If THEY only knew then ... - (future on) June 4/5, 2020

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

If THEY only knew then ... - (future on) June 4/5, 2020

Postby mshusband » Fri Jun 04, 2010 9:10 pm

Wow, wasn't it silly 10 years ago ... looking back on it?

That was the day, a report came out showing that CRABS drugs are basically ineffective.

You remember that day right? Remember? That was still when persons were diagnosed with MS - a medical condition of unknown origin to which you were given a choice of a few drugs and not a lot of answers ... basically a whole lot of people for about 70 years were told ... "well, we really don't know" but these drugs work on mice with EAE. Yet, those same doctors couldn't wrap their heads around why they didn't work on humans ... or what bloodflow had to do with the disease they spent all these years studying until this "Zamboni outsider" came up with this theory ... (silly, I know).

Well a lot sure has changed since that day.

Now, in the medical world, we've come to realize a few things thanks to those pioneers and wonderful initial doctors who had open minds. Thank you Dr. Zamboni - by the way I hope you're still polishing your Nobel Prize at least once a week. Thank you Dr.s Dake, Simka, Sclafani, Siskin, Lyduga, Hubbard, Hacke, Zivadinov, Schelling, Vogl, Sinan and (I'm sure I'm forgetting some - but it has been 10 years). PS Dr. Zamboni, remember when they mocked you? (Colin Rose, Dr. Freedman, the community of neurologists ... who got the last laugh?)

Anyway, as I was saying folks in the year 2010 ... we've learned a few things ...

After all the IRB non-sense, study approvals, and Canada and the US FINALLY coming on board with treatments ... things changed rapidly.

Now WHEN a person is diagnosed with "MS" it's no longer a disease ... it's a condition resulting from poor blood-flow in 3 main veins. The INTERNAL JUGULARS (which drain veins in the head and neck) and the AZYGOUS VEIN (which drains the veins of the spine). As soon as that is detected, patients are sent to get their veins fixed. Sure, sometimes there's still restenosis ... but it's easily fixed like I said. Back in 2010, remember the cases of people who said they had MS but not CCSVI? Well ... that was only sort of true. Some of them didn't have MS, some of them had CCSVI - but doctors were still learning (hey, we're human too ... cut us a break ... we might act like we know it all ... but nobody really knows it ALL).

In 2020, there is no Primary Progressive, Secondary Progressive, Relapsing-Remitting ... that was nonsense anyway. All it ever was was different types of stenosis in different veins, over different periods of time. You see, we as doctors came to find out, it was just a matter of which veins were stenosed and which part of them needed to be 'fixed'. As long as you didn't have this for a long period of time, well ... your body will take care of the rest once your veins are cleared. Sure there is still the occasional odd case - like after an accident - when veins can't be fixed. We wish that wasn't true, but unfortunately, it still is ...

But in 2020 MS is no longer a "disease" ... it's just a result of CCSVI and TIME. We still haven't figured out the genetic defect, so there's no CURE for CCSVI, but it's easily treatable. Heck, we've even come to know in the past 10 years of study that BOTH stents and angioplasty are relatively safe ... remember all that misinformation in the beginning? It really just was a simple as having proper plumbing. You don't need 30 years of medical experience ... that's just good common sense. The amount in has to equal the amount out ... or there will be trouble somewhere. (PS thanks for the line Dr. Sclafani - you really were a key player in turning this tide, what with the first IRB approval and all).

Anyway, like I was saying ... this isn't hard. MS isn't a disease - it's just what happens when your central nervous system didn't get enough oxygen for a long period of time. We catch CCSVI early now ... and we fix it (we've gotten really good at fixing it too - finding those valves/flaps/leaflets and keeping them open). It was really just a matter of finding the right places in everyone to fix ... we've even developed better equipment to do so.

We've also learned that the body heals itself quite nicely. Sure in the beginning there were all those people with YEARS and DECADES of damage done by CCSVI (or I guess what you'd still call MS in 2010) ... but now since we catch it so early ... the body can quickly restore/rebuild/repair nerve pathways. It's not like it was 10 years ago. Like I said, there is NO PPMS, RRMS, SPMS ... after all ... all it was was CCSVI + TIME + different veins. It really was all as simple as lack of good nutritional blood to critical parts of the body ...

Remember that day when Dr. Freedman finally admitted he was wrong?
Remember that day you all went to your neurologist and asked "why didn't somebody figure this out sooner? This is all so simple."
Remember that day Colin Rose apologized for all of his nasty remarks about CCSVI ... oh that's right he never did, he just started blogging about something else when he realized he was wrong.

Anyway ... it really was all as easy as it sounds. MS ... we don't even really know what that is in 2020 anymore. The books have all been re-written, so thank you pioneers in 2009/2010 - you were determined not to be silenced. YOU stood up for the first thing that ever made real sense in regards to MS (even if it was a theory of before EAE existed - a century+ old - and one that several doctors through the years tried to convince people of).

