Two month update

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

Two month update

Postby CaptBoo » Sun Nov 28, 2010 1:04 pm

It's been two months since venous angioplasty in Atlanta. The major news is that I can say without doubt that nothing has gotten worse. I have the energy I had five years ago. My walking is much better most of the time, until I get tired, then the foot starts to drop. I can again walk in near darkness. I had totally lost that ability. My balance is better. I think it's all getting better very, very slowly. But if you're concerned, that's not a scientific double blinded study. It is me and in this case that's all I care about.

A few random thoughts: 1). Smoking makes me much worse (immediately). 2). The bill from Atlanta Access Care was just under $20,000. BC/BS covered all but $1,700. That's what it cost me. 3). I had no after-care, no blood thinners and of course no complications. I travelled 1500 miles for the procedure and had no plan for local after-care. 4). Stents would be a significant game-changer, I advise avoidance if at all possible. 5). The tone this forum has taken is very off-putting. I'm glad I did all this before it got this way. I don't think I would have spent the time here if it was this way when I got here. 6). I really, really, really thank those that answered my questions and contributed their thoughts to this forum, and sent good vibes my way. 7). At this point I am sure that my MS symptoms were caused by iron deposition caused by reflux caused by venous stenosis. It will take time and nerves that are dead won't come back, but the brain is adaptable (see the book "The Brain That Changes Itself"). This disease will become a closed chapter in my life.
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Postby prairiegirl » Sun Nov 28, 2010 2:48 pm

Thanks for posting your update, Captboo; glad you have some improvements. It is important to hear the results that people are experiencing as time goes on, so it is much appreciated that you shared yours here. Hope you will continue to update, and can ignore some of the "off-putting" missives. :)
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Re: Two month update

Postby CCSVIhusband » Sun Nov 28, 2010 4:06 pm

CaptBoo wrote:It's been two months since venous angioplasty in Atlanta. The major news is that I can say without doubt that nothing has gotten worse. I have the energy I had five years ago. My walking is much better most of the time, until I get tired, then the foot starts to drop. I can again walk in near darkness. I had totally lost that ability. My balance is better. I think it's all getting better very, very slowly. But if you're concerned, that's not a scientific double blinded study. It is me and in this case that's all I care about.



You're right, you're the only one that truly matters to you when it all comes down to it ... who cares if it's double blind or not ... if it's real to you, it's real.

Congratulations!
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Postby Cece » Sun Nov 28, 2010 4:53 pm

Fantastic results, CaptBoo, very glad you're doing well.
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Postby CaptBoo » Sun Nov 28, 2010 5:31 pm

cece congratulations to you and I can't wait to hear your updates.

Boo
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Postby CaptBoo » Sun Nov 28, 2010 7:31 pm

CCSVIhusband. You are not concerned. He has yet to weigh in on my positive anecdotal evidence of the efficacy of venous angioplasty in relieving symptoms commonly called MS. Perhaps he will spare me his venom.
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Postby scorpion » Sun Nov 28, 2010 7:53 pm

CaptBoo wrote:CCSVIhusband. You are not concerned. He has yet to weigh in on my positive anecdotal evidence of the efficacy of venous angioplasty in relieving symptoms commonly called MS. Perhaps he will spare me his venom.


It is not that we do not believe people's anecdotal evidence but that we simply question how much of people's "improvements" are the result of the placebo effect. That said I am happy you have found some relief from some of your symptoms.
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Postby soapdiva884 » Sun Nov 28, 2010 8:03 pm

scorpion wrote:
CaptBoo wrote:CCSVIhusband. You are not concerned. He has yet to weigh in on my positive anecdotal evidence of the efficacy of venous angioplasty in relieving symptoms commonly called MS. Perhaps he will spare me his venom.


It is not that we do not believe people's anecdotal evidence but that we simply question how much of people's "improvements" are the result of the placebo effect. That said I am happy you have found some relief from some of your symptoms.


First of all yay for you! I am so glad your doing well and I pray you continue to do well.
Secondly, my bf's "improvements" are NOT placebo! He DOES have more energy, less wobbly walking, clearer thinking, warmer hands and feet. All this with ballooning of ONE vein that was 70% occluded. Wooohooo!
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Postby HFogerty » Sun Nov 28, 2010 8:06 pm

For the record, my anecdotal evidence would be no more restless legs (diagnosed since 2008 and on medication daily for same) or need for medication since my procedure, everyday tremor in my hands gone, fatigue gone and urinary incontence gone (among other improvements). Treated a little over a month and a half ago. If that is the anecdotal evidence that does not stand up to other people's "scientific" standards, so be it. Call me anecdotal! I did not realize the placebo effect would last over a month and a half - silly me - what was I thinking!
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Postby scorpion » Sun Nov 28, 2010 8:15 pm

HFogerty wrote:For the record, my anecdotal evidence would be no more restless legs (diagnosed since 2008 and on medication daily for same) or need for medication since my procedure, everyday tremor in my hands gone, fatigue gone and urinary incontence gone (among other improvements). Treated a little over a month and a half ago. If that is the anecdotal evidence that does not stand up to other people's "scientific" standards, so be it. Call me anecdotal! I did not realize the placebo effect would last over a month and a half - silly me - what was I thinking!


