TOS question

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

TOS question

Postby CureIous » Thu May 08, 2014 8:05 pm

Haven't read up too much on it, but have a friend that was dx'd with a TOS variant involving subclavian vein compression from the costoclavicular ligament which lies between the first rib and clavicle. Myriad of CCSVI type symptoms and even into the spinal column. From what I've read it is correctable, just wondering what kind of specialist she should seek out. Ideas?
Thanks.
Mark
http://www.ncbi.nlm.nih.gov/m/pubmed/15768011/
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: TOS question

Postby pairOdime » Fri May 09, 2014 6:08 am

CureIous, see if this link is any help...Dr. Ahn is familiar with both TOS and CCSVI.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic22929.html?hilit=TOS

Regards,
pairOdime
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Re: TOS question

Postby frodo » Tue May 13, 2014 12:40 pm

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Re: TOS question

Postby drsclafani » Tue May 13, 2014 6:43 pm

CureIous wrote:Haven't read up too much on it, but have a friend that was dx'd with a TOS variant involving subclavian vein compression from the costoclavicular ligament which lies between the first rib and clavicle. Myriad of CCSVI type symptoms and even into the spinal column. From what I've read it is correctable, just wondering what kind of specialist she should seek out. Ideas?
Thanks.
Mark
http://www.ncbi.nlm.nih.gov/m/pubmed/15768011/


TOS is the least common of the inflow lesions of ccsvi. Unlike the outflow obstructions of the jugular veins, dural sinuses and azgos vein, the inflow lesions augment the blood flow within the obstructed cerebrospinal venous circulation. Nutcracker compression of the left renal vein, the most common of these disorders, is seen in about 65% of PwMS. When the left renal vein is obstructed, alternate pathways direct the venous outflow of the kidney through the cerebrospinal venous circulation. Similarly, but a much less common or significant inflow lesion, when the May Thurner syndrome obstructs the left iliac vein, some of the venous outflow of the leg is driven into the cerebrospinal venous circulation. Lastly, the least common is the thoracic outlet syndrome (TOS). Most TOS in compression of the nerves, not the vein. When the vein is obstructed, it usually does not cause CCSVI because the collaterals of the subclavian vein are the chest wall and superficial neck veins. It is possible that they can augment blood flow in the cerebrospinal venous circulation.

That being said, I might think that it is not the TOS causing these symptoms. The patient should have an evaluation of the usual venous suspects such as the internal jugular veins, azygos vein and the left renal vein.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: TOS question

Postby CureIous » Fri May 23, 2014 7:37 am

Thanks for the replies. I have plenty to munch on but no time to digest at all. On a 7 days 13 hour shifts with 4 hours of commute time. I.e. time is more valuable than money right now, plus they made me supervision. (Thanks Dr. Dake!).

Point being I am very very excited and anxious to help this lady, Dr. D. has provided some refs already, but just skimming her medical history is like whoa, girl, this ain't no simple gig here. She heard about CCSVI from me, so there's a blank slate there which is easier to work with sometimes, and she is very well read.

So the second she okays it I will post it, it is fascinating...And goes back to childhood with some serious aha"s!.

More to come.

Also I met this very kind young man who works at the tire place, he learned about my MS story, and mentioned his Mom who is 50 with a 25 year DX and still in RR phase but progressing. I implored him to investigate CCSVI. You could tell this kid loves his mama but is powerless. Just bringing a bit of hope, real non-pharmaceutical HOPE had him fighting back tears as I talked, just saying you never know where chit chat can lead. I'll try to follow up on that too in the future. Oh and the study with my guy over near me., More on that later.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: TOS question

Postby SophieandElle » Thu Jul 17, 2014 9:43 am

Hi--

Did your friend ever get the answers she needed re: TOS/CCSVI? I am going through this right now.

Would I request for my doctor to an ultrasound on the places Dr. Scalfani mentions here??? {I do not have MS}
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