Do-It-Yourself Liberation

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

Do-It-Yourself Liberation

Postby Johnson » Fri Apr 30, 2010 1:07 am

No, I have not been rooting around in my tool box.

Over the years, I have found that massaging my neck has helped me feel a bit better. I always thought that a blocked Eustachian tube was a culprit. Since I learned of CCSVI, and especially since Doppler revealed that my IJVs do not collapse, I have taken to stroking down on my jugulars - trying to push the stale blood out. Just a while ago, I got quite aggressive, and dug deep, pushing down towards the occlusions. I got weird sensations in my ears that were very good, and the tinnitus lessened and changed pitches. My posture seems to have changed a bit, in that it is not an effort to sit straight - it is if I can't help but sit straight. My dizziness has subsided a bit, and I feel strange - in a good way, but also weird - my arms seem longer, but weaker. I feel taller. I don't feel so congested in my face, neck and throat. My permanent headache worsened for a few minutes, with a burning sensation in my sinuses, now it is gone.

This is the reverse of doing the Valsalva to open the stenosis - which can only push blood the wrong way.

I just tested myself to see if I am having a stroke (I said I feel weird!), but I'm not.

I think that I just gave myself a temporary, and minor, Liberation treatment. No sharp implements or hose connectors required.
My name is not really Johnson. MSed up since 1993
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Postby eric593 » Fri Apr 30, 2010 1:16 am

Scary images of the learned military technique of soldiers killing people by applying pressure to that area of the neck of their enemies comes to mind. Be careful please...

How are veins that don't collapse when upright fixed anyway? This suddenly doesn't become a matter of opening up narrowed/blocked veins. Is this a problem if veins that ordinarily collapse when upright remain open? How is it fixed then if this is a problem?
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Postby sbr487 » Fri Apr 30, 2010 1:23 am

Its become a routine for my wife to give a 5-10 min massage in my neck area with an ayurveda oil everyday for last 1 year. It does help.
Maybe thats the reason why accu... helps.
As they say, once the problem is clear, one can apply logic.

Johnson, I pray that you get better everyday until you get liberated.
Better still, you should better to such an extent that liberation is not necessary...
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Postby Johnson » Fri Apr 30, 2010 1:57 am

eric593 wrote:Scary images of the learned military technique of soldiers killing people by applying pressure to that area of the neck of their enemies comes to mind. Be careful please...

How are veins that don't collapse when upright fixed anyway? This suddenly doesn't become a matter of opening up narrowed/blocked veins. Is this a problem if veins that ordinarily collapse when upright remain open? How is it fixed then if this is a problem?


Not sure of your question, eric. The veins don't collapse because they are in use, but because the blood cannot get out. A Valsalva "flares" the stenosis, so I am thinking that the pressure from the massage pushes the stale blood out, and the IJVs then collapse.

As to military techniques, I couldn't comment, but I would think that closing down the carotids would certainly cause unconsciousness, and ultimately death. But that would take a good 3 minutes, and as soon as you passed out at 1:26, the blood would flow again.

Thanks sbr. I hope that we are all ourselves again very soon!
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Postby eric593 » Fri Apr 30, 2010 3:42 am

Outside of your home remedy, do you know how an IR might treat your problem?
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Postby zinamaria » Fri Apr 30, 2010 3:46 am

Hey Johnson,

I think you are onto something here. I too do massage on my neck but I am going to dig deeper. Also I do neck stretches every day in my yoga practice because I think it may help keeping the veins 'elastic' or more flexible as we know everything stiffens with age. But in the yoga world one of the greatest benefits is keeping the spine flexible which will aid us as we age, so we don't snap like an old branch on a tree. I have applied this thinking to my neck with the daily stretches. So too with massage, I think, and acupuncture which absolutely helps circulation.

Thanks for the post, I am off to try the serious massage. So glad it brought some relief!

Zina
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Postby Cece » Fri Apr 30, 2010 7:55 am

For me, massaging my neck tends to make me feel worse.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby bestadmom » Fri Apr 30, 2010 9:59 am

Hi Johnson,

I know you commented online to my husband's DIY liberation kit. Perhaps with our fine doctors being shut down awaiting IRB approval, it will maKe up for lost time (click on the link below).

Dr. Sclafani suggested a discount and gift with purchase for buying two. Any takers???
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Postby Johnson » Fri Apr 30, 2010 2:21 pm

eric593 wrote:Outside of your home remedy, do you know how an IR might treat your problem?


Hi eric,

I'm not sure what the IR will do, I presume balloon venoplasty, at the least, and stents (ugh) if that doesn't do it. I will find out in Poland in June.

Zina - I wish I had the discipline for yoga. Maybe after my body is freed...

Cece - I hear you. Just about everything makes me feel worse, and today, I notice a minor ache on one side of my neck. It could very well have been an example of placebo, or just the "3 o'clock WOW", but I do feel more stable today, and my posture is still very erect. I did the massage before I got out of bed, and I am not bouncing off of walls today. I am still going to get the professionals to deal with my stenoses though.

Bestadmom - Your DIY kit still cracks me up. Maybe a partnership?
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Postby Cece » Fri Apr 30, 2010 4:43 pm

Johnson wrote: I hear you. Just about everything makes me feel worse,


This made me laugh...because, yes, standing up also makes me feel worse, as does cooking, as does fill-in-the-blank.

Best of luck to you in Poland. These are exciting times.
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CCVSI

Postby lorimac » Sun May 02, 2010 9:04 am

I HOPE that the liberation treatment becomes available, and a COVERED treatment under our medical plan (Canada), I have read about so many people that have had this treatment in Poland, Bulgeria (I think), and the eastern US. Albeit, for a price, but when you are virtually destitute you can only hope for the MS societies, Doctors (both family dr & neuro's) and the GOVERNMENT agree to cover it! If I am willing to go for it, then why not?
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Re: Do-It-Yourself Liberation

Postby ttt1 » Thu May 06, 2010 4:38 pm

Johnson wrote:I got quite aggressive

Don't get too agressive.
Internal jugular vein thrombosis associated with shiatsu massage of the neck
http://www.ncbi.nlm.nih.gov/pmc/article ... p00142.pdf

Some MS like symptoms are mentioned, but also "Magnetic resonance imaging (MRI) scan of the brain showed infarction with haemorrhage in the left parietal lobe"
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Re: Do-It-Yourself Liberation

Postby Johnson » Thu May 06, 2010 4:46 pm

ttt1 wrote:
Johnson wrote:I got quite aggressive

Don't get too agressive.
Internal jugular vein thrombosis associated with shiatsu massage of the neck
http://www.ncbi.nlm.nih.gov/pmc/article ... p00142.pdf

MS like symptoms are mentioned, but also "Magnetic resonance imaging (MRI) scan of the brain showed infarction with haemorrhage in the left parietal lobe"

Yikes!

Thanks for that.
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Postby lilsis » Thu May 06, 2010 7:21 pm

gee, notice the similarities of what this bloke experienced and what a relapse feels like? but no, the results of venoplasty for ms patients are just imaginary, the good ol' placebo affect. couldn't at all be due to the resolution of clots that form in the pooled blood of stenotic jugulars.

symptoms of venous thrombosis:

severe, constant right occipital headache
blurred vision.
weakness and paraesthesia of his right arm and leg, and
mild agraphia (unable to write clearly) for kanji characters
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