Why "CCSVI" is Surreal

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

Postby scorpion » Sat May 07, 2011 12:26 pm

@MegansMom
At this point I have seen no proof that CCSVI exists or does not exist just a lot of people claiming to have answers. Zamboni, Marie, nor Dr. Rose have definitive answers about the existence or nonexistence of CCSVI.
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Postby Shannon » Sat May 07, 2011 1:08 pm

Welcome, Lisa! I loved hearing your story, as I also started my journey as a young, new bride. I was only 23 when it all started in 1994, and it took until the end of 2001 to get an actual diagnosis and "go-ahead" for any sort of treatment. By that time, my husband and I had had two beautiful daughters, in 1996 and 1997, and although I was very scared to have been told that I might have MS so soon after marriage, he promised me that he wasn't going anywhere. It has been small comfort, since being a caretaker for someone with MS often leads to resentment and other troubles that I won't even go into. Although we're still together today, the marriage has been far from stable and even at times nothing more than tolerable. Although I am sorry for your marriage not surviving, I am very happy to hear that you eventually found true love. I hope that it will sustain through the hard times to come. We subsequently had two more children after the diagnosis, two boys in 2003 and 2005. Sometimes I really don't know how we make it work with these active boys in our lives and my constant fatigue, but we do. It's not a glorious life, but like Annette Funicello once said, "life doesn't have to be perfect to be wonderful." I understand your feeling of desperation, and until someone lives with what we live with, they have no right to chastise us for believing in faith, scientific miracles or even Jack Kevorkian! It can be the very worst of times, but at the same has been the very best of times, learning what's most important in life and learning to slow down and smell the roses. I look forward to hearing how everything goes for you! I have Blue Care Network of Michigan, which is managed care, so could never even get as far as a referral to a cardiologist. Hopefully things will change for the better for all us when researchers pick up the ball and start investigating this phenomenon to it's fullest, which is what we all deserve.
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Postby Mom2TynZac » Sat May 07, 2011 1:28 pm

Thank you Shannon!

I actually am going to a Vascular Surgeon to do the testing. My Neurologist referred me. I started the ball rolling howeverby calling aroun to different Vascular Groups within my "network" to try to find one that would consider the testing. I finally found one that was willing but needed an informal "referral" from my Primary Doctor or Neurologist. I made an appointment with my Neurologist to find out what he thought of this and to see if he would "support" me, he does/is being supportive and he faxed a referral letter to the Vascular Surgeon requesting he test me via MRV, at least I believe that is the test.

I got the idea to start that way from ccsvi.org website at this link:

http://www.ccsvi.org/index.php/helping- ... -providers
<div>Sincerely,<br />Lisa<br /><br />My Mantra:<br /><br />Nothing in life is ever perfect, but everything can always be worse, therefore; Live, Love, Laugh!</div>
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Postby griff » Sun May 08, 2011 1:50 am

MegansMom wrote:
It's quite easy to see how CCSVI would affect the oxygenation of the brain over time. Eventually the severe brain damage would occur but some symptoms are simply the low level hypoxia. It's quite eay to understand really. The bottom line is many patients are better. Way better! And in many cases the progression is arrested.


I like your analogy and you did an excellent job describing hypoxia and oxygenation of the brain, but I think the conclusions you drew are really bold based on the info we currently have.

"Many patients are way better" I am definetely not in that category. I just heard about them but never saw them. The only patients whom I met after the operation had nothing major improvements that could be seen, even though I noticed they had a totally different perception of themselves. I am also wondering what your daughter symptoms were before the operation. How long before the operation was she diagnosed?

Why do those healthy people have no MS who have CCSVI? Why many MS patients have no CCSVI?

What about the issues raised by vascular specialists?

Those references are all concerned with blocked ARTERIES. They are are of no relevance to "CCSVI". There is no evidence of cerebral hypoxia in MS. To repeat, there is no way that blockage of neck veins could reduce blood flow only to white matter and not grey matter. It would have to reduce TOTAL blood flow and cause unconsciousness before affecting white matter.

Paravertebral venous collateral circulation is quite capable of handling cerebral blood flow with no increase in intracranial pressure. Please read the references I quoted above.


I am not saying that CCSVI theory is wrong, but it still needs to be proved and those legitimate questions raised by vascular specialists or neuros should be answered. I really hope that it will happen in the near future. Many of those people raising questions, like colros, are not against us they just help us getting a better answer to our problems.
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Postby munchkin » Sun May 08, 2011 6:38 am

I just wanted to make a comment that yes, more research does need to be done. But I truly believe that we need more vascular people and less neuro's.

Griff, it is unfortunate that you didn't receive any benefits from the treatment.

