Before & after videos...

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

Postby PCakes » Fri May 07, 2010 11:26 pm

link to another before & after site.. http://mymsliberationprocedure.blogspot.com/
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Postby eve » Sat May 08, 2010 2:07 am

Hi Lora, it's not me who has been liberated but Denise, she updates on Facebook. I've changed my post so it's clearer that I use quotations.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby bluesky63 » Sat May 08, 2010 5:45 am

I read earlier in this thread that "professionals" look for signs of "faking it" in these videos. I assume that means doctors, and I can understand that, and I can appreciate that.

But in my humble opinion :-) the people who have MS themselves are the real professionals about their own symptoms, and I can watch those videos and see things -- obvious and subtle -- that I recognize, that the people in the videos don't always even mention, maybe they don't even have a conscious awareness of these things -- that I am excited about when I see the improvement. I don't see how they could fake these things, let alone fake multiple things all at once.

Let's put it this way: Maybe you could fake a disability (as though anyone would want to). But for an after video to be as convincing as these are, you would have had to spend years convincingly faking significant disability. Because I don't see how you could successfully fake this kind of wellness. :-)

So, so exciting. :-)
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Postby eve » Sat May 08, 2010 6:05 am

Update from Denise again:


5-7-10 Last night was like the nights before my Liberation. How scary that was! My legs starteded the twitches and tremor along with the body shaking and that horrible MS hug.

The rushes of heat liquid through my heart and chest were as bad as they were when I was having that spiral worsening of the disease. My balance became very wobbly and I was just miserable.

Going into the procedure this time was less troubling mentally. I knew all the nurses and doctors and the know me. So hugs all around when I walked in..although I did need my cane this day and I hadn't needed it in a week.

Anyway same as before except.................. The top part that appeard to have been collapsed had totaly shut down blood flow to the vien and the blood was going back up and trying to go around it's old route. (Thus that hot liguid sensations to the heart-NOT anxiety folks, that's your heart not getting the blood back to it. I will be researching that more in depth.)

The 'old' stents had to be removed as well as clots that were starting to form. Balloons were tried again, as the Dr. and I had discussed it before the surgery that since he was going in we should try balloons.

Well my veins are just being very difficult and balloons just wouldn't stay open and stents had to be used again. He moved it up to a higher area in the confluens of the left jugular and the other has been lowered in the clavical area of the jugular.

Well, then the center was collapsing so 2 more were placed center. Neuro-surgery was on stand by just in case, but wasn't needed. Let me tell you, I'm just a difficult case, this is all not usual. Remember how bad my vein was to start? Dried blood clots in a live human body.

This time after the procedure I needed a shot of morphine. The pain in my ear was horrible as well as in my neck. But, I didn't need my cane to walk out of the hospital again! The burning pinching pain that started down my arms and legs again was gone, the pressure that had built up in my jaw and left face is gone again.

The long trip home was rough for me, every bump in the road radiated through out my body as I dozed in and out of sleep. When I got home I popped you all a note, drank a couple of pain pills and went to bed.

5-8-10 Wow! I had dreams last night! Still in stiff pain today but getting better again. My balance is back! My boyfriend hired all the 'kids' (17-24 yr olds) to babysit and wait on me.

This time around was very difficult and I'm tired and weak today, but will need more quiet healing time. I suppose things happen for a reason and you all need to know not to take this lightly.

Not meaning to back off, but to make sure you are going with a very skilled doctor and facility that can back your doctor up. Just more reason why we need to get everyone taken care of as close to home as possible. Not everyone will fly through this with ease.

I'm thinking that those of us with more extensive damage and disease in the first place are going to have a more difficult time. Probably because we have been left untreated so long and just more of an indication as to why we must pust ahead. Time is not just brain, it's vein!


O btw if Denise were to fake it (right......) she should be up for an Oscarnomination. All these emotions that just sway by so easily!
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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post-procedure support

Postby Ruthless67 » Sat May 08, 2010 8:00 am

Eve,

Thanks for clearing it up the "who's" who for me. :oops:

And thank you for bringing Denise's story over to TIMS for all of us to read and follow. I think it's good to read about everyone's journey through the liberation procedure. This is how we all learn. Some of these stories are almost too good to be true and some are sad when no improvements are marked right away.

And all the personal experiences after the procedure, the good, the exhilarating, the scary, and yes, even the bad are of great importance to all of us. It will help us when our time comes to remember what we've read is "normal" after the procedure and what is not. And which symptoms are, head straight back to the hospital type of symptoms, and which are telling us to slow down and rest
.
There have been quit a few MS'ers going abroad for procedures, so these post-procedure posts are probably helpful to them as well. Even some done here in the US are done far from a person's home and can make you feel all alone and without support after you return home.