The human body is a beautiful thing ... a complex thing ... but often times, it's a very simple thing. Get its cells nutrition (oxygen) ... and it will be healthy.

Until 2020, keep fighting the fight ... CCSVI is going to be proved. It's just a matter of time now ... Just read the stories of people benefitting today ... soon ... that will be everyone.

Heck, the MS Societies even came around relatively quickly - too bad it was too late (of course they no longer exist - though CCSVI Alliance is doing quite well).

PS - a hint from someone in 2020 - the US still hasn't won a World Cup - so you soccer fans ... don't go wasting your money betting on them.

................

OK ... I'm a very logical person. I'm an engineer. It's what I do. Things work for a reason. The body works for a reason. My guess is ... everything I just said above will be true 10 years from now. It's just a silly way of looking out 10 years and mocking what's going on right now - except what's going on right now is very serious. KEEP FIGHTING. CCSVI just makes too much sense.

Sure there will be those who mock this post (I'd bet Lyon/PatientX/Concerned if anyone wants to bet me) - but just remember that day when they have to admit they were wrong.

Catch CCSVI early, stop it completely, and the body will take care of the rest. No damage in the body is 'permanent' it's just a matter of time too.

I'm telling you folks ... there's a lot of debate and learning right now ... but what is the learning? Just learning how to FIND EVERYTHING and TREAT EVERYTHING.

There are no differences in types of MS (PPMS/RRMS/SPMS) except where the occlusions are in the veins. Mark my words ... 10 years from now you'll see. It really was all just a matter of flow.
Last edited by mshusband on Fri Jun 04, 2010 9:36 pm, edited 1 time in total.
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Advertisement

Postby Cece » Fri Jun 04, 2010 9:25 pm

Hey, I like it!!! And I don't think you need the line in there about Colin Rose (Colin who? Never heard of him....) 8)
"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
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby zinamaria » Fri Jun 04, 2010 9:37 pm

mshusband,

thank you
this is wonderful, and I like logical fun..Your positive attitude is refreshing and so welcome.
Personally, I have never 'identified' with MS, never stayed in contact with neurologists over the years since my diagnosis because I simply could not buy into the 'we don't know but try all these drugs anyway and thrash your body' thinking; I do not understand the phrase 'my' neurologist and never wanted to stay in the MRI mode of always having to know about how many lesions etc, keeping track like that always felt, for me anyway, like I would be identified with this thing that would eventually try to take over. I have refused it and at the same time respected what is happening in my body. It has been easier for me than 'buying' into the whole thing.
It has been over 12 yrs.

And although what is happening in my body is as real as it gets, I have always stated and stay very clear that I am a healthy person (taking care as much as possible with diet etc) with a few problems: one day I am numb, one day tired, okay one day my foot drags etc. But I see them as 'hold-ups' in the body and not that I am 'diseased'. I may have an illness, but I have never perceived myself as and ill person, ever.
All that said (tooting my own horn I know)..
I believe in the body knowing how to heal itself and sending it this message every day is so important.

Okay, that is my thanks and your post is a great way to start my Sat morning. (I almost went the engineering route many many moons ago and opted into the humanities, but my love of math and many years as a math teacher were good days).

Have a great weekend,
Zina
User avatar
zinamaria
Family Elder
 
Posts: 296
Joined: Fri Dec 04, 2009 4:00 pm

excellent piece!

Postby drbart » Fri Jun 04, 2010 9:38 pm

i would add as part of "the future of MS diagnosis" something about your GP *immediately* referring you to an IR to get your CCSVI fixed before you develop MS.
User avatar
drbart
Family Elder
 
Posts: 103
Joined: Tue Apr 06, 2010 3:00 pm

Postby mshusband » Sat Jun 05, 2010 9:22 am

You know ... I wanted to clarify a few points. I wrote that after midnight last night (my wife and I are excited because she got her date yesterday for the procedure to be done here in the states before the end of June).

Anyway, more along the lines of types of MS (RRMS/SPMS/PPMS) not being relevant in regards to CCSVI ... here goes.

RRMS - most likely caused by the jugular veins being occluded since that affects the brain. In RRMS - you can actually recover because there are more outlets from the brain than other areas. RRMS IS still progressive don't get me wrong ... it really just is a matter of how bad the stenosis is and the length of time ...

SPMS - well this is what happens when the jugulars AND/OR azygous are involved. Poor bloodflow spreads into the spinal column from the brain. Thus the reason it starts to affect the mobility ... because it is now not just impacting the brain.

PPMS - caused by both jugulars (in relation to blood being forced through the vertebral veins and causing problems in the cervical spine) AND azygous vein (causing problems in the thoracic spine). HOWEVER, IF CAUGHT EARLY, PPMS really should be the easiest to fix when you think about it. Dr. Zamboni found that 96% of azygous vein ballooning stayed patent in his 3 year follow-up. THUS if you get this corrected EARLY ... it should hold and be more helpful long term than the jugulars.

