Is Liberation treatment really a cure? doesnt sound like one

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

Postby CureIous » Wed Apr 21, 2010 3:19 pm

Well thank God I'm my own expert on whether the results were "valid" or not.....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby silverbirch » Wed Apr 21, 2010 3:26 pm

Sou

I had a real good belly laugh at your blog - how funny

silver xx
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Postby Salvatore24 » Wed Apr 21, 2010 4:11 pm

I had a more detailed post written up, but my PS3 won't let me post on the forum for some reason. I can't remember all of what I typed, but here's the gist of it:

As much as we all want CCSVI to be the answer, we have to wait for studies/clinical trials to be completed and results published to determine the significance of CCSVI. Note, I did not say that the ballooning procedure should not be performed at all (so don't boo me). I'm just saying that without further study, we do not know what part CCSVI plays in MS.

Now, it could turn out that it is indeed the cause of MS, it could be a significant part of the disease process, it could be a condition that only a handful of the MS population have, or it could have no relevance to MS. Only time will tell, and it is pointless in the meantime for anyone (yes, I'm talking to everyone on this forum) to argue or tout this as a cure, the same goes for the naysayers. There is not enough data for anyone to come to a conclusion, much less people that don't have medical expertise.

Personally I think there is a link, you can't deny the improvments that people have had, or even Rici, who now speaks of his "Turbo MS" after his valve was destroyed, and the reflux being 10 times worse.
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Postby costumenastional » Thu Apr 22, 2010 2:03 am

Loobie wrote:This is the first thread where this is being bantered about logically. From an SP, first hand account it is 100% apparent that even if my MS is 100% no longer active, that I will always have a certain basket full of physical deficits.

Think of a spinal cord injury. Let's use Superman since he's a case everyone's familiar with. It's not like he fell of a horse every day. The injury causing event (in our case MS) is not active, but the damage is there. That is why he was so adamant concerning stem cell research. Until I can grow some new nerves (fingers crossed), I'll not be able to empty my bladder even though I may not be getting worse.

I think the hysteria (I cringe to call it that since I was right there, let's call it enthusiastic hope!) arose when the first few FULLY IN THE CAMP OF INFLAMMATORY RRMS had their procedure, the inflammation calmed down. And since the outward expression of their symptoms was CAUSED by said inflammation, then those symptoms abated. I did, indeed, have things that got better. To me those were the parts of my disease that still had an inflammatory element. Those symptoms that haven't gotten better were obviously caused by damage that will need a 'repair man' to fix. CCSVI does nothing ACTIVE. It is an event.

Now we all should note that my general sense of stability and solidness are night and day to when I felt my disease was actively working on me. Just the lack of confusion and head swooning and needing to constantly shut my eyes. Well that has given me so much life back becuase I can stay engaged in what I'm doing. That's so huge I can't even describe it. I couldn't stay engaged with a problem long enough to solve it, a conversation long enough to finish it, and so on.

So I fully think CCSVI is something we should all have looked at and if there fixed. It's been miraculous in terms of QOL improvement, but I don't feel 'cured' at all. Bob's pointing out that there are many different perceptions of what cure means is very valid. To many, cure means you 'go back to normal'. If that's your definition, you'll be left wanting if you want to say this is a cure. If you want to say "I haven't felt this good in forever and I actually look forward to tomorrow and actually think about the future", then you better find someplace to get this done. I say that only because that's what it's done for me. I'm happy as a pig in shit to have had this done because, to me, it's the best choice we have in terms of impact on QOL, and isn't that what a cure would be about also? So yes, this is a conundrum defining what IS considered a cure.


THIS IS EXACTLY WHY I AM HAPPY NOT EVERYONE BEHAVES LIKE ME!

Thank you VERY much. I dont think i have ever read something better in here. Respect.
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Scar tissue can be repaired and replaced with new.

Postby AndrewKFletcher » Thu Apr 22, 2010 2:32 am

Asher wrote:Scars my friends, this what MS leave in the brain/spine. And scars don't 'cure'. Having said this, if progression can be halted, it is as close as we will ever come to be 'cured'. And that is GREAT, SENSSATIONAL NEWS.