I know personally, just having MS is, in a lot of ways, a very confusing and scary disease. Often we're confronted with a new medication that we are given and have to work our personal way through it's side effects and decide whats normal and whats not.

When I started shooting Avonex into my body, I got the shakes so bad. They were similar to when I came out of anesthesia from an operation. But Biogen did have a telephone number you called that had support folks on the other end, who walked me through.

With CCSVI, we don't have a telephone number, but we do have other MS'ers here at TIMS as our support group. And thanks to Dr. Sclafani, we even have some medical presence. All of this helps so very much.

Lora
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Postby PCakes » Sat May 08, 2010 8:53 am

Hi Blue Sky,

If you read the post carefully..'faking' it was my word choice.. and i think i included that it was not a good one. Were i a wordsmith...

I was trying to explain that there are things that a professional can look for that could not be explained away by the placebo effect..

We have to hold up some faith in human kind.. there are many out there wanting to help.

Sorry for the bad word choice.. hope this helps...
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Postby thornyrose76 » Sat May 08, 2010 1:29 pm

bluesky63 wrote:I read earlier in this thread that "professionals" look for signs of "faking it" in these videos. I assume that means doctors, and I can understand that, and I can appreciate that.

But in my humble opinion :-) the people who have MS themselves are the real professionals about their own symptoms, and I can watch those videos and see things -- obvious and subtle -- that I recognize, that the people in the videos don't always even mention, maybe they don't even have a conscious awareness of these things -- that I am excited about when I see the improvement. I don't see how they could fake these things, let alone fake multiple things all at once.

Let's put it this way: Maybe you could fake a disability (as though anyone would want to). But for an after video to be as convincing as these are, you would have had to spend years convincingly faking significant disability. Because I don't see how you could successfully fake this kind of wellness. :-)

So, so exciting. :-)


I share your thoughts 100%!!
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Postby thornyrose76 » Sat May 08, 2010 1:42 pm

i believe that they really need to create a stent for the vein that is strictly suitable for a VEIN...why hasn't Dake or someone created such a tool(?), course perhaps they are working on it, or maybe they don't believe it is necessary...it's just that it seems so easy for a vein to restenosis. Are there many patients with stents I wonder, anyone know?
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Postby Cece » Sat May 08, 2010 1:48 pm

Simka's patients in Poland seem to get stents more often than not.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby bluesky63 » Sat May 08, 2010 2:04 pm

Eve, I hope I wasn't unclear, and I hope you didn't think I was being negative -- beyond anything you have written, I know that a vast number of people must be looking keenly at these videos. I bet many of them are doctors, and I have read elsewhere that some people already have prejudged that they are seeing things that are somehow "fake."

So I am thrilled to see these videos, and I recognize the details that I know intimately. As I said, you could mmmmaaaaaaayyybbeee if you wanted to take a few years and spend them convincing people you were disabled, but I don't see how you could suddenly fix those things.

:-)
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Postby bluesky63 » Sat May 08, 2010 2:07 pm

By the way . . . I would love to see before and after videos on intention tremors, finger to nose, nystagmus, INOP, babinski, shin-toe test, and other reproducible stuff.
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Postby PCakes » Sun May 09, 2010 5:56 pm

bump.. please add any videos available... even better.. add them to your post in the 'ccsvi tracking' sticky...
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ccsvi

Postby caraboo » Wed May 19, 2010 6:34 am

Hi all,

Does anyone no how Denise is doing? she is such a lovely person, i hope all is well.


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Postby PCakes » Wed May 19, 2010 7:59 am

Hi everyone,

If there are any new videos.. please stick 'em in here. They are helping. Feedback so far... 'I see improvements that are highly unlikely placebo' and 'a lay person would not expect such changes' and 'contagious happiness' and 'unethical to withhold' and most important.. ' I plan to share this information' ! !
These from my sibling.. "Chief Physio' local major hospital who also reports to there still being 'very little' professional talk of ccsvi but finally, there is some'.

Send one letter, to one politician every day!!
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Postby LR1234 » Wed May 19, 2010 8:37 am

I created a blog thread which would be a good place to post the videos.
I will bump it. Maybe someone could create a blog sticky for videos and for written blogs?
Last edited by LR1234 on Wed May 19, 2010 8:49 am, edited 1 time in total.
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