My results were fantastic, but it didn't happen on the table and I have talked to a few people who also had more physical issues with MS, results didn't happen until a few days after the procedure. I think the way individuals respond to the treatment is the same as how we each have different responses to MS.
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Postby MegansMom » Sun May 08, 2011 7:59 am

Answer to Griff's questions :

My daughter was diagnosed last Aug 19th. In June 2010 she started to have symptoms, although the first symptoms she wrote off to other causes.

Headaches, intermittent but persistent.
Cog fog ( lack of being able to concentrate ) and memory impairment
Fatigue ( she didn't miss work but she could not get rested, yet she was extremely tired, and she was feeling over worked)
Blurry vision ( she thought she was just getting older eye problems)
Balance impairment ( she even fell in the shower)
Numb anterior thighs
Cold hands and feet
Electrical sensations down both arms
Paralysis of right face ( this lasted 24 hrs) this was in early August
Speech impairment ( expressive aphasia) this started the day of her venoplasies and lasted 3 months after her venoplasties, getting less and less frequent. Last occurrence Dec 2010.
Numb pinkies

On the day of the venoplasies :
Cog fog and headaches left
Fatigue lifted
her vision improved ( it now tests better than 20/20
Her numb thigh area got smaller and smaller and within 1 week the numbness disappeared
She doesn't have L'hermittes sign anymore.

Of note : on MRI she had 1 small spinal lesion and 2 brain lesions and LP was positive for Oligoclonal bodies
Also her paralysis was on the right face and her CCSVI blockage was on the left, and her Azygos wasn't draining but a tricklel....it was all rerouted.
This would strain the Right int jugular and perhaps put pressure on the right facial nerve. Of note also was her paralysis occurred while she was laying down. She is due to have an MRI in July 2011

Her venoplasties were done Sept 21 2010

She works out on a treadmill, goes dancing, works full time, is a mom, kayaks, bikes and leads a very normal life.
By the way she is an Army veteran and serve in Korea and the middle east !
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Cece » Sun May 08, 2011 8:03 am

Cat, you have much to be proud of in your daughter and how wonderful that she is doing so well!!
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ccsvi

Postby zinamaria » Sun May 08, 2011 8:49 am

I've been meaning to say this for a long time: just what is 'Healthy' anyway?

The fact that CCSVI has been found in 'healthy' controls, as well as those of us with CCSVI and MS, does not, to me anyhow, mean much because 'health' is a relative term (I am aware that what I am saying is contrary to the mainstream medical point of view). And who knows that those with CCSVI are not suffering from some other form of ill-health, not yet totally manifested? On my first round, 12 yrs ago, trying to see what was up with my body because I was having symptoms the neurologist looked at me, did a few knee-jerk tests, even took an MRI, in which there was no evidence of lesions and told me to go home, that I was 'perfectly healthy'. And yet I KNEW there was a problem in my body, because, gee, I am having strange sensations doc, and what is going on? But I was tan, lean, 'in shape' as they say somewhere in gym land, and running six miles a day, running a restaurant (killing myself, frankly) etc, etc. So I was 'healthy' and yet I knew I was not, that something was off balance.
Good thing I went for a second opinion, doc.

Since CCSVI is being newly researched, we have no idea what else, what other 'illnesses' are involved. The trials so far, as far as I can tell, are on the POSSIBLE relationship to MS, and this does not necessarily exclude the POSSIBLE relation it MAY or may not have to other disease and discomforts....DIS-EASE, the word comes from somewhere, whether one has a diagnosis or not. How many are dis-eased in their bodies and are just simply ignoring it thinking that's just the way life is.

I have met too many people in my life who are VERY out of touch with their bodies, the body being something most take for granted, like the new car running smoothly until it breaks down, and even then, many do not stop and pay attention. Hardly does one take preventative measures in 'health' until something happens.
Who thinks of death until faced with it??

I am one of the healthiest people I know, in fact healthier than the so-called 'normal' people, or those without diagnosed 'illness'; and yet I have MS (in fact those of us on this forum seem the most in touch with their bodies!). How many undiagnosed illnesses are there out there? And it seems really obvious to me that people who are so-called 'healthy' are not healthy: weak immune systems, organ disturbances, gut malfunctions (bad breath is not just because someone did not brush their teeth) obesity, etc, etc, etc. So who is 'healthy'?
When I am out an about and interact with the human race, I see fatigue, skin issues, obesity, and just because someone may walk a little faster than me, does not mean they are 'healthy'.
And how do we know or don't know that those with CCSVI that are NOT diagnosed with MS don't have other serious health problems that they are not even aware of, because the average person is usually unaware of health issues in their bodies until there is a catastrophe, or full blown symptoms, like with MS. I mean, Fibromyalgia now has a name, so too with Chronic Fatigue, so now what? now that there is a name for it, it is 'real'? When those suffering from symptoms have known for years something was not right?

