Cece's turn

[drsclafani]

I always had a very strong "Startle Reflex." It drove me wacky. I would jump at the slightest thing, a loud noise, an out of the blue sound, or surprise in my vision view.

Is this what you mean Cece? Or too much going on? A store crowd? The kids at home making too much noise or fighting? The startle reflex is common in MS. Many people don't like crowds, more an anxiety thing, I think.

No, although I know what you mean. This is more me having difficulty shutting out too much going on at once, so that I can't think straight. Getting ready for dinner, one child doesn't want to do her homework, one child having a meltdown because dinner isn't pancakes, one child dragging over a chair to stand on because he wants to help me ... it is too much at once, it is stressful, I don't last long.

I noticed that I am not fatigued at all. After the first month or so my energy really picked up.

After a month, even! Two days ago, I had another "improvements" day, when new things appeared or got noticed. This time it was the sweating and a definite bump-up in energy.

I like "improvements" days.

I am having trouble with the time too. I feel it should be later because I get so much accomplished in very little time. It's a blessing. My days usually would disappear, and it was midnight in a flash.

Yes, exactly!! Such a blessing.

I think because I used to nap which I don't have to do now. The blood thinner, does give me a odd tired feeling. The shots made me cold, yet sweat, and I never did sweat, well not in years. I think it's the Lovenox shots that started it, thin blood, cold weather? I am still sweating but that could be the Warfarin, I don't know.

How long will you be on the blood thinners?
I've got one more week on mine.

It was like amazingly colorful on all the TV's. Now I close my eyes in a lit room for a moment, then open them, and the color is so much different, so colorful and strong, bright colors.

Interesting. I'm adjusting to some of the colors, but if I concentrate on them I recognize that it is different than it used to be. Was lovestruck by my son's blue eyes again today.

Another observation. I had some vivid dreams on LDN, but I haven't been able to get back on it, since Dec 1 off it, and a few tries in Jan. How LDN made me feel and improve was great, well the CCSVI procedure has made those same benefits 10 times or more, plus add some benefits. I wonder if there is a connection?

I've never tried LDN but have read here that it promotes angiogenesis, so the development of collateral veins. That wouldn't happen quickly, though, if a patient feels better quickly on LDN.

cece
reading your thread is better than reading your test scores on medical surveys. The effects you mention never get tested, probably dont get discussed with your doctors either.

i think doctors could learn a lot by such descriptive discussions of effects of procedures as well as of medications

[CD]

I've never tried LDN but have read here that it promotes angiogenesis, so the development of collateral veins. That wouldn't happen quickly, though, if a patient feels better quickly on LDN

I was on LDN for two years, 3 mg. I saw benefits like with the CCSVI procedure. It's more like looking back each week and noticing, "Oh, this is gone" or "Oh my goodness, I don't need my cane any more after 6 years of using it outside or in stores, a must."

If added collaterals helped, why am I closing them off? Hm Oh yes, I wanted to get rid of all my other residual damage/garbage I have accumulated after 30 yrs of MS.

MS hug, numbness and tingling, fatigue, cog-fog, to name a few, they have greatly improved. Bladder is not hesitating, or retaining anymore.

I still have terrible burning in my legs and feet, but not as often as it was, every few hours. I don't know yet if I can take the summer heat unless I travel to Florida or some tropical Islands.

I can see how I can get greedy, hoping to eliminate MS completely. I had three or four relapses a year in 2000-2004, then 2 a year. I had 5 to 10 days of IVSM to walk again, each time it knocked me on my butt.

With the LDN I didn't have one, in those two years. I went off it for the CCSVI procedure and I almost relapsed, I had steroid shots during the first procedure, shot into the IV hook-up, NPT said. I didn't like having the first procedure in the Hospital.

