Life returns for MS sufferer following U.S. surgery

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

Postby bluesky63 » Wed Mar 30, 2011 7:48 am

FYI, I register as a "guest" when I read TIMS from another device (for instance, one of my children's computers, a friend's computer, a phone) or I have forgotten to log in. "Guest" doesn't have to mean "non forum member." If I do this from several devices at the same time will I appear to be a bunch of guests? As well as still being a member, if I am also still logged in on my own computer?

Multiply this by a few bluesky-types, and the statistics don't mean that there are fluctuating masses of naive people who need to be saved from their own ignorance. :-) Especially not with a big sticky where people post if the procedure did not work for them; a sticky detailing risks; active threads where ANYONE can ask respected doctors any question at all about the whole shebang; frequent posts about experiences both good and bad; etc., etc., etc. In other words, the natural process of sharing information. I think it's working just fine and we should have faith in TIMS. :-)

Love from bluesky63
TIMS member for six years!

P.S. My congrats to the original reason for the thread! :-)
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Postby greenmtns » Wed Mar 30, 2011 8:03 am

I'm new here and to MS. But just some observations I have seen with symptoms some people and that I have that would make me think there might be a blood flow issue. Cold hands and feet, inverted sleeping helps(allowing blood to drain from the head easier), excersise has helped many people (gets blood flowing). I am interested in CCSVI and have been looking to get it done somewhere but don't know where. I have read many good posts about it and I have a read many negative posts too. I might hold off a while to see if they can get some new procedures to reduce unwanted side effects.
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Postby Cece » Wed Mar 30, 2011 8:16 am

Welcome, greenmtns, sorry that you've gotten a MS diagnosis, but I am glad you've found your way here. Your approach seems balanced. :)
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Postby CCSVIhusband » Wed Mar 30, 2011 10:17 am

greenmtns wrote:I'm new here and to MS. But just some observations I have seen with symptoms some people and that I have that would make me think there might be a blood flow issue. Cold hands and feet, inverted sleeping helps(allowing blood to drain from the head easier), excersise has helped many people (gets blood flowing). I am interested in CCSVI and have been looking to get it done somewhere but don't know where. I have read many good posts about it and I have a read many negative posts too. I might hold off a while to see if they can get some new procedures to reduce unwanted side effects.


A few of us know of a doctor in your area (New England) with a great deal of CCSVI experience ... let us know if you'd be interested ...

2 of us posted on this particular thread page.
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Postby fogdweller » Wed Mar 30, 2011 11:17 am

Lyon wrote:The comments are also interesting....

Hi Sharon, My name is Tim and i had the ccsvi treatment sept 2009 and it is now almost aPR 2010 and 1 of my Jugular veins and vertabrae veins have closed up again on the left side.My right side is still o.k. Because the blood has to travel across to the other side to get out is doing more damage than before. i was cutting the grass is Sept and now can hardly walk. I have now been diagnosed with primary progressive. I take no drugs at all and have had M.S for 20 years

I was liberated @ a clinic in Albany. The immediate results were outstanding! Two weeks later, my symptoms began progressing again, right hand and foot got very cold and i no longer had much balance - back to walker for me! I'm living in Quebec on disability, have no savings and was told the treatment would not be repeated at that clinic. Zero follow up, and now I am at a complete loss. What can I do?!


I agree, lyon, that we need to keep a balanced view, and alothough I strongly doubt it at thi point, there may even turn out to be no benefit at all to anyone from treating CCSVI. We all are awaiting good studies and they should be out soooooon??!!

It is interesting to note that both of these may well have been helped by treatment but lost the positive benefit because of restenosis. The first patient, Tim, knows for a fact he restenosided. The second patient strongly suspects that since he had very good results immediately post procedure, lost those benefits, and has had and then no follow up at all.

I am exactly in this catagory. I had some remarkable results immediately post procedure and then they faded and I have been progressing, possibly a bit faster than pre-procedure. I had strong reson to suspect some thrombosis but no follow up at all since. I am now 6 months post, and am working on getting full follow-up. I will let everyone know what I find out when I find out. I am crossing my fingers that I did not restenose and then that turned to scar tissue and really plugged up my jugulars.
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Postby Lyon » Wed Mar 30, 2011 1:48 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:26 pm, edited 1 time in total.
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Postby fogdweller » Wed Mar 30, 2011 2:14 pm

Lyon wrote: Hard to believe your moniker is "fogdweller" since you've made the first coherant response that I've seen in this thread.


Actually I am fogdweller because I live on the coast in Northern California. The photo in my avitar was taken out my back window.
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Postby Lyon » Wed Mar 30, 2011 2:32 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:27 pm, edited 1 time in total.
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Postby Cece » Wed Mar 30, 2011 4:42 pm

You have to admit, there are a lot of wonderful outcomes out there. I wouldn't be able to post these sorts of quotes if they weren't published in the first place.

