Hoping for a multiple sclerosis miracle

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

Hoping for a multiple sclerosis miracle

Postby scorpion » Sun Dec 19, 2010 7:42 am

This is why anecdotal information makes it hard to get an understanding of what is truly going on. How would you describe her experience? Positive because the color of her hands changed or negative because she did not experience the changes she was hoping for? Do we assume nothing changed until she got out of the shower and then suddenly she felt the effects of the liberation procedure? It is obvious that ANY change she experiences she quickly credits to the liberation procedure. It is also obvious that she is looking REALLY hard for any change in her condition, as I guess all of us would, that shows the liberation procedure has worked. Do we say she has mild improvements? No improvements? What would she report??


http://www.healthzone.ca/health/newsfea ... is-miracle
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Postby Cece » Sun Dec 19, 2010 9:59 am

What a great article, scorpion. It's very in-depth with details of the experience of getting treated, emotions and all.

It sounds like mild improvements to me. I know I track my health very closely; I also fluctuate; so if I were to say "slight improvements" that would mean slight improvements. This is all immediately after a big travel and procedure that, as an MSer, is a big strain on the system so even if a person wants to feel better, if nothing were changed they'd likely feel worse from the stress and strain of the travel and procedure. Just my opinion.

I'm interested in this quote:
After going over her ultrasound results — everything looks good, he says — Mandato cautions Turner against trying to chart her progress too closely, lest she become disappointed with the slow pace of results.

“It's like a kid trying to measure how tall they're getting every single day,” says Mandato, who also strongly discourages his patients from getting the procedure done again if their symptoms reappear, unless they can honestly say their initial results were dramatic. “You're not going to see the pencil mark change every single day.”

I think it's a great description of the gradual improvements, because the initial results are the result of improved blood flow but the gradual ones are the body and brain healing which includes neurological healing which is slow but can happen. However I am unsure about the advice of what to do if symptoms reappear: strong discouragement from getting the procedure again, really? I believe the right advice on what to do if symptoms reappear is to get a doppler ultrasound. That is not a commitment to do the full procedure! But it is a way of seeing what's going on.
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Postby scorpion » Sun Dec 19, 2010 10:21 am

Cece wrote:What a great article, scorpion. It's very in-depth with details of the experience of getting treated, emotions and all.

It sounds like mild improvements to me. I know I track my health very closely; I also fluctuate; so if I were to say "slight improvements" that would mean slight improvements. This is all immediately after a big travel and procedure that, as an MSer, is a big strain on the system so even if a person wants to feel better, if nothing were changed they'd likely feel worse from the stress and strain of the travel and procedure. Just my opinion.

I'm interested in this quote:
After going over her ultrasound results — everything looks good, he says — Mandato cautions Turner against trying to chart her progress too closely, lest she become disappointed with the slow pace of results.

“It's like a kid trying to measure how tall they're getting every single day,” says Mandato, who also strongly discourages his patients from getting the procedure done again if their symptoms reappear, unless they can honestly say their initial results were dramatic. “You're not going to see the pencil mark change every single day.”

I think it's a great description of the gradual improvements, because the initial results are the result of improved blood flow but the gradual ones are the body and brain healing which includes neurological healing which is slow but can happen. However I am unsure about the advice of what to do if symptoms reappear: strong discouragement from getting the procedure again, really? I believe the right advice on what to do if symptoms reappear is to get a doppler ultrasound. That is not a commitment to do the full procedure! But it is a way of seeing what's going on.


I agree Cece. The writer did a wonderful job of taking us on this ladies "journey". When I read this I do not know what I would categorize her as because on one hand she seems to feel a little better but on the other she is very desperate to feel any improvements. I think this article is a great argument for clinical trials so that we could look at each individual's claims of improvements as objectively as possible. Off topic but Cheer mentioned Zamboni would be releasing data about his original patients. Any clue when we can expect him to release this info.?
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Postby Cece » Sun Dec 19, 2010 10:31 am

You'll have to ask Cheer, she is full of insider info! :)
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Postby cheerleader » Sun Dec 19, 2010 10:47 am

Bless her heart, I hope she continues to see improvements due to better flow. I also hope she has after care at home.

If she had been part of the Haacke protocol thru the Hubbards, we would be able to see perfusion and O2 changes pre and post angio. If she had been part of a clinical trial, she would be followed by a neurologist, who would chart her EDSS and MFIS. But honestly, who I am to say that people have to sign up for trials? My husband is only being followed on MRI (where lesions are shrinking and atrophy is reversed) and he will be considered an anecdote until his doctor publishes -which may never happen in his case. His doctor didn't have IRB approval to consider or monitor his MS diagnosis- since he was treated for central venous stenosis as a stand alone condition.

This is real, but results will vary. Zamboni's new papers will be discussed in Italy next March, not sure about publication. Thanks for linking, scorpion. It's well-written (how refreshing!)
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Postby David1949 » Sun Dec 19, 2010 1:24 pm

A friend of mine fell off his bike and did serious damage to his wrist. That was several months ago and the wrist is still not back to normal, although it is slowly improving. His doctor said it will take more time.

Now for this lady it's been only a matter of days since the Liberation procedure was done to correct a problem which has plagued her for years. Yes a few people have experienced immediate results but no one should expect that. Give it a little time.
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Postby David1949 » Sun Dec 19, 2010 9:54 pm

Scorpion it seems like MSers have two options right now.
1) Go for Liberation and have some hope for getting one's life back.
2) Don't go for Liberation and have no hope. In that case you can plan on watching your life continue to deteriorate until MS finally puts you in the grave.

The drug companies are not going to come to your rescue with a new drug that will cure you. In fact they have no incentive to even look for one. It's Liberation of nothing.

Seems like a simple choice to me.
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Postby EJC » Mon Dec 20, 2010 3:29 am

The thing is, it's not like repairing a broken limb is it?

There are centuries of quantified results in the process of broken limb healing, how they heal and how long it takes to heal.

With MS, firstly medicine doesn't really know why it occurs to start with, so what we understand as MS may infact be tens or hundreds of tiny minor conditions that combine to create what we currently label MS.

CCSVI may be the answer for a certain percentage of those complaints, but as we don't understand what MS is, we can't know which CCSVI will help.

I don't see CCSVI as the answer, I see it as the beginning of the understanding that may lead to the answer.

It will be a out of the box thinking like this that expands the understanding of MS and may even lead to a better understanding of why it occurs to start with.

In the meantime Emma and I see no downside of having the liberation procedure which Emma has next Monday (27th Dec).

We will of course report her results on here in as much detail as possible. As Emma has had MS for 12 years (she's 38 ) we don't expect instant results, you're not going to reverse 12 years of atrophy in a minute are you?

What we are hoping for is an easing in cognitive fog and a big hope that eyesight will improve, either one of those will improve quality of life, which is ultimately what we're paying for, a quality of life improvement.
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Postby BooBear » Mon Dec 20, 2010 6:03 am

EJC, I agree with you. I believe that we are learning more and more each day (how wonderful!!) and that we will see some real activity in 2011 that will move us even closer to the answers we seek.

Best wishes!!!
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