The second one was in his clinic. More control over what is going on. In the hospital, too many hands, one not sure what the other is doing, IMO. Plus resident doctors training.
CD

[Cece]

cece
reading your thread is better than reading your test scores on medical surveys. The effects you mention never get tested, probably dont get discussed with your doctors either.

i think doctors could learn a lot by such descriptive discussions of effects of procedures as well as of medications

Thanks, Dr. Sclafani.

Not many doctors would read a 23-page patient thread. It's pretty neat that you're here.

[MS_HOPE]

cece
reading your thread is better than reading your test scores on medical surveys. The effects you mention never get tested, probably dont get discussed with your doctors either.

i think doctors could learn a lot by such descriptive discussions of effects of procedures as well as of medications

Thanks, Dr. Sclafani.

Not many doctors would read a 23-page patient thread. It's pretty neat that you're here.

Agreed on both counts, Dr. S and Cece! I've bristled at how narrow the typical neurological exam is, and at how the doctors would seem to "tune out" when I'd mention improvements in various symptoms after changing my diet or adding a certain nutritional supplement. These were MS research doctors! I'd have thought they'd be a LITTLE curious or interested, but no. One of the many reasons I stopped going to neurologists over five years ago.

Perhaps we pwMS could come up with a new, better symptom scale for the docs to use....

For now, I think one of the best overall indicators of how CCSVI treatment is working for folks is www.ccsvi-tracking.com, though it's far from perfect, and needs more transparency. But keep in mind that it's pwMS doing this, as volunteers! What if one of the treatment centers made such a site for people from all over the world to report their CCSVI experiences? Much easier to look at such graphs than to pore through thousands of TIMS posts or Facebook pages, much as I truly appreciate the wonderful information there.

Sorry for the mini-rant, Cece. I am so heartened to hear of your continuing improvements, especially since I just learned that I'm to receive my CCSVI treatment next week! Much to do before then, but I'll be posting my impressions and experiences when I can.

Sending you positive thoughts for your continued healing, Cece, and gobs of gratitude for all the helpful information and discussions you've provided here on TIMS.

[1eye]

That's my thinking about LDN and collateral veins: I could be way off base. I thought maybe it helps them grow. I saw interesting effects on my hair and nails after only a few weeks. However vein health can benefit from more than just collateral growth when angiogenesis occurs. I figured that maybe remissions and effects of LDN might be for similar reasons, and that if a remission takes a while, that might be how long it takes for new passageways to appear, and that applies without LDN, which might speed things up, but as you say it is not immediate.

Immediate improvements: could they happen just from effects of oxygen? The other possibility, though I hate to mention it here (oh, how I hate it!) in "mixed" company, is psychological. The effects of too many falls and mishaps can shake your confidence, make you unsteady, make your normal much more careful and slow, even if you don't need to be, all the time, just "in case". There is nothing like a bunch of real, palpable, physical improvements, which do happen starting right away, to *build* your confidence up, and you may try to do things you thought you couldn't.

For ccsvi-tracking, I recently got a tickler email from them that told me my data was lacking since my August procedure. While I do think more data is better I don't think these folks have any call to pester people about it, especially since the collection facility is voluntary and has not been always so well-organized. I don't even think our friends the drug pushers collect data monthly!

About those collateral veins, they will only disappear if they are not being used, and even then, they don't evaporate. You just can't see them because the blood is carrying the x-ray dye somewhere else. If there is *any* need for them, they won't go anywhere.

What keeps veins alive? It must be whatever oxygen and sugar is left over in your blood. So CCSVI will make itself worse. The longer the blood takes to get through your brain, the less there will be left over to keep your veins healthy. Solution: think less! More sugar!

Those photos: I'm no doctor but it looks like that vein is either making almost a loop, or there is a big bubble that wasn't there before. Could the balloon cause a big aneurysm-looking thing like that? Naaah, just my over-active imagination. Certainly even if it's looped it has plenty of blood in it, and "corollary" to the self-destruct thing I said earlier, the presence of flow will make it more happy and healthy.