I am so tired of the word 'scientific' being the end all for 'proof'. WE ARE THE PROOF and all the stories are so important because without them, frankly, there would be no NEED for science! I wanted to see a doctor recently and made the appointment, but then the secretary told me 'oh, just a head's up, don't ask him where he went to school, he doesn't like being asked that." WHAT??????? I said 'So I can't ask him any questions about himself?" She told me he is the doctor and feels when he treats the patient that he is the one asking the questions! (That's over here in Santa Fe, NM where the enlightened people supposedly live).
I canceled the appointment.

This paradigm must be shifted (which is why we are making history with Dr. Sclafani's thread and the other incredible doctors who have entered in a dialogue with us on this forum) and those of us with MS are helping to shift it. This does not mean lack of respect for science and those who have spent a lifetime researching and studying, it means we need to be in a dialogue, as mature, intelligent adults, not in a parent/child paradigm where we are simply 'told' what to do to etc, but one in which we, as patient, as the one with the issues happening in OUR bodies, are viewed as the one who KNOWS a bit about what's going on, and just because we have no name for our pain, does not mean we are without insight, knowledge and intelligence. (An excellent book on this is Elaine Scarry's 'The Body in Pain' where she takes some of these issues all the way to global torture).

Okay, let me see if I have anything else to add.. So, I guess not, on this sunny Sunday morning where they weren't kidding when they said over 300 days of sunshine a year.
Sorry if I repeated myself a few times up there...

z
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surreal

Postby zinamaria » Sun May 08, 2011 9:03 am

This from Wikipedia:

"Surrealism is a cultural movement that began in the early 1920s, and is best known for the visual artworks and writings of the group members.

Surrealist works feature the element of surprise, unexpected juxtapositions and non sequitur; however, many Surrealist artists and writers regard their work as an expression of the philosophical movement first and foremost, with the works being an artifact. Leader André Breton was explicit in his assertion that Surrealism was above all a revolutionary movement.

Surrealism developed out of the Dada activities during World War I and the most important center of the movement was Paris. From the 1920s onward, the movement spread around the globe, eventually affecting the visual arts, literature, film and music of many countries and languages, as well as political thought and practice, philosophy and social theory."



Revolutionary movement? Count me in.
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Postby kjcoop03 » Sun May 08, 2011 9:43 am

At this point I have seen no proof that CCSVI exists or does not exist just a lot of people claiming to have answers. Zamboni, Marie, nor Dr. Rose have definitive answers about the existence or nonexistence of CCSVI.[/quote]

CCSVI is real and is hear to stay
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Postby HappyPoet » Sun May 08, 2011 11:04 am

kjcoop03 wrote:
At this point I have seen no proof that CCSVI exists or does not exist just a lot of people claiming to have answers. Zamboni, Marie, nor Dr. Rose have definitive answers about the existence or nonexistence of CCSVI.

CCSVI is real and is hear to stay


Welcome to TIMS, kjcoop03! :)

I agree with you!! :) :)
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Re: ccsvi

Postby HappyPoet » Sun May 08, 2011 11:06 am

@zinamaria
I agree with you!! :) :)
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Re: Informed, Nervous and HOPEFUL!

Postby colros » Sun May 08, 2011 2:35 pm

@Mom2TynZac

You might think this is "negative" but it might save you a lot of money. You initial suspicion was right. "CCSVI" IS too good to be true. AMC will undoubtedly find "CCSVI" because they are not about to turn away a desperate patient willing to hand them $thousands for a few minutes of work. The real stats are that there is zero scientific proof of any benefit from "liberation" but there is a risk. So my advice is ignore Zamboni and "CCSVI".
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Postby 1eye » Sun May 08, 2011 3:48 pm

Went for a surreal bike ride on my trike today. First time in 2 years. Had far far less trouble getting on and off it (it is very very low to the ground) than I ever did before. (I used to fall all the time when I was mounting/dismounting: once I cut myself pretty badly on a brake disc) I credit that to the same mysterious return of core strength that has me doing sit-to-stand now with ease from very low down. Actually my kinesthiologist/trainer has been having me do 10 or so reps once a week but that doesn't explain it.

Went onto a more busy road by myself, and went fairly fast. Felt good to do a hand signal, then a quick right turn (you have to be fast with front-wheel steering) onto my street.

We had gone over to a friend's for coffee. It sure felt good to get out.

Yee hah! :D
"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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CCSVI

Postby blossom » Sun May 08, 2011 5:32 pm

zinamaria, can't agree more not only with this post but all your other post as well.

you speak the truth and there are a lot of people that take offense and don't want to hear the truth-especially when it will mess with their wallets.

it all full circles around to greed - money!

give the kind of money spent by the big boys to cure ms "and the have come up with 0" to a group of people such as some here on tims who live it and hate it- there could be a real shot of cureing it.
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