the 'Random CCSVI Notions' thread

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the 'Random CCSVI Notions' thread

Post by zap » Thu Oct 29, 2009 6:04 am

It seems like many of us get random ideas about how CCSVI night be connected to some other thing - sometimes they don't seem worth mentioning in their own thread. I thought it might be neat to have a place to put the results of these brainstorms - if they happen to get some traction in here, perhaps at that point break it out into a new thread.

The idea being that nothing is too silly here, or too unsupported - if you have an idea and want to bounce it off some other heads, post it!

I'll start with one thats been on my mind for a while, but seemed too silly and shallow to post -

Hair loss and CCSVI!

In recent years my hair has been thinning up top, and according to popular genetics, this should not be - my maternal grandfather didn't get thin hair, he got grey hair darn it!

Anyway, the same veins that drain the brain also drain the scalp, I believe - and poor oxygenation is one of the suspected causes of hair loss.

So whatya think guys - might stents stop progression - of hair loss?


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Post by skydog » Thu Oct 29, 2009 8:46 am

Great idea zap. Lots of thoughts come and go for all of us to be sure. Now hair loss one could only hope that restoring blood flow will stop hair loss. Mine is also disappearing at a rapid rate in the past few years. The good part is added cooling for a my warm head. Not all bad you see... Cheers, Mark

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Post by mrhodes40 » Thu Oct 29, 2009 8:47 am

This made me laugh... :lol:

but then again Montel is bald............ heyyyyyy......

But why wouldn't MS gals get bald then? I am absolutely not having hair issues and I have MS for a long time.

fun thought.... :wink:
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Post by skydog » Thu Oct 29, 2009 8:52 am

Some gals might be experiencing thinning hair. Glad your not Marie, But your Beauty goes way beyond appearance. Cheers, Mark
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Post by ozarkcanoer » Thu Oct 29, 2009 9:53 am

Blood pounding in my head.

My head gets very hot (remember, the jugulars and azygous drain the brain and help cool the brain).


Excruciating headaches !!!!!

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Post by HappyPoet » Thu Oct 29, 2009 10:34 am

Good thread!

I have thinning hair which I blame on my MS medications. . .

BUT, I blame everything on my MS or the meds I take for my MS.


EDITED to add the following:

This is the flip side of your thread . . . it's about what may have caused my CCSVI... specifically, and most importantly, the "venous" part.

In 1961, during my mother's pregnancy for me, she attempted suicide and was given about a dozen EST treatments -- Electric Shock Therapy treatments -- of the kind shown in the movie "One Flew Over the Cuckoos Nest."

I researched when during fetal development the venous system in the brain is formed, and the answer coincides *perfectly* with when my mother was given the treatments during the pregnancy.

Is there another thread where this would be better suited?

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Post by Shannon » Thu Oct 29, 2009 11:25 am

When I had my last bad relapse, it started with extreme heat eminating from my head. I was severely fatigued. One day, my daughter touched my head and said "Boy Mom. Your head is REALLY hot." A few days later, my 4 yr. old son told me that my head was very hot. It was the worst relapse I have had thus far, culminating in having to have IV steroids so I could walk. :( I was actually exposed to hand foot and mouth disease just prior to all of this, when I had a boy over for a playdate with my son and the Mom called the next day to say the boy had it. My son got a fever but no blisters. I'm pretty certain that it is what set it all off for me. I also had a pneumonia vaccination just prior, but I don't really blame that at all. Interesting!

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Post by Loobie » Thu Oct 29, 2009 1:36 pm

I always tell everyone my thinning hair is just exposure of the solar panels on a sex machine :lol: . But seriously, and not to argue at all, just to give a contradictory story, my hair STOPPED thinning since all of this. I was on the fast track to the "Gerber baby ring" and it just stopped thinning. Now I'm just half bald! I'll be shaving my head once winter is over. Not Mr. Clean, but same clipper setting for hair and beard!

I do, however, think the heat thing is spot on. I remember a while back I talked about even when I was in top shape I would get beet face when I ran or played racquetball. I mean extreme enough to where people would comment on it and I was in very, very good shape but my head would get hot as a firecracker.

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Post by Hope66 » Thu Oct 29, 2009 2:17 pm

Hi all...

I'm newbie here (I did post in the intro thread at some point) and I'm still getting my head around CCSVI.

How about this....if CCSVI is congenital, and if that's due to genetics rather than some other cause (environmental?) it's possible we're all distantly related. How crazy is that!

Dx March 2003

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Post by Terry » Thu Oct 29, 2009 5:21 pm

I have alopetia areata. (Hair loss in circular patches).
This started for me in the same era as my first migraines- 1985-1988ish. Whenever I have a flickering thought that something more recent "caused" my MS, I remember back to that time. Though I had no numbness etc then, I think those things were my first glimpses of this disease.

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Post by Hoping4thebest » Thu Oct 29, 2009 5:39 pm

How about bad headaches and stuffed up head (the one on top - lol) after Viagra or cialis? Blood seems to flow faster up there!

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Post by cah » Thu Oct 29, 2009 8:21 pm

What I'm wondering about is if there could be "mild" forms of stenosis (perhaps those without reflux) which do not lead to lesions and MS, but cause some side effects of it, such as depression, bladder issues or reduced activity.

As far as I have understood, there are (or might be) three effects from the stenosis:
- insufficient blood flow
- iron accumulation
- blood parts that cross the blood-brain-barrier

Perhaps there are forms of venous insuffiencieny which do not have (all of) these effects and thus do not cause MS, but are negative as well.

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Post by magoo » Fri Oct 30, 2009 1:58 pm

Migraines and pain?
With my first exaserbation (which was a doozie) I had a lasting left sided ache beginning at the base of my skull and reaching up and down my body. I also began having migraines at this time. No one could explain it or find a reason for it. My doctors eventually settled on Fibromyalgia. Could it be that CCSVI caused this pain? I ask because since my surgery.......I have NO MORE PAIN. This is so huge for me!! Has anyone else had pain disappear?
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

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Post by wonky1 » Fri Oct 30, 2009 2:52 pm

Here's an idea, well it kinda makes some sense to me.
When I used to smoke it made the M.S. much worse. I would get paralysed and drop cigarettes in my lap, so I stopped. As nicotine is a vascular constrictor, do you think that it was making a bad situation with vascular drainage even worse. It was a fairly immediate effect so I don't know if I can blame ccsvi as from what I've gleaned on the subject it is an accumulation of iron and deoxygenated blood over time that causes the problems.
Makes me wonder though.

Also the folks who get relief from marijuana are maybe benefiting from it's vasso dilator properties?

I still have loads of hair at 43.

When I could still do cardio vascular exercise, my face would glow red and feel like it was on fire.

I often get one of my ears glowing red for no good reason.

Food for thought maybe?

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Post by CRHInv » Fri Oct 30, 2009 3:00 pm

Hi Wonky,
Here is a link to a previous thread about smoking:
I would get paralysed and drop cigarettes in my lap, so I stopped.
Thank goodness you quit!

Take good care, Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

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