Cece's turn

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

Postby Cece » Mon Apr 04, 2011 7:18 pm

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


Jealous!

I have more hope now, with the talk of grafting and recanalizing and rendezvous procedures even on older clots, that the doctors will figure something out. We'll get you in the club yet, pklittle, even if we have to build the way. Dr. Zamboni's team has done ten surgical jugular reconstructions! Who knows what else is possible.

edited to add: I wrote up a long update tonight, it is on page 30: www.thisisms.com/ftopicp-159569.html#159569
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Postby HappyPoet » Thu Apr 07, 2011 5:45 am

Cece wrote:Improvements: ...
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.

To me, this is the best part of your post! So happy for you and them :D
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What kind of sedation?

Postby dk » Sun Apr 17, 2011 12:54 pm

Cece,

I know Dr. Sclafani needs to keep the patient pretty alert during the procedure. Can you tell me what kind of sedation was used when he did yours? Could you feel the catheter moving around your veins? Was it painful, and if so was it only when he expanded the balloons? (can you tell I'm a bit of chicken)

Thanks!

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Re: What kind of sedation?

Postby Cece » Sun Apr 17, 2011 2:32 pm

dk wrote:Cece,

I know Dr. Sclafani needs to keep the patient pretty alert during the procedure. Can you tell me what kind of sedation was used when he did yours? Could you feel the catheter moving around your veins? Was it painful, and if so was it only when he expanded the balloons? (can you tell I'm a bit of chicken)

Thanks!

dk

There was no sedation but if you needed it, I'd think you could ask for it. (Has anyone here had sedation from Dr. Sclafani?)

At the very beginning, when he was getting the catheter set-up in place, that was uncomfortable plus I was chicken too so that may have amplified my worries of what was to come. But then it went through my veins without me feeling a thing. Just as was promised, over a year ago, with the whole 'veins don't have nerves on the inside of them' discussion in one of his very first posts here at TIMS! He was right, that part was nothing. I was surprised when he had it in place in my jugular already, in fact I moved and messed up the guide wire, but he was able to fix it and I held still from then on!

So up to that point, the only discomfort was the initial insertion of the catheter at my femoral vein. Then the ballooning, for me, was indeed painful! He gave a shot of fentanyl, a narcotic, right before the ballooning. It definitely took effect, I felt woozy and was concentrating hard to make sure I didn't miss anything. I had waited a long time for this procedure and admittedly am an enthusiast of all things CCSVI! Didn't want to miss anything.

It's hard for me to separate out the pain in my neck from the ballooning on that RIJV from the discomfort/pain in my head at the same time, because my other jugular was completely blocked so when he cut off the blood flow with the balloon, all flow was disrupted. I don't know how long that ballooning went. maybe a minute? That was it, that was the worst one. He ballooned again there, then was satisfied with the flow. He moved on to the LIJV and I was already experiencing improvements, it was shocking, when he stopped ballooning the RIJV, my head cleared from the fentanyl or also just cleared in general and my hearing improved.

He gave a shot of fentanyl again before doing the LIJV. The LIJV ballooning was unpleasant but far more tolerable than the first in the RIJV. He ballooned twice there as well, as far as I can recall, then checked the other veins out, then all was done. And I immediately had the surprise of my life with all the colors. Other people have described it as "colors are more vibrant" or "it was like going from SD into HD." I recognised what I was experiencing from those previous descriptions but for me, it was extreme. The brightest shades of colors were ones that I had never seen before, while everything else was colors I had seen but never was everything so saturated like that. My favorite color has always been red; now my favorite color is blue, like my children's eyes, while red is too intense. Two months later, with spring arriving, it is getting brighter out there and I am again surprised.

So the procedure, while not nothing, was tolerable for me with only the initial insertion of the catheter being uncomfortable and the ballooning itself being painful, and the ballooning was very short-lived (4x, maybe a minute each) with only the first one being particularly bad.

There was also soreness and pain in my neck that came on that evening but Tylenol was enough to keep it in check. That pain lasted for a week and then was gone on my right side and lasted over a month and is mostly gone on my left side.

Do you have the procedure scheluded, dk? Sometimes the worrying is the worst part!
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Postby dk » Sun Apr 17, 2011 7:24 pm

Cece,

Thank you for such a thorough response. I thought you hadn't mentioned anything about sedation. I don't remember the part about not being able to feel things inside veins. Somehow I missed that and I thought I had read every one of Dr. Sclafani's posts. That is quite a relief! I don't have the procedure scheduled yet but I went for the doppler ultrasound last week. I live within driving distance (about an hour depending on traffic) to Dr. Sclafani. I feel very fortunate that the best person there is to do this procedure happens to be so close.

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Postby Cece » Sun Apr 17, 2011 7:48 pm

That is good fortune. :)

He is fortunate too when he gets a local patient, he can keep tabs on you afterwards.

www.thisisms.com/ftopicp-98253.html#98253
The leg is the best location up near the groin, because the vein is just an inch or two deep to the skin and readily hit by the small needle that is used. Since we are below the veins involved in CCSVI, the jugular veins and the azygous vein, we must traverse the right atrium of the heart to get to them. Sounds scary but actually that is a relatively easy part of this generally easy procedure. The catheter (tube) we use is very thin, measuring less than a twelfth of an inch in diameter. It is visible on xray so we can find our way. The catheters have different tips with varying curvatures that help get into the veins. Because there are no pain fibers on the inside of the vein, moving the catheter in the veins is painless.

