Relapses after the liberation treatment?

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

Postby Daisy3 » Fri May 28, 2010 4:09 pm

Billmeik wrote:to be honest I dont get why people see so much improvement. It almost weakens the arguement, since after liberation none of the damage is gone.
And yes I think the lesions could have some lasting 'momentum' .


The only case that sticks in my head here is an attack without restenosis. That is something Ive been waiting for and fearing and it seems to be here.


I wondered about this too. The myelin sheath is not restored once the clogged veins are unclogged/cleared etc..

How do people suddenly find that their balance is better when the reason their legs are in a bad way is because of myelin erosion?
It does make me wonder if it is a short term 'fix' for people who are not so badly affected with gait/balance/loss of sensations is arms and legs so its easier for them to benefit from this.
Dunno...
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Postby mose » Fri May 28, 2010 4:29 pm

Billmeik wrote:to be honest I dont get why people see so much improvement. It almost weakens the arguement, since after liberation none of the damage is gone.
And yes I think the lesions could have some lasting 'momentum' .


I don't think it weakens the arguement. I believe it opens the door for all to re-evaluate what we know about MS symptoms and their relationship to lesions.

We've already long known that lesion location, total lesion load, and disability aren't always in lock-step. To me its logical that some aspects of disability may have nothing to do with visible lesion load at all and might not require remylination in order to improve.
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Postby spiff1970 » Fri May 28, 2010 4:44 pm

I have been told by my neurologist that inflammation occurs more often than we think in MS. If we had the chance to observe an MS patient's CNS everyday through a MRI scan we'd notice that small lesions show up and disappear over a short period. It may be that inflammation does not even show up as lesions. This may explain why people felt immediate improvement with the procedure. It may simply be that MS is always active in some respect although the damage is minimal and unnoticeable.

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Postby wobbly » Fri May 28, 2010 5:30 pm

soon 2 find out / mri sched 4 june 7/ i have not had spinal mri in 3 yrs / my lesions r in the spine/ it has been 18 months since liberation/ i hope it is the answer/ STAY STRONG ALL :roll: :roll:
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Postby 1eye » Fri May 28, 2010 6:22 pm

Why is it I have the idea in my head that LDN enhances angiogenesis? If it does it has implications for brain drainage (collateral veins). But it does not make any sense that it could help cancer, because new blood supply only makes cancer grow.

Am I wrong in thinking this? Does anybody here have any evidence? Thanks.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Fri May 28, 2010 6:23 pm

spiff1970 wrote:I have been told by my neurologist that inflammation occurs more often than we think in MS. If we had the chance to observe an MS patient's CNS everyday through a MRI scan we'd notice that small lesions show up and disappear over a short period. It may be that inflammation does not even show up as lesions. This may explain why people felt immediate improvement with the procedure. It may simply be that MS is always active in some respect although the damage is minimal and unnoticeable.

Huh! That's a new theory, seems like a decent one.
"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 malden » Sat May 29, 2010 2:03 am

Whitey wrote:I think it was Dr. Sclafani who wrote:
"Consider the brain to be like a barrel with two openings....


Totaly wrong and inappropriate consideration.

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Postby AMcG » Sat May 29, 2010 4:56 am

Zamboni agrees with Sclafani. Total amount in has to equal total amount out. It is called the Monro-Kellie law. It is in

"Doppler Haemodynamics of Cerebral Venous Return - Menagatti and Zamboni 2008"
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Postby Cece » Sat May 29, 2010 8:32 am

AMcG wrote:Zamboni agrees with Sclafani. Total amount in has to equal total amount out. It is called the Monro-Kellie law. It is in

"Doppler Haemodynamics of Cerebral Venous Return - Menagatti and Zamboni 2008"

I think I'll be siding with the esteemed doctors on this one.
"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 Whitey » Sat May 29, 2010 8:50 am

Malden wrote:
Whitey wrote:I think it was Dr. Sclafani who wrote:
"Consider the brain to be like a barrel with two openings....


Totaly wrong and inappropriate consideration.

