why?????????????this does not make Sense!!!!!!!!

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why?????????????this does not make Sense!!!!!!!!

Postby blossom » Mon Oct 17, 2011 3:08 pm

why would a thread that got 107,779 views and nearly 1600 posts here be moved??

i am referring to "CCSVI-CCVBP" "UPRIGHTDOC""DR.FLANAGAN."

many of us here feel this is a part of all this ccsvi ms mystery.and to boot there are some because it was put on this site that actually benefited. the study that the chiro.'s just did with the upright mri-look at what they are finding and it was posted here.

dr. flanagan's knowledge of the spine, nervous system or "blood flow" is hard to match. and like it or not, this aspect of symptoms they call ms or other diseases he and others are finally bringing to the surface has for yrs. been GROSSLY IGNORED AND KEPT AT BAY.

i feel this is wrong to move this thread. and some will miss the info. and i totally disagree with anyone that believes this has nothing to do with ccsvi in some cases.

dr. flanagan is too much a gentleman to voice to anyone about his thread being moved.

but, right now i don't feel too much like a lady and i'm putting all this nicely!!

after all the time it was here and the many it has helped--AND THE POINT OF MOVING IT IS WHAT??? JUST BECAUSE YOU CAN???
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Re: why?????????????this does not make sence!!!!!!!!

Postby cheerleader » Mon Oct 17, 2011 3:23 pm

Blossom--
Sorry you're so upset.
I didn't request the moving of the thread, I only requested the moving of the glucosamine thread....but I kind of understand why the moderators decided to put it with all the other chiropractic information, and give this important topic its own location.

This Is MS has always had separate threads for different topics. That's what makes this site so great. We requested a separate CCSVI thread a couple years ago, and the moderators obliged. But I still participate on the regimens thread, the diet thread, copaxone thread and the general thread. There's some great information out there, beyond the CCSVI walls... jimmy's posts on nutrition and supplements are some of the best info out there for pwMS.

Dr. Zamboni's discovery of CCSVI did not include anything about the cervical spine. It deals with truncular venous malformations, the veins, and the 5 parameters of doppler ultrasound Dr. Zamboni created. Dr. Flanagan's input is wonderful, and I hope he can go to the next ISNVD conference and work with the doctors looking at CCSVI, because he has a lot to offer them in his understanding of upright hemodynamics.... But in all honesty, it's not about what Dr. Zamboni discovered. It's good to branch out from the CCSVI thread, in order to learn what else is out there. There's an abundance of great information on the other threads.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: why?????????????this does not make Sense!!!!!!!!

Postby jimmylegs » Mon Oct 17, 2011 5:01 pm

thx for the props cheer <3
i started consulting officially, locally, today - just got home from the consult :D
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Re: why?????????????this does not make Sense!!!!!!!!

Postby 1eye » Mon Oct 17, 2011 5:38 pm

@jimmylegs: cool.

@blossom:Please do not worry about the location of threads. URLs and browsers make it really really easy. Maybe a bookmark?
"Try - Just A Little Bit Harder" - Janis Joplin
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Re: why?????????????this does not make Sense!!!!!!!!

Postby HappyPoet » Mon Oct 17, 2011 7:25 pm

cheer, stand up and take a bow--what a performance! Will you sing your post for us and put it on Youtube?

jimmylegs, never mind.