From his first post, which surprised the heck out of me, because it was in response to me asking HappyPoet how they get the catheter to jugulars without going through the heart, and she had some questions too, and we both said things like, "Maybe someone will come along with the answers," and "I wish I knew." I was already on Dr. Sclafani's waitlist when he turned up here on TIMS. By the time I got my procedure this February, I was two weeks shy of having spent a full year on his waitlist and admittedly was getting a bit antsy!!
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Postby bestadmom » Mon Apr 18, 2011 5:57 am

Dk, being local is great. I'm an hour too. It's easier to not spend so much time at the hotel and nice to know dr. S is nearby. He's always near by on cyberspace but the physical proximity is a bonus.
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Postby Cece » Fri Apr 22, 2011 7:45 am

Update: 2 1/2 months

Much improved cogfog.
Improved memory.
Much improved fatigue.
Bladder, not as improved as before.
Mild foot drop, improved.
Numbness in left arm, still different (cooler feeling) than pre-procedure but not as good as it was in the early days post-procedure. This returned suddenly a few weeks ago, then improved slowly over five days, but not to 100%.
Ability to exercise, much improved.
Sleep, much improved.
Vision, improved.

In the last week or two, I noticed two things. One was with my driving. It feels safer. When I drive downtown, I've been taking a bunch of local roads until I reach the freeway that is a straight-shot downtown. This takes about five minutes longer than if I use a different route, but that one involves a cloverleaf interchange from one freeway to another, and the merging was too much, with trying to get onto the freeway while other drivers are trying to get off. But in the last two weeks I've switched my route to the quicker one, with the cloverleaf interchange, with zero problems. It's the cogfog improvement and it's nice.

The other thing I have noticed is with my fatigue. I have different fatigue states, from "I'm-dying-fatigue" to "Hurry-hurry-fatigue" which means that if I get myself out the door fast, I can still do what I planned, but if I reach a tipping point, I'll give up on it, and I don't want to give up, so it's hurry-hurry. I mentioned "slow-blink-fatigue" here before, which is a warning fatigue before the downward spiral of "I'm-dying-fatigue." That last one is just as it sounds. This all may sound crazy but when you live with fatigue constantly, it is helpful to differentiate. What is amazing is that I have noticed an entirely new fatigue: "inertia-fatigue." I'll feel fatigued and like not doing much, but it's just inertia, and if I get up and start doing, I'll be able to keep doing.
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Postby Cece » Mon May 09, 2011 2:45 pm

Tomorrow is my three month ultrasound. :)

I am nervous about possible restenosis but I am still continuing to show improvements from pre-procedure:
* mild foot drop gone
* colors are bright, sometimes shockingly so
* no longer feeling ill all the time
* vision improvement
* cogfog dramatically improved
* core strength improved
* appetite improved
* hearing improved

On the other hand...
* arm numbness is gone now, but it had returned last month, after noticeably vanishing in the two days post-procedure
* eyes were pain-free for a month but it did not last
* bladder frequency improvements were short-lived
* fatigue still present, but improved

My left jugular is the one that was 100% closed and it is the one that showed slow flow in the upper jugular at my 1-month check-up. Of the two, I have less faith in my left jugular.

And btw this weekend I dreamed that I had a nice cold silver-and-red can of Diet Coke from the fridge and drank it slowly. I could even taste it. But in the waking world I have been successful at giving them up, thus far.
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Postby NZer1 » Mon May 09, 2011 3:21 pm

All the best for tomorrow Cece.
Hey!, I have to say thanks so much for all the assistance and support you give to all of us here,

YOU MAKE A DIFFERENCE IN THIS WORLD!

Hardly a day goes by without me noticing how your words or help impact people on this site in particular. You are special.
Thanks Cece,
Nigel
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Postby 1eye » Mon May 09, 2011 3:34 pm

Hey I dreamed again last night. A short one. I only remember the ones I wake up from. In the dream, I was sort of sliding on a slippery vinyl floor, the way I used to with socks on. I had a strange line from a Tom Waits poem "The Piano Has Been Drinking" going through my head, with no explanation. "Watch me as I skate out over an entire acre of linoleum."
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Kathryn333 » Mon May 09, 2011 6:44 pm

NZer1 wrote:All the best for tomorrow Cece.
Hey!, I have to say thanks so much for all the assistance and support you give to all of us here,

YOU MAKE A DIFFERENCE IN THIS WORLD!

Hardly a day goes by without me noticing how your words or help impact people on this site in particular. You are special.
Thanks Cece,
Nigel


Well-said, Nigel.

Good luck, Cece.
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Postby munchkin » Tue May 10, 2011 5:16 am

Hope the test goes well.
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Postby HappyPoet » Tue May 10, 2011 10:48 am

Waiting to hear from you!
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Postby Cece » Tue May 10, 2011 12:21 pm

Thanks everyone!! Nigel, that was especially nice to read.

let's see if I can do this justice....

Any doctor appointment always starts with me driving in the opposite direction, to where I have child care arranged. It is ironic that these appointments, necessary because of my health, require a lot out of me. The first challenge is just finding Dr. Cumming's clinic! The directions include such important notes as, "Do not drive down the light rail tracks," (since the light rail goes down the middle of 5th St in Minneapolis, with lanes on either side, and if you pick the wrong lane you won't be able to access the parking ramp, but if you pick the very wrong lane, you'll drive into a light rail train).

And the parking ramp! By the time I see that there is a parking ramp, and the very tiny sign denoting that it is the correct one, I had gone past it, which required a rather long loop around to get back and try again. This beats last time, however, when I never did find the correct parking ramp but parked elsewhere and it all worked out fine.

So, by the time I make it to the clinic, I already consider myself to have passed the cognitive test for the day (barely).

...more in a bit
...both my veins are still open :)
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