUS images in the center are at exactly the same location. One shows almost no lumen to the vessel, measurning less than 3 millimeters. When Cece breathed deeply out, it is clear that this is not a stenosis but a phasic narrowing, much like what happens when any healthy person is upright. It does not need to be dilated and dilation will likely have no effect. Often such narrowings end up stented.


Are you saying such narrowings "should be" stented - if they don't hold up to angioplasty? And in this specific case, is it likely a stent MAY be needed in the future?

OR are you saying such narrowings are often stented by other doctors ... but shouldn't have been in the first place?

OR are you saying something I'm missing the point to?

Are you coming around on the use of stents (if there were better stents) in some cases?


ouch!

i am saying that these are phasic narrowings that should be considered physiological. that IVUS helps to show that they should not be treated when we see their dynamic nature. This dynamism is the same as standing up and having the jugular veins collapse

I call this a leave me alone lesion.

i am not coming around to stenting at this time. If, we find that stenting has better outcomes and prolongs time to disability, then i would change. If angioplasty alone restenosis quickly more than a couple of times, i would consider stenting as a late option.
User avatar
drsclafani
Family Elder
 
Posts: 3101
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby CCSVIhusband » Sun Feb 13, 2011 4:35 pm

Thanks :)


Understood.

I thought that's what you were trying to say ... just curious.

So any input on that azygous from 1/3 from any colleagues? with a similar phasic narrowing - just in a different vein? the opening and closing is normal in that case?
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby Cece » Sun Feb 13, 2011 4:38 pm

pklittle wrote:Cece, I am so happy for you that all went well! I am so shocked to read of the severe ijv blockages though. Did your pre-screening tests reveal that?

Dr S, I am glad all went well with your #1 fan, Cece :) and btw it was a pleasure to meet with you this past Monday. thank you very much!

Here is my MRV, let's compare.
#1 fan always reminds me of Stephen King's book, Misery...perhaps I could be the #2 fan, that is still very up there....
pklittle, you met with Dr. Sclafani on Monday??? If he can make things better for you I would be so happy....
Image[/img]
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 4:42 pm

Here's another angle on one of my jugulars, not sure which:
Image
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 4:48 pm

Image
azygous of unusual size
that black indent down low still worries me

to give credit, these mrv images were done at Dr. Cumming's facility in Minneapolis.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 5:08 pm

drsclafani wrote:Yes Cece
although you have a copy of the images, perhaps it would be good for you and your fans to review here as you suggest.

The sequence was as follows
1. prep and drape
2. time out
3. cath in left femoral under local anesthesia
4. advancement into right jugular, venogram, ivus, 18 mm angioplasty to thirteen atmospheres, repeat venogram
5. advancement into left jugular, venogram, ivus, angiopasty to 14 mm at ten Atm, repeat venogram
6. advancement into azygous vein, venogram of ascending azygous followed by zero, twenty, seventy and ninety degree views of the azygous arch
7. IVC venogram
8 ascending lumbar venogram

13 atm and 10 atm! Those are not high pressures.

images as follows


Image
This sequence shows the ivus probe on the far left of the screen at the point where these images were taken. The venogram is on the right shows a bad stenosis.

look at the ivus probe! so small.
I didn't know you could compare the two area measurements so easily like that.
My goal has become to stretch the narrowing as much as possible without stretching the area of normal vein above it. That is a great value of the IVUS.

Everything he mentions here, about sparing the vein above the stenosis, and determining that the upper narrowing is phasic and not stenotic, the goal is less damage to our veins.

I've heard the story now, from bestadmom's perspective and from Dr. Sclafani's perspective, of how he was intrigued into CCSVI, but I marvel at how we as a group and I personally have now benefited from his taking an interest in this.