1eye, I'm happy for you that your cognitive and physical abilities still allow you to use browsers and such, but telling a quadriplegic not to worry is not very helpful.

~~~~~~~~~~~

Oh where, oh where, where will "The Other 50%ers" go to find help, compassion, understanding, and answers after their CCSVI fails? I know! I know! To threads scattered all around TIMS, the helpful community!
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Re: why?????????????this does not make Sense!!!!!!!!

Postby blossom » Mon Oct 17, 2011 7:46 pm

cheerleader, yes, you are darn right i am upset. i did not know who had it moved and frankly i don't care.

but why??? i know you explained your reasoning or whoevers reasoning. but it just don't get it. for many reasons.

first off - dr. flanagan has been here quite a while now. and you are right he is very knowledgeable. maybe more knowledge than some like and it kinda steals the thunder a bit. although unlike some,who knock chiropractors, he does not knock ccsvi. it looks to me like he is here for the common good of people trying to get better.

nutrition is nutrition. supplements are supplements, stem cells are stem cells etc. and yes, it's nice they have their place. but it creeps in here a good bit and i have no complaints.

but by putting dr. flanagan's thread just under chiropractics when there is a direct connection with the spine to some cases of ccsvi and csf flow is plain wrong. it would be different if he was talking about chiropractics for a dislocated knee that is making it harder to walk if you've got what they call ms.

sadly, a lot of people that are newly diagnosed especially, may go on and get the ccsvi treatment that is a toss up that you may end up worse because of clotting etc. where they could at least look into or try a safer noninvasive way first. ccsvi is ccsvi--

were this info. available 20 yrs. ago for me and i had found a dr. flanagan i'd bet my life i would not be as bad as i am. and even at this ripe old age and hard knocks had i known about dr. flanagan i would have gone the flanagan way first before angioplasty which left me worse.

i hope all this would be thought over again and do the right thing. it's unfair to anyone seeking ccsvi treatment and not have his thread here. and yes people can browse and find him. but why should i or anyone else have to. he belongs right here.

so, again i ask why and the point was????????????????????????
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Re: why?????????????this does not make Sense!!!!!!!!

Postby Cece » Mon Oct 17, 2011 8:08 pm

His thread is popular, and I have to think it will remain popular in the chiropractic forum. It might end up being easier for people to find, for someone looking for upper cervical care but not ccsvi treatment. My concern would be if he decided to stop posting; I hope that this change does not disrupt what he is doing for those who are pursuing UCC or interested in pursuing it. I think moving the thread was a judgment call and the mods did right, because of the differences between CCSVI treatment and upper cervical care treatment.
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Re: why?????????????this does not make Sense!!!!!!!!

Postby blossom » Mon Oct 17, 2011 8:57 pm

you are right, that dr. zambonni did not include the cervical. but, he also did not include stents and they were used. he also did not go in the sinuses and it was done. dr. cummings even said there is a limt to how many times angioplasty can be done--then what?????

and whoever all of a sudden decides to take dr. flanagan's input about ccsvi off this site! because it doesn't fit the ccsvi page????????????????????????????????????????????????????????

i kinda feel like this is being done like like our newspapers and news. put the big headline out there but to find out all you can and get to all the truth of the matter you're gonna have to search everywhere to find what should have been on the front page with the headliner in the first place. but, maybe, people for whatever reason don't search and they miss all the total truth of the headliner.

what a shame!!! i keep hopeing dr.'s from all walks get together to solve this but hell it seems some aren't welcome on the same page let alone welcomed to work together. what a shame!!!

and i'm not gonna play suck up and ever agree with this. but who the hell am i right. for sure i'm me and i'm real. like it or not. like anybody really cares!!! but for sure i do care about those that come here new seeking info. about ccsvi and especially those seeking treatment and they miss out on this valuable ccsvi-ccvbp thread.
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Re: why?????????????this does not make Sense!!!!!!!!

Postby dania » Mon Oct 17, 2011 9:28 pm

I agree 100% with Blossom.
If you go to Dr Flanagan's web site there is a section titled "CCSVI and Brain Pressure"
And another one "Chiari, Trauma and CCSVI"
I think that is why it should be here UNDER CCSVI.
His chiropractic treatment is for CCSVI
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Re: why?????????????this does not make Sense!!!!!!!!

Postby MarkW » Tue Oct 18, 2011 2:03 am

I support the decision to keep the CCSVI forum about CCSVI syndrome. Please do not forget that MS is multifactorial and CCSVI syndrome could be one of the factors. Spinal injury may be a factor in some cases of MS and must be discussed on TiMS but there is no current evidence that spinal injury is a factor in CCSVI.
We should focus on Prof Zamboni's theory, which is best described in his recent paper rather than the earlier ones.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: why?????????????this does not make Sense!!!!!!!!

Postby munchkin » Tue Oct 18, 2011 5:08 am

jimmylegs - that's wonderful about the consulting.

I also support the decision to move the thread.

Because CCSVI worked for me before my veins occluded and scarred I don't think UCC would have made any difference. The issue was not pressure or narrowed passages. My problems were clotting from a tear and scarring from over-dilation. There is a lot of information on the CCSVI thread about the risks involved, but the thread is about the CCSVI procedure, not alternate therapies. Maybe the UCC thread should have it's own spot like CCSVI or any of the drug therapies. There are people who might be interested in UCC but don't know where to find that information because it has been in the CCSVI thread and they would not think to look there.

