Cece's turn

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

Postby MS_HOPE » Sun Mar 20, 2011 3:44 pm

Cece, love your posts of continuing improvements, and reactions of your kids. So heartwarming and hope-inspiring. Keep 'em coming!
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Postby Cece » Sun Mar 20, 2011 7:13 pm

Thanks, MS_HOPE. It is amazing to be experiencing this. I benefit the most, what with feeling well instead of consistently awful, but the family benefits too. I can't tell you how good it feels to be saying yes to the kids when before I'd be saying no. The other day, my daughter showed me a page from a magazine with a recipe for green slime. I said, we have cornstarch, let's make it! She said, really?! It's unusual for me to be able to respond like that, with a quick yes, and follow through. And the slime was indeed slimy.
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Postby CureIous » Sun Mar 20, 2011 7:46 pm

Cece wrote:
A friend asked by pm how to get started with Dr. Sclafani. Here's their website with the registration form at the bottom and the email to send it in:

www.americanaccesscare.com/ccsvi.html

The Del Mar Vein Clinic is part of his network, is that the one you're thinking of?

New improvement noticed this week (one month and one week post-procedure):
Memory improvements. Just one example, tonight while cooking dinner, I could read the recipe to know what four spices were needed in what amounts (curry, cumin, salt and pepper), find them out of the cupboard, and add the right amounts directly without going back to find out what the amounts were again. Normally I have to check back to the recipe in between each and every spice to find out what amount they should be. Memory impairments was something I really noticed after my relapse that got me diagnosed five years ago. It's spooky to notice improvements. I love it but it's spooky. It drives home what I had lost, to have some of it regained.


It is amazing, and believe me it's still an ongoing deal for myself, to realize just how much mental function had been lost, and continues to be regained. Just little .01's added onto the percentages, but they add up to quite a bit over the long haul... Didn't see recipe memorization listed in the cog function tests, but the thing is, for you, it means the world!

Nearly every single day, and I'm not exaggerating, I get a new childhood memory back, and it can be spurred by just looking at a color or hearing a name. Kinda cool too....
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 MS_HOPE » Mon Mar 21, 2011 8:26 am

:D :D , Cece and CurIous.

Hope the neuros are reading this thread....
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Postby fogdweller » Mon Mar 21, 2011 8:56 am

Cece wrote:
A friend asked by pm how to get started with Dr. Sclafani. Here's their website with the registration form at the bottom and the email to send it in:

www.americanaccesscare.com/ccsvi.html

The Del Mar Vein Clinic is part of his network, is that the one you're thinking of?


Thanks, Cece. As always, you are a huge help.

BTW, it is wonderful to hear of the improvements you are enjoying. The loss of short term memory is something I can relate to very strongly, but I have not gotten anything back since my teatment in September last year, but as you know I have very strong suspicions that the veins reglogged at least as bad as originally, and have not yet found out if that is true.
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Postby Cece » Wed Mar 23, 2011 11:37 am

Update:
I had an early doppler scan yesterday, as I mentioned in another thread, and it showed no clotting where the valves were both ballooned! I had really gotten to worrying, particularly knowing what has happened to some friends here and because of some recurring pain in my left neck, so I am glad it is looking good. It was not a full CCSVI ultrasound, there wasn't an opening for Dr. Cumming for one of those until late April, apparently he is getting busy, which is excellent. I am scheduled for a full ccsvi ultrasound in early May, for my 3 month check-up, and it might be necessary, there is a concern with my left jugular, maybe.

My ultrasound was done by a technician with a young resident doctor overseeing. They looked at my right jugular first and got done quickly. I wasn't able to watch that one, they had me turn my head to the left. Flow was good both high and low. When they were trying to visualize the valve area, the resident thought that there was no trace of it and that it was wide open. All good so far.

Then they moved on the left side. They had me turn my head to the right, which I was wondering if that was the best choice, because perhaps the positioning closed off the flow. They spent much longer looking at the left side. The bottom proximal area near the valve was open, with no sign of thrombosis. I do not know if it is as widely open as it should be? It looked big though.

They spent much more time capturing images on the distal end of the vein, up towards the top of the neck. It narrowed there, with very slow flow. The technician showed me the comparison with what it looked like on the other side, the distal rijv, which had a high velocity and a good size. Over on my left jugular, up high, it had a greatly reduced velocity and a slim diameter.

So what I know is that, lying down with my head turned to the right, my left jugular is narrowed up high. I don't know what it looks like with my head positioned upwards or to the left, if that would've made a difference.

I also know, thanks to Dr. Sclafani's use of intravascular ultrasound, that this high-up area will distend when I hold my breath and therefore does not represent a pathological narrowing at that location.

I wonder if it could be muscle impingement? This is just a guess.
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Postby blossom » Wed Mar 23, 2011 4:16 pm

hi cece, so glad you are seeing improvements. it was wise to get an early doppler. did you get the femoral vein checked?

kinda makes a person want to own their own doppler machine.

keep healing and be well.
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Postby HappyPoet » Thu Mar 24, 2011 4:00 pm

Cece wrote:Update:
I wonder if it could be muscle impingement? This is just a guess.

