DR. SIMKA reply about re-stenosis

mshusband · Post by **mshusband** » Fri Jun 04, 2010 4:22 am

Maybe they won't because I think CCSVI has to have TIME (and some pretty significant amount of it) to interfere with nerves to cause MS.

Perhaps those people will have reflux ... but it isn't continuous as it is in someone who goes on to develop MS.

My hypothesis is CCSVI turns to MS when the nerves are starved of oxygen and in contact with pools of bad blood (iron) for some amount of time.

Catch CCSVI early ... likely you'll be able to stop MS or revert it.

When (as for some people) time has become an issue ... CCSVI is less likely to help.

I find it very interesting though Fiddler has seen some significant improvements ... he's had MS for quite a while ... though he became SP in the 2000's ... so again maybe TIME is quite a while and his damage is reversable and pathways are relearnable ...

It's a big mystery in that regards.

BUT as for concerned and his posts ... gee ... HI COLIN ROSE

... "angioplasty is dangerous and ineffective" ... call Bill Clinton. Angioplasty is safer than you trying to cross a street, get in a car ...

I think that should end that argument. Now hopefully Colin (I mean concerned) goes away for a few days.

shye · Post by **shye** » Fri Jun 04, 2010 7:16 am

5. Many patients who suffered from transient worsening of symptoms, improved after inclined bed therapy. You can try it, even if not efficient, at least it is 100% safe

So Simka now, as well as Dr Sclafani, see the benefit of Inclined Bed Therapy--
I think it would be a smart move for everyone to at least give this a shot, preferably PRIOR to getting the procedure--easy to implement, and the benefits are incredible--color and feeling in hands and feet, sleep thru the night without having to get up a number of times to urinate, no more post nasal clog and drip in AM, clearer thinking, less pain, etc etc
IBT, (and diet changes, and chiropractic) are legal and easy to do--might make enough of a change that you will not be so desperate for the procedure NOW, and can wait until things smooth out there--and who knows, in the end, you might just not need the procedure

Cece · Post by **Cece** » Fri Jun 04, 2010 7:48 am

concerned wrote:There are obviously unknowns. The human body and health and nutrition and genetics and environment and all of these things form so complex a system that I don't think there will ever not be "unknowns".

Yes, but this is true for any disease, and we still make shortcuts when we say "Smoking causes lung cancer" not "smoking plus time causes lung cancer," or throwing in diet and exercise and stress and air quality and genetics, even though those are factors as well.

I'm back to the simple equation, "CCSVI causes MS," with it understood that anything that is better or worse for vein health (diet, vitamin D, viruses) will play its role in the CCSVI side of the equation.

ikulo wrote:Even with informed consent, hospitals and doctors are unwilling to put themselves in the position of being sued for performing an "experimental" procedure.

On a vulnerable population, no less.

BooBear · Post by **BooBear** » Fri Jun 04, 2010 7:54 am

Since when is angioplasty experimental?

Angioplasty of the internal jugulars is routine when a patient is receiving dialysis.

Money will drive this either way. Some will resist it, some will come to advocate it- in either case due to personal interests.

Ultimately, we as patients should have a CHOICE.

Dawna · Post by **Dawna** » Fri Jun 04, 2010 8:03 am

Frankly I find his post somewhat discouraging .. at least in my case. I`m one that finds new issues post-procedure, but still have at least eliminated my limp. I see stories of so many who have `brand new lives`post-procedure, and hoped that for myself, but it doesn`t seem to be that way for me, at least not now.

There have been no answers as to if we can fluctuate from good to bad, and back to good post-procedure while still having clear-flowing veins. So I wait, hoping that I have a future which includes a decrease of MS symptoms. But unless I`m reading his letter incorrectly, it might seem that this is not too probable?

Cece · Post by **Cece** » Fri Jun 04, 2010 8:07 am

BooBear wrote:Since when is angioplasty experimental?

When it changes blood flow dynamics in the brain?
When the safety profile of its use so close to the brain is unknown?

Used large-scale on a specific population, it does need testing...but we all have to find our way onto those lists!

Dawna wrote: So I wait, hoping that I have a future which includes a decrease of MS symptoms. But unless I`m reading his letter incorrectly, it might seem that this is not too probable?

Not at all...there is too much that is still unknown...have hope!!

mshusband · Post by **mshusband** » Fri Jun 04, 2010 8:10 am

Cece wrote:
concerned wrote:There are obviously unknowns. The human body and health and nutrition and genetics and environment and all of these things form so complex a system that I don't think there will ever not be "unknowns".
Yes, but this is true for any disease, and we still make shortcuts when we say "Smoking causes lung cancer" not "smoking plus time causes lung cancer," or throwing in diet and exercise and stress and air quality and genetics, even though those are factors as well.

I'm back to the simple equation, "CCSVI causes MS," with it understood that anything that is better or worse for vein health (diet, vitamin D, viruses) will play its role in the CCSVI side of the equation.

ikulo wrote:Even with informed consent, hospitals and doctors are unwilling to put themselves in the position of being sued for performing an "experimental" procedure.
On a vulnerable population, no less.

CECE:

I think you're 100% right.

Listen ... Dr. Zamboni decribed finding the worse your disease progression, the worse your stenosis. THAT TO ME means very bad CCSVI + time = bad disease progression.