Sorry Asher This is not correct:

Old scar tissue has been reported by many to fade away using IBT over many months / years. Terri Harrison has been virtually symptom free for 12 years now.

Scar tissue in a spinal cord injury is a major stumbling block for recovery. Yet we have observed significant recovery from people with spinal cord injury, many years after the date the injury was sustained. The only way for signals to reach the brain from below the site is either a repair of the damaged scar tissue or nerve growth bypassing the old scar tissue.

The damaged optic nerve in P W ms has been fully restored and sight has returned, again indicating that repairs are entirely possible.

There was also a paper I read a while back stating the brain has the capacity to repair itself constantly.
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Is liberation really a cure?

Postby miranda » Thu Apr 22, 2010 6:30 am

Cure or not Cure that is the Question ?
AT LEAST LET NO ONE STOP US FROM FINDING OUT
But in order to get the answer asap is by continuing to communicate the data

regarding CCSVI in our own countries. The Canadians are a shiny

example trying to include ccsvi in their health system. In the meantime

Let us enjoy the terrific news from all the CCSVI PATIENTS THAT WERE

LIBERATED OPTIMISM IS THE KEY WORD HERE :D :D :D

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cure

Postby THEGREEKFROMTHED » Thu Apr 22, 2010 7:17 am

Tell me people what is a cure? what is the definition? what does it mean to you? is it complete remission? is it effective treatment in avoiding relapse? is it regaining some function? its different to everyone.

to me a cure means today i have MS and tomorrow its gone and im functioning 100%. thats a cure.

Ok heres the deal. I was liberated. I went in March 3. I worked may ass off for 6 months to get tested and treated. Lots of highs and lows. Drove my wife insane.(cant believe she is still with me!)thank God for her.

Dual bilateral stenosis. Thats what they told me. Best IR in the country in my opinion. Man i was worked up. On the table my heartbeat pulse was like 123 bpm. The thought of how when its all over ill be walking quickly, running around the yard, all the shit that i have mourned, the thought was so overwhelming.

That night i got back to the Hotel. Couldnt wait until the next morning. I had some new heat in my feet i never felt. Awesome. BAck home a few days later. Man i was beat up. Mentally more than physically. Week later i battled the warfarin drug. (war it is and fairin it aint) Dizzy, tired, beat up i kept anticipating "the cure" we are all looking for. Somehow managed to get a UTI that kicked my ass more. Oh well figured it will pass. Never had one in my life.

Look hate me if you will. I just want people to know I have MS and it sucks. I want to be "cured" too. I have 4 kids, a business, an amazing wife, a great family. I could afford the treatment but Cured i am not. Just be careful. I know we want relief. Im having an attack of vertigo so bad i did 3 days of shitumedrol. Im not happy about it, but its reality.
People are mortgaging homes, jacking up credit cards, and believe me i understand, but i think its only right that somebody at very least warns that just maybe something may not happen if you get liberated. I just paid american express 5 grand for hotel and meals and flights, and i havent even got my liberation bill yet. But that is what i chose to do. If you choose to do the same. Great. Be the best you can and go for it. But dont get yourself mentally where i did. And dont go there if its going to set you back further financially or mentally or symptomatically. I have put myself into a relapse because i got so worked up. Maybe i restenosed, maybe my veins just suck, who the hell knows? The thing is i care about people. That is the bottom line. Thats why i went in for the procedure. I care about you and your wife and your husband and your friends and i want you to feel better. Ive been good to people my whole life. That i feel we all share in this forum. But PLEASE be careful. Dont make things worse for yourself.

Will i do it again. Hell ya i will. Ill do it until the cows come out. I look forward to the day when procedures are written specifically for CCSVI and protocols and equipment and the works. PLEASE i know how hard everyone is working. Dont give up and keep pressing neuros and the like. THis forum is amazing and the people that have fought for the things in it are who i credit my opportunity to get the procedure to. Sure some will get relief, some will get scared, some will get overwhelmed and some so focused that they will miss the presence of their own kids growing up and telling stories about school. JUSt PLEASE BE CAREFUL PEOPLE. I dont want to be the gloom and doomer and i hope i am not coming off that way, but i am a realist and i want you all to move forward from this experience, not backwards.