[Cece]

Agreed on both counts, Dr. S and Cece! I've bristled at how narrow the typical neurological exam is, and at how the doctors would seem to "tune out" when I'd mention improvements in various symptoms after changing my diet or adding a certain nutritional supplement. These were MS research doctors! I'd have thought they'd be a LITTLE curious or interested, but no. One of the many reasons I stopped going to neurologists over five years ago.

It seems that if neurologists were half as interested in this disease as we are, they'd be a lot further along at understanding this disease.

Perhaps we pwMS could come up with a new, better symptom scale for the docs to use....

I bet we could. The EDSS scale is especially inadequate in measuring disability in someone like myself. My severity of my blockages were validating in and of themselves!

Sorry for the mini-rant, Cece. I am so heartened to hear of your continuing improvements, especially since I just learned that I'm to receive my CCSVI treatment next week! Much to do before then, but I'll be posting my impressions and experiences when I can.

Next week!! I cannot wait to read all about it.

Sending you positive thoughts for your continued healing, Cece, and gobs of gratitude for all the helpful information and discussions you've provided here on TIMS.

I enjoy being a part of TIMS, what an opportunity we have to share this discovery with each other and to figure it out and to support each other. I want everyone to have the opportunity to choose for themselves whether or not to have treatment and how can they make that choice when most people have not even heard of CCSVI? On a personal level I can vouch that it seems to have worked for me. On an intellectual level I can vouch that the theory holds together and makes sense of this disease like no other theory has. On an emotional level, how can I begin to share how it feels to not be in the physical pain from the fatigue that I was in? It was endless and it has ended. I will be doing what I can to help knowledge of CCSVI reach people who can then choose for themselves whether this minimally invasive surgical procedure might help them against this monster of a disease.

[Cece]

Immediate improvements: could they happen just from effects of oxygen? The other possibility, though I hate to mention it here (oh, how I hate it!) in "mixed" company, is psychological. The effects of too many falls and mishaps can shake your confidence, make you unsteady, make your normal much more careful and slow, even if you don't need to be, all the time, just "in case". There is nothing like a bunch of real, palpable, physical improvements, which do happen starting right away, to *build* your confidence up, and you may try to do things you thought you couldn't.

It is OK to mention the "p" word, even here.
I mentioned somewhere that considering any emotional investment in CCSVI and how convinced I am of the merits of treatment, I would be a possible candidate for placebo effects. If I have them, they can add in to all the real effects I am experiencing.
You just can't get from where I was to where I am through placebo, imo. I am not 30% better, I am 300% better.

About those collateral veins, they will only disappear if they are not being used, and even then, they don't evaporate. You just can't see them because the blood is carrying the x-ray dye somewhere else. If there is *any* need for them, they won't go anywhere.

Yes, this is reassuring.

What keeps veins alive? It must be whatever oxygen and sugar is left over in your blood. So CCSVI will make itself worse. The longer the blood takes to get through your brain, the less there will be left over to keep your veins healthy. Solution: think less! More sugar!

I was never good at the thinking less, but I made up for it with the more sugar.

Those photos: I'm no doctor but it looks like that vein is either making almost a loop, or there is a big bubble that wasn't there before. Could the balloon cause a big aneurysm-looking thing like that? Naaah, just my over-active imagination. Certainly even if it's looped it has plenty of blood in it, and "corollary" to the self-destruct thing I said earlier, the presence of flow will make it more happy and healthy.

This is about the diagram I posted of shear stress in the veins vs the one with refluxing flow? Do you mean the growth where the vein wall damage was? That was the area of intimal hyperplasia, I think, where the wall was indeed growing thicker due to the effects of the refluxing flow. And, yes, if we're talking about the same thing (can't say for sure that we are), over-aggressive ballooning that is too oversized may spur intimal hyperplasia which looks like the bubble in the diagram I posted. And is not a good thing.

