Does anyone have another vascular 'problem'? (Birthmarks)

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

Does anyone have another vascular 'problem'? (Birthmarks)

Postby lilaclomax » Fri Jan 29, 2010 10:48 am

Evening all

I have been doing some more research into my medical history, I have a internal haemongioma within the right temporalis muscle... It didn't 'click' until this afternoon that this 'birthmark' is also due to malformation within the vascular system and appears either in the foetus stage or within a couple of weeks after birth, so if I have CCSVI that makes two vascular conditions or one linked one.

Does anyone else have a portwine birthmark or similar or another condition that is linked to the vascular system?

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Postby mshusband » Fri Jan 29, 2010 12:21 pm

Well the reason I've caught on to CCSVI and the reason I believe it is likely is that my wife has poor circulation in the first place.

Which would make sense that she has it in areas around the brain and spinal cord as well.

Her hands and feet have been cold for years. I don't know if any of you had that problem pre-MS diagnosis, but she did. I know that's more common in women than men ... but it may be a telling sign (or maybe I'm just looking for it to be).

On the other hand her mom has had vein issues as well ... so everything I've read about CCSVI makes sense in that it could lead to MS.

I really am starting to believe. When I first read this back in late '09 I was skeptical to say the least, but it makes more and more sense the more you look at it.
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Postby Downunder » Fri Jan 29, 2010 7:22 pm

Yes, I have a birthmark on my neck, right side.
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Postby Jason » Fri Jan 29, 2010 7:29 pm

Yes I have a mark that looks like someone scraped my neck at the hair line and some bumps beside my right ear. I have had these most of my life.
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Postby sonia52 » Fri Jan 29, 2010 10:16 pm

Please excuse my english. I'm french-speaking.

I have been diagnosed in 1980. At this time, there was no internet. It was then difficult to find information on MS. I looked for information in encyclopediaes, magazines, etc. I found some information, including a paragraph where it was said that MS had an effect on small blood vessels around the heart. It made me afraid. I have never forget what I read.

I have many external hemangiomae everywhere. Last summer, I had a pneumonia which caused me excessive pain from the right part of my neck to the upper part of my right leg. Doctors didn't understand why. They asked for a pelvic scan, pulmonary x-rays, etc. They found me a strange parallel blood system from the upper part of the aorta to the right ovary. They spoke of a weird malformation.

My sister and two brothers have vascular problems. My sister have a congenital malformation of the subclavian artery which caused her a cerebrovascular accident when she was young. My two brothers, like my father, have a genetic vascular disease which causes repeated aneurysms. Physicians told them that we have a vascular weakness in our family. My mother had a couple of phlebitis. Until I heard about CCSVI last november, I thought that there was only me in our family that was not affected by a vascular disease. Maybe I was wrong...
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Postby Johnson » Fri Jan 29, 2010 11:56 pm

I have a venous angioma in my right cerebellum, that is said to be congenital (altough I was asked about blows to the head, car accidents, etc.) I have had blows to the head (I am a man), and was in one car accident... However, I am certain that CCSVI is my real problem (and, well, whatever causes CCSVI...)
My name is not really Johnson. MSed up since 1993
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Postby zap » Sat Jan 30, 2010 9:22 am

A neighbor of my moms was told he had MS for decades - recently they changeds his diagnosis and told him he had "strawberry angiomas" - birthmarks basically - all over in his brain. Interesting huh?
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Postby bluesky63 » Sat Jan 30, 2010 9:46 am

It makes sense to look at CCSVI and realize that vascular problems could actually be the umbrella that explains all the other odd stuff.
Last edited by bluesky63 on Sat Feb 06, 2010 9:29 am, edited 1 time in total.
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Postby irishmum » Sat Jan 30, 2010 1:34 pm


My brother who visited me on Thursday from London told me that when he was being treated for blood cloths in first the US and later in London (he had two and was diagnosed with sticky blood) the doctors told him that he had an abnormal venous system near the venae cavae so much so that they commented on it in the British Medical journal. He does not have ms but there is a strong history of it in our family. So I too am afraid that when i get tested it will be like that and will be too complicated to treat like anther poster here on this is ms . and he has strawberry birthmarks all over his hands

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Postby irishmum » Sat Jan 30, 2010 5:47 pm


correction I should have said in the venae cavae near the heart
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Postby DippyD » Mon Feb 01, 2010 5:32 am

I have been quite startled by this post..
I have MS, and my son has a large brown birthmark on his hand.. (I have no visible birth marks).
Naturally, as there is a possible hereditary link with MS, the fact that he has this birthmark is now causing me alarm..
Is there someone i should see about this?..
I had no idea that birthmarks could be linked to CCSVI / MS....
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Postby catfreak » Mon Feb 01, 2010 2:02 pm

I had the Cyst next to my jugular vein, Dr Dake found this when he did my stent procedure. It was congenital.
I was born with Multiple Fistula of the Lungs. Basically AVM's in both my lungs. Had part of both lungs removed when I was 2. Then my son was diagnosed with an AVM on his left lung at age 25, he has since had 2 more surgeries to fix AVM's in both lungs. This was congenital. He has a huge purple birthmark on he back of his head, which I had forgotten about until he had to have his head shaved to remove a fatty tumor from the back of his skull about 10 days ago. He will be 30 this month.

Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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