Here is one that I posted where the patient had a neutral nothing-changed sort of outcome:
www.thisisms.com/ftopict-15363.html

Here too is Majir Mostic:
www.thisisms.com/ftopict-14667-majir.html+mostic

:cry:
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Postby Lyon » Wed Mar 30, 2011 5:38 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:27 pm, edited 1 time in total.
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Postby CenterOfGravity » Wed Mar 30, 2011 6:29 pm

Lyon wrote:
Cece wrote:You have to admit, there are a lot of wonderful outcomes out there. I wouldn't be able to post these sorts of quotes if they weren't published in the first place.
Yes, if I wanted to replace every vestige of science with nothing more than layman opinion, I would have to admit that.

So the positive anecdotal information means nothing, yet you latch onto every single morsel of negativity. Thing is, the so-called "naysayers" here don't present a balanced view of their naysaying, so I think the newcomers that you profess to want to help just brush it off. That's what I did when I first came here. The extremes on both sides aren't that useful as datapoints. I personally think it's foolish to completely brush off every positive anecdotal result, just as people who are researching it to decide what to do shouldn't brush off the negative results. Being skeptical isn't the same thing as only seeing the negative. It means being willing to evaluate all the data, even the positive. The issue I see with some people here is that they lose credibility because they give NO credence to any of the positive outcomes, any of the positive research, any of the positive presentations given by top docs at all these conferences, any of the experiences discussed here by the doctors themselves. There are people on TIMS who expresses the positive, while always mentioning the issues and risks, and says people should stay local, and that followup care may be needed. Honestly, I think the healthy skepticism would be taken more seriously if it wasn't 100% unbridled disbelief in the possibility that the CCSVI hypothesis could have some validity.
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Postby fogdweller » Wed Mar 30, 2011 6:34 pm

Lyon wrote:
fogdweller wrote:Actually I am fogdweller because I live on the coast in Northern California. The photo in my avitar was taken out my back window.
:oops: All the time you've been here I assumed it regarded "cogfog" and that the pic was just kind of a play on words.

Awesome friggin' view. Please attach a bigger version some time that I can make out better.

I was only in California once about 35 years ago. My sister in law lived in Petaluma let me use her Datsun B-210 to go to San Francisco. I filled it with gas and parked it and when I came back to the car the darned hill was so steep that I had a river of gasoline going down the road. Pretty area, but I like my nice flat Michigan!


See your pm
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How's and why's

Postby MegansMom » Wed Mar 30, 2011 6:36 pm

Some of the how's and why's
As I understand them

There are many pathological things occurring due to CCSVI & MS

ANOXIA & HYPOXIA , mean no oxygen or lower than needed oxygen ( varies widely- a good analogy would be a closed room with toxic paint in it with no smell- this is what CCSVI Patients- experience- lower than needed oxygen because it's used up faster than the used up oxygenated blood can circulate back to the heart- lung-heart- brain- the symptoms are- headache or fatigue or depression or tiredness or confusion or impaired memory or not being able to follow Secondarily the body compensates by sparing the muscles to save the brain - muscles with lower than normal oxygen can be spastic- we see evidence of this in people with cerebral palsy, the lower the oxygen level the less apt for the condition to be temporary lack of oxygen is the key that triggers most signals and causes the problems.

HYPOGLYCEMIA- this is lower than normal blood glucose ( our fuel) this occurs in the brain due to the longer times that it takes the brain to drain off the used up blood glucose. The brain uses 70% of the glucose we eat for thinking- when the glucose level is low , we can get tired, hungry, cranky, irritable and fatigued This can also effect muscles, no fuel means impaired function

IRON- iron is important- we need it in our Red Blood Cells ( as oxyhemoglobin) it carries our oxygen which is needed by every cell to burn our fuel. But the RBCs are fragile and can break if there is blood flow turbulence. Iron outside of the RBC is an irritant and inflammation maker. Just like rust oxidizes......iron can be bad in the wrong place.

ENDOTHELIN1- a polypeptide that causes veins (and arteries) to get fibrous and hypertrophic when in high levels.....pwMS HAVE VERY HIGH LEVELS OF E1 without a known cause. Except we know that increases in sheer stress, low u2 and hypoglycemia all trigger it's production ( this sounds like CCSVI to me)

DIFFERENCES IN THE DEGREES OF FLOW IMPAIRMENT- lots of CCSVI VARIETIES- more progressive MS Patients have more impaired flows. More impaired flows mean worse hypoxia and worse hypoglycemia and higher E1 levels.

MRI LESIONS- what are they ? Scars? fibrosis? FRESH ONES LIGHT P WITH GANOLIDIUM- but only for about 6-8 weeks. Is this how long it takes the myelin to be damaged and set up inflammation as the debris is exposing a live but damaged axon....when other parts of the body are damaged by hypoxia they get inflamed too. Are these lesions fibrin sandbagging the egress of blood wanting to keep it going the correct direction?

Okay , then venoplasty occurs- new fresh oxygen rich blood bathes the brain and all tissues..... And saturated the tissues. If the brain has active inflammation this might induce "short circuits" remember the myelin might be off .
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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 Lyon » Wed Mar 30, 2011 7:18 pm

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Postby Lyon » Wed Mar 30, 2011 7:25 pm

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