The theory has been proven. Zamboni has showed us that. But lets face it this disease is as elusive as a buck in the woods. It doesnt make any sense. Why am i using a cane today for the first time since diagnosis and my 42 birthday is tomorrow? Why are my jugular veins 75% closed? why why,why,why,why,why?

I love reading how people are doing awesome after liberation. It gives me goosebumps. Im not. Its just the way it is. I feel someone has to be the fall guy. Hate me or respect me. I care about people. Its my pride and my demise.
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Is liberation really the cure ??

Postby silverbirch » Thu Apr 22, 2010 7:32 am

Well now maybe not the whole cure ....and it may never BE ON ITS OWN but it is a MASSIVE piece of the pie, for me its as significant as a LP in diagnoses & treatment of MS.
I base this on real testimonies then the supporting scientific evidence.

PEOPLE WATCHING - Another bit of supporting evidence the way SOME neuro are throwing their dummies out of the pram and their ignorance to CCSVI when asked about something that ‘s got a profound impact in their field and a knock on effect to the people they signed up To Care For.. this alone shows they need to sit up and take stock and share the platform.

Yea I would say Liberation works!!!

Silver
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Postby shye » Thu Apr 22, 2010 1:58 pm

thegreekfromthed
sending lots of love and light, and wishing you a grand happy birthday--and may somehow your symptoms abate. Thanks for your honesty.

Have you thought to try Inclined Bed Therapy? Incredible difference for me within 1st days, and continues to get better, or same--never worse.
http://www.thisisms.com/ftopict-8535.html
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Postby prairiegirl » Thu Apr 22, 2010 2:56 pm

@THEGREEKFROMTHED I also thank you for posting your procedure results and experience. It is important to hear from as many people as possible and I think the decision (especially to go to another country at considerable expense) is not one to be taken lightly. We are hearing so many positive results, but it is prudent to weigh these against outcomes such as yours. It seems that there is so much being discovered, and yet so much still to learn about this disease that's "as elusive as a buck in the woods" (good one :) Have a great birthday, and much respect to you for sharing. Keep your hope--good things are happening!
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Re: cure

Postby Lyon » Thu Apr 22, 2010 3:10 pm

..
Last edited by Lyon on Tue Jun 21, 2011 4:57 pm, edited 1 time in total.
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Postby Loobie » Thu Apr 22, 2010 3:30 pm

It's my b'day too! Well the 23rd anyway!
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buck in the woods

Postby THEGREEKFROMTHED » Thu Apr 22, 2010 3:43 pm

happy bday loobie. thanks to all of you for understanding...got to keep going. the only way is through this crap!
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Postby L » Thu Apr 22, 2010 3:49 pm

It appears to cure the underlying causes of multiple sclerosis. I don't think you can say that of LDN.
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Postby cheerleader » Thu Apr 22, 2010 3:53 pm

Haven't seen this thread, but wanted to just say that there is a reason why Dr. Zamboni asks us to take the research to our local interventional radiologists and vascular doctors, and to stay in our own countries for "compassionate care." Followup care is essential. We found that out at Jeff's 2 month check-up, where his endothelial lining was thickened and one stent needed to be reballooned. Had we traveled out of state or out of country, would he have had a check up? I know patients are scrambling to get follow up care once they get home from their "Liberations" and that really breaks my heart. And I think that's why Dr. Zamboni is urging caution. Restenosis is a huge issue-especially in the jugular veins.

This procedure is not one sized fits all...there are still too many unknowns. And this is not accusatory, Lord knows I understand the urgency to get treated. But to call this a "cure" is misleading. We have no cure for stroke. We have stroke prevention and stroke rehab. I believe CCSVI is a similar situation. Time will tell-
Lew--have a Loo-tastic b-day!!!!! And Greek, I wish you hope and healing for your day.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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