SO LET ME CLARIFY AGAIN

SPMS benefits (because the azygous holds to ballooning 96% of the time) because SPMSers while having MS for a while the SPMS is relatively new area and thus any deficiencies lost since becoming SPMS are recoverable.

PPMS benefits (in spite of the stories saying otherwise) in my opinion IF IT IS CAUGHT EARLY. Because the azygous holds 96% of the time ... this should be the easiest fix. It really is (as Dr. Sclafani said) just a matter of finding the correct leaflets/valves/flaps ... THAT is what the learning in this MUST BE. PPMS is NO DIFFERENT THAN ANY OTHER TYPE OF MS ... JUST THE AFFECTED AREA (VEIN).

RRMS will also easily benefit by liberation ... but the trick here is since it is the jugulars and we know restenosis is more likely than in the azygous ... this actually could be the hardest one. THEORETICALLY, since RRMS does relapse as the body puts pressure on other veins (the vertebral - which then leads to SPMS *see above*) IF the jugulars are ballooned and stay patent ... RRMS will also be able to recover significantly since the brain is only used slightly above 10% anyway ... almost all deficits lost to sclerosis should be able to be repaired if caught early.



BELIEVE ME PEOPLE ... THIS IS WHAT'S GOING TO BE FOUND OUT IN THE FUTURE. I KNOW IT MIGHT BE HARD TO BELIEVE NOW ... but it IS going to happen.

The problem right now we have is that a lot of people with a LOT of MS damage are expecting CCSVI to be a miracle "cure". It's not necessarily that. But IF caught early - NO MATTER THE TYPE OF MS - it should allow the body to stop the process, repair/rebuild/and relearn.

JUST THINK ABOUT IT FOR A WHILE ... it makes too much sense.

Heck you could even break down PPMS even further - if your left side is affected it's likely because the back flow is into the HEMI-AZYGOUS VEIN (doctor should know where to look). If it's your right side ... just the AZYGOUS VEIN.

SPMS ... same thing (plus left or right vertebral vein) caused by reflux in the jugulars.

RRMS ... jugulars.


IT REALLY IS this simple folks.

It might take 10 years ... but you're going to see it. I believe doctors already do (we were basically told as much by our doctor who is doing the procedure in a few weeks) ... now they just have to put it in journals, allow time for it to be accepted, and change the text books.

The key is as soon as someone presents with MS ... go get your veins fixed. It's going to be one of several issues in the veins, but as doctors learn ... these are VERY smart men ... they're going to become quite good at this ...

Again, just wait and see ... from a logical point-of-view, this makes too much sense.
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby sbr487 » Sat Jun 05, 2010 9:54 am

2020 -

MS is just a name for collection of symptoms (multiple symptoms)

Level of iron in the brain is an routine test for people presenting with headache, ON ...

The gene responsible for impaired vein development is isolated

Stent is no longer a concern

2025 -

Scientists find way to reverse gene defects

Liberation procedure is used only if gene therapy is not possible
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby Cece » Sat Jun 05, 2010 10:52 am

The future sounds great. :)

And really, the present is looking good too...more and more people are finding their way to treatment, several studies are proposed or in IRB stages or underway...there are more reports of people being treated locally.

I also agree with the distinction that spinal cord damage is much harder for the body to repair or reroute than brain damage.
"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
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby Vhoenecke » Sat Jun 05, 2010 11:00 am

Mshusband,

You are correct, they will be saying this in the future but I think it will be quite a bit farther in the future than you give them. In ten years there will be a few more rumblings but they are trying to slow this down as much as they can. A few months ago I said to my family that in 50 years they will look back and say "What were they thinking" The same is true when we look back at the way things were treated 50 years ago. All I know Zamboni will be in the history books and the naysayers will not be known. I would also like the name of that Austrian doctor that Zamboni got his theory from. He had developed this theory 30 years ago, his son published his papers on the Internet and that is what Zamboni used for his theory.

Val
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby blossom » Sun Jun 06, 2010 12:57 am

ms husband, well put. congrat. on your wife's upcoming event. when one door closed you opened another one.
User avatar
blossom
Family Elder
 
Posts: 1360
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby zinamaria » Sun Jun 06, 2010 4:37 am

mshusband a wholehearted, hear ye hear ye and yes!!!!!!!!!

this is why I am doing everything possible for my body NOW precisely because I see CCSVI as a giant leap, the biggest so far, into the corrective issues with MS, not as a cure, and that the body needs to be as healthy as possible to deal with the changes, recovering from atrophy, and even those most debilitated can be doing things in preparing the body for the new changes experienced with CCSVI.
no matter how we feel, I think it's so important to stay in a wellness mindset so that after Liberation the body's healing is speedier.
I am so happy for you and your wife, and she is a blessed and lucky woman.

Keep us posted!
Zina
User avatar
zinamaria
Family Elder
 
Posts: 296
Joined: Fri Dec 04, 2009 4:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users