This is why our Dr. Sclafani has backed off on the bigger balloon sizes and is measuring carefully with IVUS, which results in more accurate measurements than can be done by eyeballing the xray procedure imaging, when picking a balloon size. High pressure balloons and kissing balloons, which work in the same way, seem to be where it's at...and if I don't have enough healthy skepticism, perhaps others will make up for that for me.

[Cece]

Now that I have tired myself with two long responses, here is what I came to report. I tried out exercise today. It is completely different. I have a jump rope, it is convenient and quick and can be done with the kids around. Normally I would jump rope for a minute or two to get my heart rate going, in an attempt to keep going through the day. When I would stop, it was because of my head-fatigue. It wasn't my muscles being tired, it was my body and my self.

Now, I just keep going! Eventually my muscles get tired, but my head never gets tired. It feels very healthy where before it felt like I was pushing myself to the limits of exhaustion.

I exercise reasonably regularly, I know my limits and they're sometimes frustratingly closed-in. When my head-MS is at its worst, I can still do 10 minutes of aerobic exercise before it feels like I might damage something neurologically if I keep going. At my best, in the morning, on a very good day, I can do 45 minutes. But judging from my abilities today, I bet I could do twice that.

[Nunzio]

Hi Cece,
I am glad you are doing so well. This will give me more confidence tomorrow when I will be treated by Dr. Sclafani.
My main problem is a 75% decrease in flow in my only functioning left IJV, the right one being hypoplastic. There might be some narrowing in my Azygous vein too. Hope I will be able to join you in reporting improvements.
Best wishes for continuing on your road to freedom from MS.

[Cece]

Hi Cece,
I am glad you are doing so well. This will give me more confidence tomorrow when I will be treated by Dr. Sclafani.
My main problem is a 75% decrease in flow in my only functioning left IJV, the right one being hypoplastic. There might be some narrowing in my Azygous vein too. Hope I will be able to join you in reporting improvements.
Best wishes for continuing on your road to freedom from MS.

Nunzio, you go tomorrow? I hope for all the improvements in the world for you.

The left IJV should be easy for Dr. Sclafani and his high pressure balloons. We've seen some of the improvements he's been able to make in hypoplastic veins, although we don't yet know the long-term prognosis, it is encouraging. The azygous gets checked in four angles, with breath-holding/expiration changes, and with IVUS. If there is anything amiss in the azygous, he's the best one to find it.

edited in: Thinking of you, Nunzio. I know you are busy today and we might not get an immediate post-procedure report, let us know when you can!

[blossom]

nunzio, wishing you the very best results with your liberation treatment.

[CD]

Nunzio, Good luck to you tomorrow. May all your dreams come true. I wish you tons of improvements from all three areas tested and treated.


@MS_ Hope, Good luck to you next week. I wish all the same good benefits for you too.

We can have an "UPDATE" party. Javabean must have more news soon too. It can be all kinds of updates, big ones, tiny ones or even a step backward. Compare notes.

All the best to everyone who is to be treated soon, who was treated, or wants to be treated and is waiting.
CD

[Opera]

Hi Nunzio,

I wish you a full recovery.

Kind regards

[Nunzio]

Hi Cece, Blossom and CD,
thanks for your wishes which came to fruition.
I cannot imagine a more knowledgeable and thorough doctor than Dr. Sclafani. In fact, sorry to tell you CD, he did not find problem in all three areas; he found problems in all 4 areas and treated them.
As expected I had narrowing in my left IJV due to narrow valve which he dilated. Next he dilated my right hypoplastic IJV even though he did not give me much hope there.
Then he looked at my azygous vein where he found 3 problem areas which were dilated. Finally he looked at the iliac vein where I had an unusual problem where the vein was split in 2 segments with
blood being pushed toward the azygous vein using the iliac-lumbar vein as a collateral, so he dilated both segments to improve the flow.
The procedure lasted over four hours, not the 30 minute common in other places.
I am already experiencing some improvement , I can walk better and I have more strength in my right hand.

[prairiegirl]

Great to hear of your improvements, Nunzio! Congrats, and best to you!