Cece's turn

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

Postby Cece » Sat Jul 30, 2011 7:56 am

CD wrote: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.

This would have worked to catch my left jugular restenosis that had otherwise been missed.

"Follow-up venogram with IVUS" is what I had done....it was a good decision.
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Postby 1eye » Sat Jul 30, 2011 8:58 am

Cece wrote: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.


re: footdrop - there is a single muscle, believe it or not, in your inner calf, which controls dorsiflexion, which is what you do when you raise the front part of your foot at the ankle.

In footdrop this muscle becomes weak. My left one has atrophied to where it is almost non-existent, through complete paralysis of that muscle, and the almost continuous wearing of and AFO leg brace for six or seven years.

That one muscle is the major reason I can't walk. It has had far-reaching effects, on my hips, core muscles, left knee, etc.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby npost999 » Sat Jul 30, 2011 1:40 pm

I've been away a couple weeks and was reading back...did I see correctly Cece that you had your sinus veins ballooned on this second procedure? They were not done originally correct?

Has Dr. S done this on many patients yet? If so do you know how the results are looking post-procedure?

Thanks and I hope you are doing well and keep doing great.

NP
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Postby Cece » Sat Jul 30, 2011 4:49 pm

1eye, it's hard to believe. One muscle. I have my specific foot drop exercises (up and down, with my toes on the edge of a stair and my heels over the edge). I do it occasionally but it tires out my foot. Which I suppose is the point.... I can't recall if I'd tried it since May, though.

You would think, if it's just one muscle (and the nerves to that muscle), it could be solved....it's hard to read that this is what's caused such trouble for you.
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Postby Cece » Sat Jul 30, 2011 5:00 pm

npost999 wrote:I've been away a couple weeks and was reading back...did I see correctly Cece that you had your sinus veins ballooned on this second procedure? They were not done originally correct?

Has Dr. S done this on many patients yet? If so do you know how the results are looking post-procedure?

Thanks and I hope you are doing well and keep doing great.

NP

Welcome back, NP....

No, while he checked the dural sinuses, it was found that my dural sinuses are healthy. No treatment was needed there. Originally I did not have this checked because it was before he was doing this as part of the standard procedure.

As far as I know, he has only found a dural sinus abnormality in one patient. It was a clot and he was able to flush it out.

Wait, I think there was another dural sinus abnormality too, where there was flow in the jugular deceptively but it was not coming from the sinuses but from some other vein. (What vein? I do not know.) This may have been the same patient.

I am doing really well. Like, shhhh, let's not talk about it too much just yet because I am doing so well I am afraid to jinx it.
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Postby npost999 » Sun Jul 31, 2011 8:02 am

Cece wrote:
No, while he checked the dural sinuses, it was found that my dural sinuses are healthy. No treatment was needed there. Originally I did not have this checked because it was before he was doing this as part of the standard procedure.

As far as I know, he has only found a dural sinus abnormality in one patient. It was a clot and he was able to flush it out.

Wait, I think there was another dural sinus abnormality too, where there was flow in the jugular deceptively but it was not coming from the sinuses but from some other vein. (What vein? I do not know.) This may have been the same patient.

I am doing really well. Like, shhhh, let's not talk about it too much just yet because I am doing so well I am afraid to jinx it.



Thanks for the info on the sinuses, if what I was told by the ultrasound tech is correct then I've got reflux in my sinuses that were not looked at originally during my procedure. I'm trying to be patient to see what happens if I see any improvements, but I'm also waiting to see what more the doctors learn before I go for a second time to check the sinuses & to see if the left IJVs will improve.

Also totally understand keeping the talk on the downlow concerning improvements...I'll knock on wood, throw salt over my shoulder, do whatever I need to do so as not to jinx you.

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Postby David1949 » Sun Jul 31, 2011 10:38 am

Cece I've been on vacation for a week but now that I return I see your Betty Boop avatar has been replaced by a photo of an attractive lady. Is that the real Cece?
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Postby Cece » Sun Jul 31, 2011 10:57 am

Yes, that would be me. Thank you for the compliment. ;)
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Postby Cece » Sun Jul 31, 2011 11:07 am

Thanks for the info on the sinuses, if what I was told by the ultrasound tech is correct then I've got reflux in my sinuses that were not looked at originally during my procedure. I'm trying to be patient to see what happens if I see any improvements, but I'm also waiting to see what more the doctors learn before I go for a second time to check the sinuses & to see if the left IJVs will improve.

Dr. Sclafani has said in his thread that he is not aware of other ccsvi doctors checking out the sinuses. He uses a smaller guidewire so it is safer and more comfortable (it is actually the guidewire for IVUS).

However couldn't reflux in the sinuses be a result of blockages in the upper or lower jugular on the same side? Dr. Sclafani's most recent case showed reflux in the sinuses crossing all the way over to exit through the jugular on the far side! But the cause was a jugular blockage, down at the area of the valves.
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Postby David1949 » Sun Jul 31, 2011 8:06 pm

Cece wrote:Yes, that would be me. Thank you for the compliment. ;)


I think you are without doubt the most prolific author at TIMS. It's nice to finally have a face to attach to the words. And it's definitely an improvement over Betty. :-)
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Postby Cece » Sat Aug 06, 2011 12:06 am

Thank you David. :)

If anyone else picks up Betty, please be good to her.
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Postby Cece » Tue Aug 09, 2011 12:44 pm

I am around the one month mark since my second procedure. Everything is going well.

