Cece's turn

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

Postby HappyPoet » Fri Jul 22, 2011 6:35 am

Thanks, Cece, for answering my questions about your procedure.

I'm sorry that you experienced "a dip in emotions," BUT you were able to put those emotions into proper perspective with the realization that when you focus on the "right now," the "right now is pretty great." Will you be my therapist the next time I start to become mad and/or sad?

Everyone, here is a link to an excellent anatomical drawing to compare to Cece's excellent actual CT images (not of herself): Hemiazygos and Azygos veins
User avatar
HappyPoet
Family Elder
 
Posts: 1399
Joined: Thu Jul 09, 2009 3:00 pm

Advertisement

Postby Cece » Fri Jul 22, 2011 8:19 am

Lol, HappyPoet, I figure I was just being contrary. A good thing happened (I was not expecting to have restenosed, not to that extent, but it got caught and treated) and I get upset?

It would have been nice if it were a smooth ride for all of us. No restenosis, everyone gets optimal treatment in one time, especially those who are self-paying. But even with partial restenosis on one side, I was much improved over baseline. Even partial liberation is liberating....

I appreciate the link! It shows the hemiazygos on the other side from the azygos. The ascending lumbars are clear, you can see what a role they must play in draining the spine.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Sun Jul 24, 2011 1:37 pm

Six days in a row now of consistent absence of numbness in the left arm.

The numb arm was a relatively new symptom for me. It showed up in June 2010. It has been suggested that when symptoms reverse after venoplasty, it's the more recently acquired symptoms that reverse first.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Cece » Tue Jul 26, 2011 6:48 pm

There have been some talk lately that maybe the first procedure sets the bar for how much improvements can be achieved in any future procedures. This might be true in some or many cases but I don't think it's true in mine. Back in February, my left arm numbness retreated but I was still having odd sensations in the arm (tingles, discomfort, it's hard to describe!). This time, the numbness is gone, there are no odd sensations, and just as I can say my right foot that formerly had residual foot drop is now equal to my left foot that never did, my left arm is feeling equal to my right arm. At no point in the last year, even after my procedure in February, would I have said that. I hope it lasts.

More to say later about fatigue, cogfog, overstimulation, exercise, and colors colors colors.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Vivianne766 » Wed Jul 27, 2011 4:25 pm

Cece wrote:There have been some talk lately that maybe the first procedure sets the bar for how much improvements can be achieved in any future procedures. This might be true in some or many cases but I don't think it's true in mine. Back in February, my left arm numbness retreated but I was still having odd sensations in the arm (tingles, discomfort, it's hard to describe!). This time, the numbness is gone, there are no odd sensations, and just as I can say my right foot that formerly had residual foot drop is now equal to my left foot that never did, my left arm is feeling equal to my right arm. At no point in the last year, even after my procedure in February, would I have said that. I hope it lasts.

More to say later about fatigue, cogfog, overstimulation, exercise, and colors colors colors.


wh....aaaaaat? Footdrop? I have that problem too and it just seems that it won't ever go away. But now I have some hope. I am tired and excited and... mixed feelings, plus this darn neck pressure that just won't let go.
so happy to hear about any good results from anyone. Health to us all.
:) I'm preparing for my trip to Brooklyn.
User avatar
Vivianne766
Family Elder
 
Posts: 157
Joined: Sun Mar 07, 2010 4:00 pm

Postby Cece » Wed Jul 27, 2011 5:10 pm

Hugs, Vivianne. Say hi to Dr. Sclafani for me. I hope you get amazing results.

I was diagnosed with foot drop during the relapse that led to my MS diagnosis. Now, the neurologist never called it spasticity, leading to some confusion on my part: is foot drop the same as spasticity?

My foot improved several months after that relapse, but not back to baseline, and this was my leg that I'd had some issues with going back ten years before. My foot drop was still noticeable at the end of a long walk or going up the stairs or sometimes just at random. In all future neuro exams, I passed the foot drop portion of the exam. So I've called it minor, I've called it residual, I hate calling it straight-out foot drop in case it raises hopes, but it was definitely an issue for me and a pain in the ***. If there was a body part that frustrated me, it was my right foot. If I stumbled, it was my right foot. If I limped after overdoing, it was my right foot. If I was scared about my MS getting worse, it was my right foot as a reminder or a harbinger.

I had the procedure done in February, I noticed an early gait improvement just in the way it lined up better when walking, and then three months post-procedure, in May, the issues were just gone.

I expected cogfog to be gone, I expected fatigue to be gone*, and they weren't, although they were better. I did not expect my right foot issues to be gone, ever. You get used to stuff like that. It had been that way for over five years. It was definitely neurological, not vascular.

I have since done far more walking that what it would've taken to set that foot off, and nothing.

* it is too early to make the call but this week I have noticed cogfog and fatigue improvements, following my second procedure two weeks ago. Serious cogfog improvements. Fingers crossed.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby Vivianne766 » Wed Jul 27, 2011 5:30 pm

Cece wrote:Hugs, Vivianne. Say hi to Dr. Sclafani for me. I hope you get amazing results.
...