M.
Care to elaborate? Typically when one disagrees with a theory, they provide some sort of argument other than "wrong!".
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Postby malden » Sat May 29, 2010 1:20 pm

Whitey wrote:Care to elaborate? Typically when one disagrees with a theory, they provide some sort of argument other than "wrong!".


It's not "a theory", it's an inadequate plumbing comparison.

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Postby vivavie » Sun May 30, 2010 9:35 am

Looking to make trouble again Malden??? Don't overload this tread too, I am interested to learn about relapses...

One thing for sure Malden, MY stent is bigger than yours!

Last MRI: there is too many lesions - impossible to count them! But if you don't know me you would not be able to tell that I have MS. Pain, fatigue, cognitive lost, noise, blader etc... 90% are invisible.

I did not have a WOW liberation but after one month (youppi!) there are some definitive improvements.

We just had a heat wave here, the liberation did NOT improve on heat tolerance...
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Postby ssmme » Sun May 30, 2010 10:32 am

@vivavie - what are your improvements?

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Postby vivavie » Sun May 30, 2010 12:16 pm

Hello Marcia, I hope you are feeling better!
5 weeks today(!)- one stent
Improvements: no more hands and eyelids tremor
no more legs bucKle (stiffness) - I always walk straight (no more hip compensation)
no more headheache (could not drink 1/2 a beer before!)
lots of saliva (I have only one semi functionnal gland from previous cancer)
regular dayly bowels (used to be once 7 to 10 days)
Unchanged: pain - fatigue - bladder - Raynaud hands and feet - heat intolerance - cognitive problems
NEW: periods (days) of Jello brain?!?
occasionnal numbness left arm (started right after procedure)
Menstruation since Plavix day1 (does not help for fatigue)

My hope before liberation was for less fatigue! it did not happen... YET!
RR ms for 11 years with 3-5 relapses/y until I had Mito chemio 3 years ago (none after).

It takes time and energy for the body to repair the damages and my Azygos was not checked.
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Postby costumenastional » Mon May 31, 2010 12:16 am

Speaking only for myself, i see liberation treatment as something that HAS to be done IF someone has problems with his/her veins.
Like i ve said before, it s better to keep our feet on the ground and wait to see if something good happens post op in the long term. Watching people feel like they are reborn only hours after their angio may be fantastic but surely it doesnt go like this for everyone. And i can think of many reasons this happens.

In general terms i think it is a bit early to talk about relapses after liberation since most of us have only done it recently. Also, having a relapse in a couple of months after the veins had been opened wouldnt say much about the effectiveness of the treatment altogether. This is the main reason Zamboni suggests for patients to stay on their drugs for some time.

I did not have any immediate effects after the angioplasty whatsoever even though they ballooned me in 4 places in total.
I have seen some minor improvements a month post op. Sadly it s nothing that has made my life better. My eyelead may not drop as often any more and my wrists feel stronger but all other symptoms are present as they were. And believe me when i say that those symptoms are those that matter the most.
In my case, progression was rapid in the first year after dx in late 2008. I was a totally healthy person and now i am just a dude trying to make it through the day. A month pre op i was very bad. Fatique could come in the middle of the day and cripple me just like that. I am never perfect but we are talking crippling stuff here. It has not happened in such a degree after i came back from Sofia. Does this mean i am cured? I wouldnt say so.

Is it normal to feel like shit post op? I think so. At least in terms of how CCSVI is causing damage in our CNS. It is NOT directly connected with demyelination for starters (which means it is not connected with remyelination either) and of course the damage that has been made in aspects of axon death and tissue death resulted by lack of oxygen or iron deposition is mostly irreversible.

Thus, the only thing one should expect post op is putting the brakes to this terrible disease and hopefuly, a trend to improvement in the years to come. IF those veins remain open. My humble opinion is that we all should be liberated and give it some serious time. There is obviously a connection between CCSVI and MS but there is a great difference between them. CCSVI can be fixed while damage already accumulated by MS cannot. Not in 24 hours.
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