It's sad that these things have happened to some of us on top of MS, but we need to have the IR's/Vascular specialists start figuring out how to deal with the scarring, clotting, and restenosising. In a way that is safe and affordable. It doesn't matter what benefit UCC might have, it will not open my occluded vein and will not remove the scarring from my other vein. At this point in time those are my concerns and I want that to be something the Dr's start actively dealing with.

Those of us from Canada have been paying for this procedure from the get go and it's unfortunate that this is starting to happen in the states.
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Re: why?????????????this does not make Sense!!!!!!!!

Postby 1eye » Tue Oct 18, 2011 5:54 am

I'm sorry about sounding dismissive, because the topic obviously deserves more discussion. I'm terribly sorry about now knowing of blossom's quadriplegia, and I admit my cognitive problems do not make me empathetic.

The problem here is not that Dr. Flanagan's thread does not belong. Anybody can find it if they are looking for it. This has been a fast-paced ride for me at any rate, and I am just guessing when I say that the thing is related to the recent Big Change that happened to the site. It may not have seemed big but I think it was. See I don't even read the other forums (fora?). I suspect there are others like me who only became a member after seeing Dr. Zamboni on CTV. If you look close you see this forum was on it too. I had browsed it casually before so I knew where to look.

The Change has made me wonder if some people I used to see have put me on their 'enemy' lists, and are really gone, or am I just banned from seeing them, or them seeing my posts. I would not blame them, since I have been pretty flagrant sometimes. The issue with Dr. Flanagan is not that people can't find him. It is that they have become accustomed to seeing his stuff here, and that their posts to it may not be seen by the readers who all saw them before. Maybe it was set up another way originally, but this forum, and nowhere else, is where some people go, on the Internet. If they are like me, they often do not have much else to keep them occupied. Like me, they may be too dependent on it. I do not blame blossom for being upset or for wanting that topic back. I blame myself for not reading it very often, as I'm sure I have missed some good developments.

Maybe I will wander farther afield on this site in future, even though I know not as many others will be there. I don't want to miss developments around the CCSVI procedure, but maybe getting them elsewhere sometimes will make me more well-rounded.

I spend a lot of time typing on this damned computer, and I should probably be wondering what will become of all these words. It's not like they are on paper.

Maybe we should have a page with a chart showing how many people are "fully connected", how may people have one "enemy", one "friend", two, three, etcetera. Or maybe not. Maybe we should just do a roll call once it a while, to see if we have quorum. I don't know. Thank you, Poet, for putting me in my place. If I just shut up once in a while, instead of being insensitive, we'd all be happier, I'm sure.

The collective energy it takes to scroll past Dr. Flanagan, if you are not interested, would not light very many light-bulbs.
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Re: why?????????????this does not make Sense!!!!!!!!

Postby dania » Tue Oct 18, 2011 6:27 am

What if you had angioplasty for CCSVI and it did not work for you because your vein has a compression deformation. And what if that compression could be treated by a specific chiropractor. Until Dr Flanagan thread was posted here I had never heard that CCSVI could be caused by compression.
CCSVI is a condition. Not a treatment.
This is a forum to discuss Chronic Cerebrospinal Spinal Venous Insufficiency and its relationship to Multiple Sclerosis.
It should include any treatment that addresses CCSVI. Angioplasty, upper cervical chiropractic techniques, vein transplants, whatever works for CCSVI.
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Re: why?????????????this does not make Sense!!!!!!!!

Postby HappyPoet » Tue Oct 18, 2011 6:36 am

munchkin wrote:jimmylegs - that's wonderful about the consulting.

I also support the decision to move the thread.

Because CCSVI worked for me before my veins occluded and scarred I don't think UCC would have made any difference. The issue was not pressure or narrowed passages. My problems were clotting from a tear and scarring from over-dilation. There is a lot of information on the CCSVI thread about the risks involved, but the thread is about the CCSVI procedure, not alternate therapies. Maybe the UCC thread should have it's own spot like CCSVI or any of the drug therapies. There are people who might be interested in UCC but don't know where to find that information because it has been in the CCSVI thread and they would not think to look there.

It's sad that these things have happened to some of us on top of MS, but we need to have the IR's/Vascular specialists start figuring out how to deal with the scarring, clotting, and restenosising. In a way that is safe and affordable. It doesn't matter what benefit UCC might have, it will not open my occluded vein and will not remove the scarring from my other vein. At this point in time those are my concerns and I want that to be something the Dr's start actively dealing with.

Those of us from Canada have been paying for this procedure from the get go and it's unfortunate that this is starting to happen in the states.

So nice to read a thoughtful post. I don't agree with everything you said, and that's okay because you come across as genuine which is sooooooo refreshing.

I respect your opinions; here is just one of mine, for now:

Despite how anyone feels about where the UCC thread belongs, Dr. Flanagan was treated unprofessionally and rudely which was uncalled for and stands as an embarrassment to this community. There are some people here who need to read up on etiquette: http://www.emilypost.com/business-etiquette
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Re: why?????????????this does not make Sense!!!!!!!!

Postby dania » Tue Oct 18, 2011 7:04 am

There are many threads here that have nothing to do with CCSVI

how could the 8 year cycle be explained?
The MS society does not represent me.
pharmaceutical companies' influence in canada
Wheelchair Kamikaze post on developments in progressive MS
Vitamin D3 Before and After De-Stenosis. Inc sunlight/UVR
James Watson's discovery of DNA structure in 1953
Yawn stretch
Daflon 500mg tracking thread
influence of politics and the public on research funding

I am like 1eye, I only visit this forum I completely ignore the others.
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