I am in danger of rhapsodizing again, I'd better move on....

more later....
Last edited by Cece on Tue Feb 15, 2011 7:40 pm, edited 1 time in total.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby elliberato » Sun Feb 13, 2011 5:45 pm

congrats cece i hope you reap many benefits. i am curious at what stage your ms was prior to the procedure. are you fully ambulatory? Numbness? Spasticity? How long did the entire procedure take?
thanks for your replies and speedy recovery!

ps. hats off to the original pioneers that were part of Dr Sclafanis learning curve that have allowed him practice to achieve better and better practices!
User avatar
elliberato
Family Member
 
Posts: 82
Joined: Wed Aug 04, 2010 3:00 pm

Postby Cece » Sun Feb 13, 2011 6:51 pm

CaptBoo wrote:Cece, congratulations on getting off the dock and setting sail. May your seas be calm, your sails full and may you forever have dolphins cavorting in your bow wake.


boo

The same for you, CaptBoo.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Re: ccsvi

Postby Cece » Sun Feb 13, 2011 7:08 pm

blossom wrote:well, cece, i just have to let you know once again that you are in my thoughts and prayers big time. if anyone ever researched and made a decisive decision on where, what doctor and when to get the procedure it would be you. i'm sure everything is gonna go great for you.

you going for this procedure for those of us on tims is generating energy and excitement like the fans of the steelers going to the superbowl.

my money is on you "cece" to bring home the trophy and beat that darn stenosis!

thank you, blossom, this means a lot to me.
Take that, you stenosis.....

Today was a beautiful day, much resting and recovering, without stepping foot in Manhattan. Late in the afternoon, we went out to eat a late lunch at a diner nearby, where we sat at the counter to my daughter's delight, and overheard odd conversations. Then we walked onto the Brooklyn Bridge, with the view of the Statue of Liberty on one side and the skyscrapers of Manhattan straight ahead. We only reached the first pinion. I took a picture of my husband, telling him I'd try to get one famous landmark or another in the picture. Then back to the hotel for more recovering. I am glad to have scheduled this day for recovery and another day tomorrow for touring or I'd have been compelled to go to Manhattan today instead of recovering.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby tzootsi » Sun Feb 13, 2011 7:15 pm

Cece, your posts on this forum have been so helpful and interesting. So glad you FINALLY got your turn!!! Hope things continue to improve, and we will be watching your progress. Have a chocolate egg cream while you are in Brooklyn!
User avatar
tzootsi
Family Elder
 
Posts: 360
Joined: Sun Nov 22, 2009 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:19 pm

bluesky63 wrote:I am in such sympathy with you over the three children. As you know, I also have three children to care for, and as a parent going solo I have always felt a huge responsibility with the MS -- both in being there for them and in choosing treatments. I feel so emotional for you going through this. You wrote that this should be available for everyone. That was also my conviction after experiencing my procedure. Aside from any measurable effect on EDSS, I felt so much more *alive* and life was so much more vivid. I felt a combination of grief for the years I had missed, personally and with my children, and joy for what could be possible, for me and for my family and for other people who could experience this procedure.

It was truly a life-changing experience. I am happy beyond words for anyone who can do this. And I am grateful beyond words to the doctors like Dr. Sclafani who dedicate themselves to us and to the advocates who work to make it possible. Don't think that something as simple as vivid vision or a "reduction in fatigue" can't change someone's life and mean just as much as a point on an EDSS scale!

And to anyone who thinks that needing to have this more than once means it's a failure -- on the contrary, it is a brilliant success that anything, anything can bring us back into the kodachrome world. Like when Dorothy steps out of the black and white wrecked house into multicolored OZ and realizes she's way, way over the rainbow. Now *that* is a fine place to be. :-)

beautifully said, bluesky, we are in agreement on all of this.

Upstairs just now, eating dessert with my family, I felt comfortable. It was not the usual enduring.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Feb 13, 2011 7:23 pm

tzootsi wrote:Cece, your posts on this forum have been so helpful and interesting. So glad you FINALLY got your turn!!!

Me too :D :D
Hope things continue to improve, and we will be watching your progress. Have a chocolate egg cream while you are in Brooklyn!

a chocolate egg cream - is this a Brooklyn delicacy?
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby tzootsi » Sun Feb 13, 2011 7:42 pm

Cece wrote:
tzootsi wrote: Have a chocolate egg cream while you are in Brooklyn!

a chocolate egg cream - is this a Brooklyn delicacy?


I haven't been to the New York area in many years, but I had many chocolate egg creams at various soda fountains there. A chocolate egg cream is a concoction of chocolate syrup, seltzer, and milk- very delicious!
User avatar
tzootsi
Family Elder
 
Posts: 360
Joined: Sun Nov 22, 2009 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users