CCSVI treatment available in the U.S.!

newlywed4ever · Post by **newlywed4ever** » Thu Aug 26, 2010 6:34 pm

AlmostClever - I am sooo happy for you and sincerly look forward to hearing more of your journey to better health!

About those numbers...if I remember correctly, the angioplasty/CCSVI is only done on 1 or 2 days a week.

Cece · Post by **Cece** » Thu Aug 26, 2010 7:09 pm

Donnchadh wrote:I wonder, what is the best angle of inclination for the bed? I am guessing that the closest to being erect would be the most effective....how much did you raise your bed?

I went by Andrew Fletcher's recommendation of six inches. It's a fairly gentle angle. I agree with your reasoning, along with the idea that gravity is assisting the blood flow when it's at an angle and that hospitals have put people recovering from strokes at an angle like this. What we are dealing with is similar to a stroke.

For me the main thing is that I tried it and I could feel a difference. Some people have tried it and didn't. Could I have experienced a dose of Inclined Bed Placebo? If I have, it's fantastic.

(Apologies for the off topic...here is the IBT thread: http://www.thisisms.com/ftopict-8535-in ... ed+therapy )

Drury · Post by **Drury** » Thu Aug 26, 2010 7:18 pm

How kind you all are. Brings tears to my eyes.

Cece,

Yes I was thinking of what Dr. Sclafani had said about MRV testing. The doctor said they will have the doppler later this year and said my daughter can have further testing when its available along with the catheter venogram to cover all corners.

He did say that she may well have reflux but not sure what they could do about that at this point.

Do not know about May Thurner either.

Thanks Cece and yes we still have options.

pkittle,

Yes I think its important that she have further testing too.

1eye,

I am so happy that you have been treated. Poor you with the Valium - I know I would be exactly the same. Wishing you all the best and hope you see lots of improvements.

longman111,

I wish I could respond with a positive answer to your fears. Sadly there really is no way to know how a person will test until they do it. I have no idea if the test is inadequate but do remember that my daughter did not have all the tests as we live in NY. If she had flown in I am sure we would have insisted on the 'gold standard' as well to make a definite diagnosis one way or the other.

Could you wife get an MRV locally by any chance?

HappyPoet,

What lovely words.

Yes it was difficult although I put on a brave face for her. My daughter is 31 and a delight in every way and I had truly prayed that this might be an answer for her.

I absolutely agree about the 2nd opinion and doppler. I find it hard to believe that she does not have stenosis and as Cece said it could have been missed somehow. Dr. Madato said he would contact us as soon as they have things up and running but that it could take about two months so we will ponder on that one for a bit - I know how much you like Dr. Mehta and I will certainly bear that in mind.

I will keep you posted for sure.

hannakat,

How right you are. Such wonderful words of encouragement.

Once again thank you all for your caring and support.

Colleen (Drury)

fogdweller · Post by **fogdweller** » Fri Aug 27, 2010 9:06 am

Donnchadh wrote:
Cece wrote:
HappyPoet wrote:Quick update -- sleeping is continuing to improve... enjoyed first dream in at least ten years last night.
Isn't that something - I experience something similar (improved sleep & dreaming) when I inclined my bed.

Inclined bed therapy is starting to make sense to me....when you are supine your IJV's are supposed to be open and draining blood. In my case, and I am sure it's also true in many other "MS" cases, the IJV's are always in stenosis and never open (whether supine or erect). Inclined bed therapy mimics the posture dynamics of being erect where the return blood flow is via the external jugular veins and vertebrate veins-normally the IJV collapses when you are standing up.

That's why the body develops collateral veins in the attempt to create a secondary, substitute blood drainage system for the compromised IJV's. The main problem is that these replacement veins are so irregular and inefficient in drainage that blood reflux and back pressure differentials are created.

adh

facinating. I wonder if that has anything to do with the fact that when I wake up at night, and when I first wake up in the a.m., I am very very disabled, can hardly walk, my word finding is far worse than any other time during the day, etc., but after I have been awake and moving around for half an hour or so I am back to the way I usually am during the day. I woinder if all night I have been starving my brain because of the location of the stenosis. I just thought that far worse symptoms first thing in the a.m. was the norm, and never asked. Does everyone else have this???

Drury · Post by **Drury** » Fri Aug 27, 2010 9:27 am

One thing I did not mention regarding my daughters negative testing for CCSVI is that she had her neck readjusted by her Atlas Orthogonist (realigns the neck) about two weeks prior and he said "They will not find anything because I have just treated you"

I mention this because it is something that has been discussed over the months and my daughter has been going on and off for a couple of years since her accident due to severe neck/back pain which it certainly helps her with. He said it adjusts the blood flow as well.