Cece, here's what Dr. Haskal said in his interview on Australian national radio:

Well that's the interesting thing it's not one specific spot. For example in the jugular vein there's a valve at the bottom and some of these valves appear to be excessively stuck if you will. There are also narrowings in the middle of the vein by the normal carotid artery that goes by it. Higher up in the vein there are bones that compress. It isn't so much that there's one specific cause but rather some shall we say off ramp obstruction to blood flow from the brain. Veins carrying the blood out of the brain, that that off ramp obstruction in some way contributes to; we're not saying it causes but contributes to in some way to MS.

http://www.abc.net.au/rn/healthreport/s ... um=twitter
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Postby Cece » Thu Mar 24, 2011 4:31 pm

Blossom, no, I did not get the femoral vein checked. Yes, I also would love to own my own doppler machine or plethysmography machine! The latter might be easier to figure out. :)

That is something to think about, HappyPoet...

Here's what I meant by the IVUS showing it can open:
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. Unfortunately such narrowings sometimes end up being stented. The IVUS helps me differentiate a fixed stenosis from a physiological narrowing.


Image
This image is a venogram of the left side. I didnt see any reason to show another IVUS but it was similar to that on the right side.

Why would it be narrowed and sluggish up high, if the area of the valve is still open?
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Postby drsclafani » Thu Mar 24, 2011 5:52 pm

Cece wrote:Blossom, no, I did not get the femoral vein checked. Yes, I also would love to own my own doppler machine or plethysmography machine! The latter might be easier to figure out. :)

That is something to think about, HappyPoet...

Here's what I meant by the IVUS showing it can open:
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. Unfortunately such narrowings sometimes end up being stented. The IVUS helps me differentiate a fixed stenosis from a physiological narrowing.


Image
This image is a venogram of the left side. I didnt see any reason to show another IVUS but it was similar to that on the right side.

Why would it be narrowed and sluggish up high, if the area of the valve is still open?


possibilities:
1. there is more flow going to the right side normally
2. your head was turned in a way that the muscles pinched off the vein
3. your tech and resident did not do inspiration and expiration images
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Postby Cece » Fri Mar 25, 2011 11:22 am

drsclafani wrote:
Cece wrote:Why would it be narrowed and sluggish up high, if the area of the valve is still open?


possibilities:
1. there is more flow going to the right side normally
2. your head was turned in a way that the muscles pinched off the vein
3. your tech and resident did not do inspiration and expiration images

Hmm, yes, those seem like reasonable and non-panicky possibilities.
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Postby BooBear » Mon Mar 28, 2011 5:30 am

Cece, I am so glad for you!! Welcome to the club!
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Postby Cece » Mon Apr 04, 2011 5:24 pm

Thanks BooBear, if you stop by again and see this! What a club to have joined. :)
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Postby pklittle » Mon Apr 04, 2011 6:00 pm

Cece wrote:Thanks BooBear, if you stop by again and see this! What a club to have joined. :)


Jealous!
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Postby Cece » Mon Apr 04, 2011 6:14 pm

Update: one month and three weeks post-procedure

Still many noticeable improvements but it is a bit mixed this time.

Improvements:
Foot drop, which was mild to begin with, remains improved. I take the stairs very differently than I did before the procedure! Some of that is from the improved foot drop, some of it is from fatigue improvements.

Cognitive. More clear-headed, better memory, feels so much better.

Fatigue. The scary about-to-collapse hard fatigue has not happened in full since two days after the procedure. I've never gone this long without it. I have however still had daily fatigue, I wish that could've left completely, but at least it is reduced.

Eyes. I am used to having pain in my eyes, but for the first month post-procedure I had absolutely no pain, which is very out of usual for me and very appreciated. I had a return of pain in my right eye for a few days a week ago, but I also had a cold and a fever that weekend, and it has gone away again now. Vision seems clearer but I haven't seen a surreally bright color in awhile. I am still under the impression that the world has been remodelled so that everything is brighter (and that it was done very stealthily and quickly, all on the afternoon of Feb 12) so I would say that improvement remains.

Arm numbness. This is why I am updating today! I am so upset at my left arm. Two days ago the numbness showed up unexpectedly and most definitedly unwelcomedly. It is still present today, in my hand and my elbow and up by my shoulder but not the places in between, which is odd, as previously it was a full fingertips to shoulder phenomenon. But back when I had my procedure, it had completely melted over the first two days post-procedure, it was very remarkable to experience. I am sad that my arm numbness has returned.

Appetite. This remains improved. I had a poor appetite before the procedure, I always felt ill. But I made roasted rosemary chicken and potatoes for dinner tonight and I enjoyed eating.

Heat intolerance. As far as I can tell, this never improved for me. Slightly hot baths still make me feel like I am made of lead and shouldn't move. The weather, however, is perfect for me now, with highs in the 50s.

Exercise. Still completely different. Instead of feeling it in my head, I feel it in my body, but my head is not suffering the way it used to when I exercised. This is a dramatic difference. It is hard to explain too. I went to the gym last Friday and hiking on Sunday, so I could do more, but being reasonably active.

Bladder. Improved. Fewer visits, less urgency.

Conversations. I feel so much more with-it when I run into someone and we make small talk.

Typing speed. Improved. I type faster now! I like it. This wasn't right away but over the last several weeks I started noticing it.

Sleep and dreaming. I honestly can't tell. I think I am sleeping and dreaming well, but I thought so before the procedure, and then was shocked by the changes in my sleep and dreams. I am more able to nap now, previously I would be exhausted but unable to sleep, now when fatigued I've been able to nap and then wake up refreshed. This is better than it was. I think this is an effect on its own but also have quit taking provigil or nuvigil, both of which disrupted my sleep.

Time with the kids. Improved. More patience, less pain, more able to enjoy being together, more able to take time for one-on-ones. I have great kids and they are growing fast.
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