* I cannot tell if the colors have lost any of their brightness or not. They are still bright but maybe not as bright, it's hard to tell. The brightest colors look unnatural to me. At first I thought flowers were really beautiful and I still do but it is a bit much. There is a thin line between 'this is beautiful' and 'this is surreal, it hurts.' The produce department at the grocery store is another place where unnatural (natural) bright colors are plentiful. Sometimes clothing really jumps out too.

* Cogfog was reduced after the first procedure but still sadly present. After the second procedure, it is dramatically better. It's so much better, I can take it for granted on any given day, my abilities are just there. I am afraid of losing it.

* My memory is better.

* My fatigue is better. But still present. I have three young kids though so there may be a limit to how good it can get. Before the procedure, there really was no limit to how bad it could get...that has definitely changed. I've also had severe CCVSI for a long time and the MS that goes with it. I am sure some of my fatigue is due to neurological damage. Maybe, if CCSVI treatment truly has corrected things, healing will continue. I am also looking at diet, exercise, sleep, stress, if those might be factors too.

* My heat intolerance is gone if the temperature is in the 80s. But it is present if the temperature is in the 90s. The temp was high but dropped in the last few days and it made a difference for me for it to not be so high. I normally do not feel as well as I do right now at this time of year, ever. I love September and October. But maybe now I love June, July and August too.

* My left arm numbness is still entirely gone. It's a little spooky.

* My right leg/foot drop/hip pain surfaced for a day and went away again. It was really hot out, that may have been a factor? I worry though because I have been getting used to it being gone. It's never been gone, not in over five years. So for it to be back, even for a day, is a reminder that it could come back for good. I had been thinking about getting back onto Copaxone as soon as the summer season was over (so my copaxone welts don't show under fall/winter clothes and it's an arbitrary time to give me a little more time before starting up) and staying on Copaxone.

* Bladder improvements, which I had for a very short-lived time after the first procedure, so short-lived that I wasn't sure whether to count it or not. But, with it happening again, it counts. This just means fewer trips to the bathroom and less retention.

* Not taking Provigil or nuvigil on summer days. This is very unusual, to be able to get away with not taking it or taking very small doses. Usually summer is when I need the full dose and don't suffer any insomnia as a side effect. Now, it's small or no doses, and I have to be careful or it does affect my sleeping.

* Breath control when drinking water is improved. This happened after the first procedure too and I noticed when it went away. It's such an odd small thing. I don't have to stop to breathe when I normally would have to.
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Postby npost999 » Tue Aug 09, 2011 12:59 pm

Cece wrote:
* Breath control when drinking water is improved. This happened after the first procedure too and I noticed when it went away. It's such an odd small thing. I don't have to stop to breathe when I normally would have to.


Good to hear some symptoms are not back and your doing OK. I wanted to comment on your breath control while drinking. I have noticed that I have a hard time breathing while drinking...this may have come on in the past year or so. I try to take a big drink of water when thirsty and about lose control of drinking b/c I am out of breath (I can feel it in my chest) & it feels like to me I'm underwater say in a pool running out of air and have to surface to get a big breath. I know that I used to be able to chug water, beer whatever without feeling like I was out of breath. Chug like a pitcher of beer w/ no issues, so I know this is new.

Interesting that you include this with your CCSVI, has this been stated before as a symptom of CCSVI?? Or just an observance.
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Postby Cece » Tue Aug 09, 2011 1:07 pm

npost999 wrote:Good to hear some symptoms are not back and your doing OK. I wanted to comment on your breath control while drinking. I have noticed that I have a hard time breathing while drinking...this may have come on in the past year or so. I try to take a big drink of water when thirsty and about lose control of drinking b/c I am out of breath (I can feel it in my chest) & it feels like to me I'm underwater say in a pool running out of air and have to surface to get a big breath. I know that I used to be able to chug water, beer whatever without feeling like I was out of breath. Chug like a pitcher of beer w/ no issues, so I know this is new.

Interesting that you include this with your CCSVI, has this been stated before as a symptom of CCSVI?? Or just an observance.

It's just an observance but you describe it exactly. I have not heard any of the CCSVI docs describe it as a CCSVI symptom. But it improved after my first procedure, came back (presumably when I restenosed on one side), and improved again after the second procedure. I'd forgotten about it too enough that I was surprised when I took a drink of water and kept on drinking.

There was a post recently about breath restriction and I wonder if I should get tested. Breath restriction is rare, according to the recent poster, and it could be due to connective tissue disorders. I don't fully understand and I'd rather not have a connective tissue disorder. But I still have problems with feeling like I'm out of breath when I'm reading to my kids.
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Postby CD » Tue Aug 09, 2011 11:24 pm

I had the swallowing test done standing up in front of a large fluoroscope. I drink their stuff slowly, then faster while standing, then sitting, and then laying down with a straw.

That one I can't do well at all. They give thick stuff and then water-like stuff to drink. Yucky stuff, no favors. :)

I choke or it feels like I can't swallow at all at times. I have to wait it out, or I feel like I am drowning or going to choke and lose my breath. Which I have done many times trying to drink steady without a let up. Just a few sips is okay.

The test results came back as "Spasticity of the Esophagus." My peristalsis stops for a moment, locks up as it spasms. It is close in location area to the MS hug muscles too. IMO. They could see the spasms the doctor said.

I don't feel like it is a breathing problem for me, but the water can get down the windpipe when the spasms start and I don't stop trying to swallow. Does that make sense?
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