TOS / CTOS

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

TOS / CTOS

Postby frodo » Tue Jun 08, 2010 4:36 pm

I have got the email of Dr. Castillo in Madrid, Spain. I have written him. The test are 400 euro and the intervention will depend of the result of the test.

If somebody wants to write him, PM me for his email

Regards.
Last edited by frodo on Fri Jun 11, 2010 12:13 am, edited 1 time in total.
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Postby fernando » Tue Jun 08, 2010 5:14 pm

Hi Frodo

Just a question, does Dr Castillo knows about CCSVI?

Un saludo!
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Postby frodo » Wed Jun 09, 2010 2:32 am

fernando wrote:Hi Frodo

Just a question, does Dr Castillo knows about CCSVI?

Un saludo!


He knows about CCSVI and he thinks there can be a relationship.
I post you my question and his answer, in case you can read spanish.

> Puede una compresión en la base del cuello como la descrita en CTOS
> causar un reflujo en las venas como el descrito en CCSVI? o por el
> contrario serían problemas independientes?
Pueden ser dos sindromes conjuntos.
En la consulta en Madrid se pueden realizar las pruebas.
Un saludo
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Postby BooBear » Wed Jun 09, 2010 3:56 am

Interesting response from the doctor!

IRs and vascular surgeons have nothing to gain from the pharmas, so I do believe they are more open minded.
Three veins angioplastied.  One renewed life.  
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Postby whyRwehere » Wed Jun 09, 2010 5:50 am

I am going to try and have my husband tested, but the actual surgery is 10,000€ and I am afraid that is so out of our reach...it may as well be a million to us. Still, will try to see the doctor for his opinion...can just manage the 400€ plus travelling expenses.
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Postby fernando » Wed Jun 09, 2010 6:38 am

Interesante, gracias.
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Postby Nunzio » Wed Jun 09, 2010 8:50 am

Nunzio wrote:
Nunzio wrote:
Dilatation of the great vein of Galen secondary to obstruction to flow in the internal jugular veins in a patient with thoracic outlet syndrome (TOS) and migraine
James Douglas Collins1, Ernestina H. Saxton3, Theodore Q. Miller1, Samuel S. Ahn2, Hugh Gelabert2 and Alfred Carnes1

ABSTRACT

Costoclavicular compression of the bicuspid valves within the internal jugular vein and the veins of the neck and supraclavicular fossae results in venous congestion of cerebral dural sinuses secondary to increased intracranial pressures.

This a post I made in another tread; so there is a paper that shows that TOS can cause compression at the base of the Internal Jugular vein and create reflux in the brain with congestion in the dural sinuses
Abstact here: <shortened url>
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Postby nn98200 » Wed Jun 09, 2010 4:31 pm

Hello dear friends,

I know that Dr Castillo is the best doctor to go to regarding CTOS but for those of us who live in the US, could we at least be tested for CTOS locally? I came across this site www.atosa.org where they have a list of doctors experienced in CTOS in every state. What do you think?

Thank you all!
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Postby Cece » Wed Jun 09, 2010 7:23 pm

Does anyone know exactly what the difference between regular TOS and CTOS is? On the link posted above, there are some physical therapies listed...would any of these be of use for CTOS?
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Postby frodo » Wed Jun 09, 2010 11:36 pm

Nunzio wrote:Dilatation of the great vein of Galen secondary to obstruction to flow in the internal jugular veins in a patient with thoracic outlet syndrome (TOS) and migraine
James Douglas Collins1, Ernestina H. Saxton3, Theodore Q. Miller1, Samuel S. Ahn2, Hugh Gelabert2 and Alfred Carnes1

Great paper. Thank you. I also found in the wikipedia TOS article that they report a "venous TOS", in which neck muscles produce veins compresion. http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome
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Postby frodo » Thu Jun 10, 2010 11:56 pm

Cece wrote:Does anyone know exactly what the difference between regular TOS and CTOS is? On the link posted above, there are some physical therapies listed...would any of these be of use for CTOS?


I am just guessing, but it seems that normally venous TOS produces effects in arms. For example it is said:

For venous TOS, physical examination consists primarily of noting swelling in your arm and prominent veins seen just under the skin at the spot where your shoulder joins your chest.
http://www.vascularweb.org/vascularhealth/Pages/ThoracicOutletSyndrome.aspx

Maybe the only difference is where the problems appear.
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Postby frodo » Mon Jun 21, 2010 3:50 am

This can be interesting for people looking for venous TOS diagnosis. UCLA's radiologist, Dr. Collins, is able to diagnosize venous TOS via Magnetic Resonance Angiography (MRA)


http://www.rsirescue.com/articles/collins.htm
http://tosinfo.com/links/hcp/collins.html
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Postby CCSVIhusband » Tue Oct 12, 2010 6:13 am

I've been reading more on TOS recently ... just trying to learn more and more ... and this is starting to all tie together isn't it?

All these vascular problems with the same type of symptoms, the numbness, tingling, weakness all resulting from vascular issues.

I 'believe' that they all previously fell under the bucket of MS ... but still MS isn't a disease ... it's a result of something happening in the body. That something is something to do with the vascular system.

I'd often noticed in my wife, her blue (or whatever color you want to call it) hands and feet. Well, since she had her May-Thurner addressed during liberation ... her feet have been much better. Her hands still appear blue (or colored) from time to time. I wonder if this could be the TOS ... because nobody has really looked at the subclavian vein during liberation now have they? Could explain everyone's hand numbness ... or it could just be my wife's because it's not her whole hand, just her pinky and only from time to time, and never for days, just time to time.

But again, if that vascular area is slowed down, it could potentially slow down the rest.

When we go in for her follow-up later this year, we'll be sure to ask about it ...

Could just be after all this time, that vascular problems caused ALL of this ... and yet some people can't make these connections. SAD.
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