I have since done far more walking that what it would've taken to set that foot off, and nothing.

* it is too early to make the call but this week I have noticed cogfog and fatigue improvements, following my second procedure two weeks ago. Serious cogfog improvements. Fingers crossed.


so happy to hear about your improvements. I've got my fingers crossed too.
:)
User avatar
Vivianne766
Family Elder
 
Posts: 157
Joined: Sun Mar 07, 2010 4:00 pm

Postby lovebug » Wed Jul 27, 2011 5:54 pm

CECE--I have my fingers,toes and anything else I can cross over for you. Hoping the second holds for you girl. And thank you for all the time and research you do for ALL of us on TIMS.........
User avatar
lovebug
Family Elder
 
Posts: 170
Joined: Fri Jan 01, 2010 4:00 pm
Location: Canada

Postby Cece » Thu Jul 28, 2011 6:52 pm

Your finger-, toe-, knee- and nose- crossing are paying off, I think, although who knows how long it will last? But here is what I have to report: three days ago, on Tuesday morning, my minute-to-minute functioning improved by quite a degree. And it has stayed that way since then. Why Tuesday morning, two weeks post-procedure? Why so sudden? Why not after the first procedure, back in February? I don't know. But this covers cogfog and fatigue. It is very different than my norm, in a good way. The best way I could describe it is it's as if I was at a really loud concert, for however many years, and then on Tuesday morning the band finally went home to sleep it off. There is an absence that is palpable.

I could try to describe it further but it is hard to describe and, also, let's see if it lasts. If it does, it is remarkable.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Re: vein images

Postby NHE » Fri Jul 29, 2011 8:34 am

HappyPoet wrote:Everyone, here is a link to an excellent anatomical drawing to compare to Cece's excellent actual CT images (not of herself): Hemiazygos and Azygos veins


The url you posted doesn't seem to work. Are these the images you meant to link to?

veins on the posterior thoracic wall

hemiazygos vein


NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3144
Joined: Sat Nov 20, 2004 4:00 pm

Postby drsclafani » Fri Jul 29, 2011 2:11 pm

Cece wrote:Your finger-, toe-, knee- and nose- crossing are paying off, I think, although who knows how long it will last? But here is what I have to report: three days ago, on Tuesday morning, my minute-to-minute functioning improved by quite a degree. And it has stayed that way since then. Why Tuesday morning, two weeks post-procedure? Why so sudden? Why not after the first procedure, back in February? I don't know. But this covers cogfog and fatigue. It is very different than my norm, in a good way. The best way I could describe it is it's as if I was at a really loud concert, for however many years, and then on Tuesday morning the band finally went home to sleep it off. There is an absence that is palpable.

I could try to describe it further but it is hard to describe and, also, let's see if it lasts. If it does, it is remarkable.


while we have all been speaking about trying to fix this with one procedure, i have been mulling around the idea of a second treatment 3-6 months after the first empirically as a second stage of a procedure rather than as a restenosis treatment. I wonder whether you can actually stretch and tear things open in ond phase. I havent done it yet.
User avatar
drsclafani
Family Elder
 
Posts: 3101
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby Cece » Fri Jul 29, 2011 3:30 pm

drsclafani wrote:while we have all been speaking about trying to fix this with one procedure, i have been mulling around the idea of a second treatment 3-6 months after the first empirically as a second stage of a procedure rather than as a restenosis treatment. I wonder whether you can actually stretch and tear things open in ond phase. I havent done it yet.

Under such a plan, you'd have dilated my right jugular while you were in there even though it wasn't showing signs of restenosis. If you are successful now at precisely measuring vein size and are not seeing intimal hyperplasia or thrombosis, the risk of such a treatment should be small.

It's an intriguing idea.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby CD » Fri Jul 29, 2011 11:07 pm

drsclafani wrote:
while we have all been speaking about trying to fix this with one procedure, I have been mulling around the idea of a second treatment 3-6 months after the first empirically as a second stage of a procedure rather than as a restenosis treatment. I wonder whether you can actually stretch and tear things open in one phase. I haven't done it yet.


Why fix the wheel if it isn't broken?

I can see getting a Venogram 3 to 6 months after, depending if the patient is off the anticoagulation's or blood thinners by then, just to have a look-see into the veins.

Like a good three/six month check-up, instead of the Doppler Ultrasound.

If any problems that need tweaking, or more, then the patient is already on the table. But to balloon areas with good flow, is that not pushing the envelope Dr.?
Just my opinion, FWIW.
CD
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
User avatar
CD
Family Elder
 
Posts: 217
Joined: Sun Dec 19, 2010 4:00 pm
Location: USA

Postby Cece » Sat Jul 30, 2011 6:18 am

Maybe the wheel is broken?

If we are talking specifically about stenosis of the valves, which is where 75% of narrowings occur, then maybe a second ballooning while they're down is a way to keep them down. We are going for the knockout....
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Re: vein images

Postby Cece » Sat Jul 30, 2011 8:40 am

NHE wrote:hemiazygos vein

This is the one that came up for me when I clicked on HP's link. But it didn't work for everyone? Thanks NHE for adding these too.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 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