Whether or not this had any bearing on the results we cannot say but she did mention it to Dr. Mandato who found it quite interesting.

Cece,

The inclined bed therapy is really interesting and we have talked about that too. One thing I wonder about is how does it affect ones sleeping partner? Do they feel strange being elevated and does it bother their sleeping experience in any way?

Will you keep us posted?

Drury

Blaze · Post by **Blaze** » Fri Aug 27, 2010 11:33 am

Fodgweller: I'm at my best physically, mentailly and emotionally in the morning, but as I become more fatigued througout the day and evening I become more disabled. Like you, I thought everyone with MS was like this, but your experiences and others shows this is not true.

I have not tried IRT yet, but hope to do so soon.

Cece · Post by **Cece** » Fri Aug 27, 2010 12:05 pm

Drury wrote:Cece,

The inclined bed therapy is really interesting and we have talked about that too. One thing I wonder about is how does it affect ones sleeping partner? Do they feel strange being elevated and does it bother their sleeping experience in any way?

My husband has sleep apnea, he'd sleep through anything. I think having the bed inclined improves his breathing so if anything it's slightly good for him and nothing negative. None of my kids when they come fall asleep next to me have fallen off or complained or anything.

fogdweller · Post by **fogdweller** » Fri Aug 27, 2010 1:15 pm

Blaze wrote:Fodgweller: I'm at my best physically, mentailly and emotionally in the morning, but as I become more fatigued througout the day and evening I become more disabled. Like you, I thought everyone with MS was like this, but your experiences and others shows this is not true.

I have not tried IRT yet, but hope to do so soon.

Blaze, that's amazing! I was so excited when I heard for the first time that night and day experience was different!!! Suddenly that makes so much sense. If some of the veins shut down in favor of others during times when you are inclined, and a long period of being inclined results in a different physical condition, they almost certainly are connected. I'll bet when we get tested, our stenosis are in a location that is entirely consistent with the symptoms, yours in the azygous (good bnlood flow during the night, lousy during the day) and mine in the jugulars (good during the day, lousy during the night). (I may have that backwards as to where the blockage will be, I don't have time to go back and check that out right now.) Let's keep in contact and see if that turns out to be the case.

Cece · Post by **Cece** » Fri Aug 27, 2010 1:22 pm

There have also been reports of up to 100% stenosis in the verts, which are needed during the daytime. DrS has talked about that he might balloon a vert, too, so these could end up being treatable too.

Blaze · Post by **Blaze** » Fri Aug 27, 2010 1:38 pm

I thought I was pretty up to date, but that's a new one for me. What's a vert, CeCe?

buttercup2 · Post by **buttercup2** » Fri Aug 27, 2010 1:41 pm

called albany may 12 and am scheduled sept. 14 at 8 a.m.

Cece · Post by **Cece** » Fri Aug 27, 2010 3:35 pm

buttercup2, congrats on getting a date (so soon! are you ready?), & great first post.

Blaze, by verts I mean the vertebral veins. (Jugular veins take the blood flow when lying down, but in a normal healthy person the jugs close when you stand and the verts take the blood flow.) They are smaller but Dr. Zamboni has treated them in Italy through ballooning with inconclusive results. One of Dr. Sclafani's patients had 100% closed verts, IIRC. He did not treat it but in a more recent musing said he might do so soon.

fogdweller · Post by **fogdweller** » Fri Aug 27, 2010 6:03 pm

Thanks, Cece, I did get that backwards. The jugs are when you are lying down, the others when you are verticle.

So if my stenosis turns out to be in the jugsulars only, then that expalins why I get really bad at night, but by day not so bad.

I think I will start a thread tomorrow and see if those that hae been treated can show a corellation.

newlywed4ever · Post by **newlywed4ever** » Fri Aug 27, 2010 6:37 pm

Would definitely like to see a thread on this!

BadCopy · Post by **BadCopy** » Fri Aug 27, 2010 8:16 pm

fogdweller wrote:Thanks, Cece, I did get that backwards. The jugs are when you are lying down, the others when you are verticle.

So if my stenosis turns out to be in the jugsulars only, then that expalins why I get really bad at night, but by day not so bad.

I think I will start a thread tomorrow and see if those that hae been treated can show a corellation.

I was just treated in NY on 8/10. I was always worse when I just woke up. After about a 1/2 hour I would start to come around. They found probs in both Jugs and Azygus, Verts were fine.