I am not saying what you are experiencing is a placebo effect but simply that you can not just discount it. From a recent study:

Placebo Effect in Parkinson’s Disease


Clinical evidence of the placebo effect has also been reported. In a follow up study of quality of life of 30 PD patients who had received either fetal tissue transplants or sham surgery, Dr. Cynthia McRae reported a strong placebo effect.

"Those who thought they had received the transplant at 12 months reported better quality of life than those who thought they received the sham surgery, regardless of which surgery they actually received," … and “objective ratings of neurological functioning by medical personnel showed a similar effect.”

It appears that the placebo effect can have a decisive influence on clinical trial outcomes and perhaps also on how well patients respond to treatments for PD. The importance of the expectation of benefits on treatment outcomes should be considered in the design of clinical trials. For more information, read, “The healing power of placebos” on the FDA website.
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Postby HFogerty » Sun Nov 28, 2010 8:24 pm

I don't see how the placebo effect would literally stop the approximatley 500+ periodic leg movements nightly (documented on my sleep study) when I am unconscious. I know for a fact that they are gone. I am very well educated and know what the placebo effect is and is not. No need for directing me.
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Postby scorpion » Sun Nov 28, 2010 8:30 pm

HFogerty wrote:I don't see how the placebo effect would literally stop the approximatley 500+ periodic leg movements nightly (documented on my sleep study) when I am unconscious. I know for a fact that they are gone. I am very well educated and know what the placebo effect is and is not. No need for directing me.


I just wanted to clarify that the placebo effect can last for up to a year as it did for many in the article above. When you said you did not know it could last for one and a half months I just pointed out it can. Never mind. I am sure your improvments are not placebo and you are highly educated.
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Postby CCSVIhusband » Mon Nov 29, 2010 7:08 am

^ let them keep believing these things and digging their own graves that they will have to lie in one day when we get to all say "I told you so" ...

I have a sneaking suspicion deep down they know it's not placebo (there are too many accounts of the same thing at this point, people who have had the same symptom for years with nothing helping, then they are liberated and it is gone). I also have a sneaking suspicion that they know there is something to CCSVI ...

But since they are "skeptics" they won't admit it for whatever reason. Be it financial gain (potentially in the case of Colin Rose, or if they have a job - neurologist or drug company marketing manager that CCSVI would potentially impact), or be it sheer ignorance.

As more and more accounts tell the same story though, do you notice they've gone from "skeptic" to hard entrenched in their "opposition" and keep digging their grave deeper and deeper, making it harder to one day climb out of? They keep pointing to the same 5 or 6 stale arguments ... we're all seeing through them more and more, and they aren't holding the same water they once did.

2011 is going to be a big year for CCSVI ... :lol: ... and so will 2012, 2013, 2014 ...
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Postby BooBear » Mon Nov 29, 2010 7:18 am

Even though I am experiencing a new symptom after the procedure, I can say for certain that the procedure is the direct reason that my energy is up, brain fog is gone and that overall I feel tremendous.

I did not go into this with the expectation of a cure, but rather as the first step in allowing my body to recover properly. There are decades of issues associated with my venous malformations- I believe that- and I do not believe that the iron flushes out in an afternoon. Time and proper recovery will make a difference.

The way I see it, I am no worse off than I was when I was taking all levels of drugs, including chemo. And now, I take NO drugs and feel fine. The numbness in my leg? It sucks. But I lost feeling in my left arm in 2008 while ON all the drugs...and never recovered feeling, either.

Call it anecdotal. Call it placebo. Call it whatever you please, but until someone shows me a scientific study that proves all of our positive outcomes are directly tied to a placebo effect, you won't call it a convincing argument.
Three veins angioplastied.  One renewed life.  
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Postby David1949 » Mon Nov 29, 2010 11:26 am

Boobear I don't want to nag but if you're still smoking, you ought to quit.
I don't need to tell you how much trouble it causes you because you already know that.
I quit over 30 years ago and that was one of the few smart things I've done in my life.

Tips for quitting
1) Don't hang around with other smokers if you can avoid it
2) Keep a dish of hard candy nearby and take one when you feel the urge to light up.
3) Shower often. You can't smoke when you're in the shower.
4) Never take a cigarette thinking you'll just have one. One turns into two, then three and then you're back to smoking as usual.
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