In your case where your MS is mild (as you've said before) ... it's likely that you have moderate CCSVI (not too bad stenosis but stenosis nonetheless) ... but OVER TIME that will still = disease progression.

It also depends on where stenosis is ... but this all makes too much sense.

Catch the stenosis early ... let the body (nerves) not die, fix the stenosis and the body SHOULD BE okay.

Let the stenosis go for a long TIME ... the nerves die, and recovery is less likely.

BUT nerves are always dying as long as stenosis is present, so while Fiddler has had some great gains since CCSVI, you have to realize the gains he's had are probably in the last things he lost while stenosed. Now the body will have to start repairing pathways or finding new ones.

It all makes absolute sense when you just think about it reasonably. Not in an ANTI-CCSVI way ...

THIS is what the body does.

Heck, when I was in college my friend broke his neck. Was told he'd never walk again ... was walking 9 months later ... why? Because the body repaired itself.

concerned · Post by **concerned** » Fri Jun 04, 2010 8:12 am

A) http://www.wcpn.org/WCPN/news/4782 - this is just one thing, there are many, try a google search.

B) I also read message boards where people talk about being abducted by aliens. Does that prove that aliens exsist and abduct people? (another token of my extreme to quote Zappa)

I think MSer's should be able to access all available options, we just got to see if this is really an option. There's thousands of documented cases of Christian Science cures "working", healing waters, etc. and I don't think those should be available options (that the state pays for anyway.)

Also, radon gas from the soil causes a lot of lung cancers. And if smoking causes lung cancer, and you stopped smoking after you got cancer did you cure it?

LR1234 · Post by **LR1234** » Fri Jun 04, 2010 8:25 am

Dawna, sorry to hear you have new issues. Are you RRMS or SPMS/PPMS?

I am glad to hear your limp has gone. I wonder if the blood flow gets caught somewhere else like in the verterbral veins that then causes different symptoms after the procedure.

I have also not had that much benefit from the procedure.

I had enough positives though at the beginning to believe there is something in this. I think MS for sure is part a vascular disease if not totally vascular.

Cece · Post by **Cece** » Fri Jun 04, 2010 8:30 am

If the analogy is lung cancer (end result of smoking) to EDSS10 - death from MS (end result of CCSVI), then at whatever point you quit smoking / get CCSVI fixed, that's where your recovery starts.

Best time to quit smoking is before you ever start.

Dawna · Post by **Dawna** » Fri Jun 04, 2010 8:32 am

LR1234 .. RRMS .. just diagnosed last year but probably have had it for 15 - 20 years. I only started having debilitating symptoms post-diagnosis. Go figure.

Also, just tried a 4" inclined bed thingy last night. I didn't notice anything different about my sleep, but maybe that's because my son forgot to put the cat to bed in the basement and she kept coming upstairs and yowling

.. mixed with children waking up with nightmares <sigh>

concerned · Post by **concerned** » Fri Jun 04, 2010 8:39 am

I didn't make the smoking analogy originally, i was just responding to it. People do say that CCSVI causes MS and Liberation Treatment is the cure.
People need to get their terms straight because they're filling peoples heads with baseless information and maybe telling them to do something dangerous.

mshusband · Post by **mshusband** » Fri Jun 04, 2010 8:48 am

This is where Concerned and I agree. I've never said cure ... I've said PROBABLY CAUSES and then ALLOWS THE BODY TO REPAIR ITSELF.

I think people throwing around cure is too much. And I know that is Concerned's concern ... because his mom is all hyped up on this but I believe she's had MS for (how long Concerned?) 25+ years?

Is it likely that CCSVI liberation will CURE her and she'll get up and run about? PROBABLY NOT ... but maybe she'll start to slowly gain things she's lost recently and the body will work backwards through time potentially repairing more ...

HOWEVER, the CURE would be fixing the genetic defect that causes the CCSVI in the first place.

What was the paper showing the genetics caused CCSVI?

There you go ...

concerned · Post by **concerned** » Fri Jun 04, 2010 8:56 am

My mother does have more realistic expectations now, but it's still a common thing with her and with here that this is being hidden or blocked because how much money pharmaceutical companies stand to loose but I haven't seen anything that would suggest that people should stop taking their medications and just get "Liberated" (how i wish there was a less emotional word for that.)

BooBear · Post by **BooBear** » Fri Jun 04, 2010 10:16 am

Cece wrote:
BooBear wrote:Since when is angioplasty experimental?
When it changes blood flow dynamics in the brain?
When the safety profile of its use so close to the brain is unknown?

Used large-scale on a specific population, it does need testing...but we all have to find our way onto those lists!

Cece, angioplasty in the IJVs is actually not new. I found a slew of papers that reference angioplasty in these veins outside of CCSVI.

A) http://www.wcpn.org/WCPN/news/4782 - this is just one thing, there are many, try a google search.

B) I also read message boards where people talk about being abducted by aliens. Does that prove that aliens exsist and abduct people? (another token of my extreme to quote Zappa)

Concerned, valid and mature points. Let me respond in kind.

A.) There are plenty of papers that are actual PAPERS, not news articles. Try a google search for those.

B.) I don't believe in alien abduction, and reading message boards on that topic is not likely to change my opinion there. However, if I was abducted by aliens, I can tell you I would be a believer.
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