Curious findings of these Pioneers as they explore!!!!
Posted: Tue Oct 05, 2010 2:38 pm
These are just some interesting points I have picked up as I watch the researchers lecture describe their findings or read about them.
It sure does explain a lot of the reasons for MS to be variable.
I cannot remember who described this- it was either Simka or the Dr from Kuwait or maybe it was Sclafani but it was on a YouTube video recently describing their experiences to each other and to IRs I believe- the person was describing the variety of the causative lesions that they have encountered- - they all took turns describing what they had found, valves, webs, etc,
anyway- he described the lesion as "flap-like" and said it was like a garbage pail lid-
he said when he snaked the balloon catheter up it push the lid (flap) up and when he pulled back it fell down almost occluding the vein-
I was sort of awe- struck thinking of all these kinds of valves, and flaps, and anomalies- they seemed to be very varied- in both the locations, structure, etc.
If a flapping valve acts like a door------ and intermittently was flapped open and then flapped closed. This might explain how some symptoms could come and go. I
I was also struck by the wide variety of the location of the lesions and the number of varieties. In Dr Simka's most recent powerpoint about procedure safety he even had diagrams and numbers:
Lets see I think there were 330 people total 97 % had blockages
120 had 1 IJV affected
184 had 2 IJV affected
7 had 1 IJV AND the Azygos
10 had Both IJV AND Azygos
1 had 1IJV AND his Left Brachiocephalic vein
1 had 1IJV and his Brachiocephalic
1 had Azygos
THIS maybe why we see different degrees of disability and different amounts of accummulating iron and varying ages of onset and various rates of progression
For more please read Simka's Power Point
I find this all so fascinating. Also since the congenital venous malformations are so varied type and locations)the genes causing them would not be the same genes.
It sure does explain a lot of the reasons for MS to be variable.
I cannot remember who described this- it was either Simka or the Dr from Kuwait or maybe it was Sclafani but it was on a YouTube video recently describing their experiences to each other and to IRs I believe- the person was describing the variety of the causative lesions that they have encountered- - they all took turns describing what they had found, valves, webs, etc,
anyway- he described the lesion as "flap-like" and said it was like a garbage pail lid-
he said when he snaked the balloon catheter up it push the lid (flap) up and when he pulled back it fell down almost occluding the vein-
I was sort of awe- struck thinking of all these kinds of valves, and flaps, and anomalies- they seemed to be very varied- in both the locations, structure, etc.
If a flapping valve acts like a door------ and intermittently was flapped open and then flapped closed. This might explain how some symptoms could come and go. I
I was also struck by the wide variety of the location of the lesions and the number of varieties. In Dr Simka's most recent powerpoint about procedure safety he even had diagrams and numbers:
Lets see I think there were 330 people total 97 % had blockages
120 had 1 IJV affected
184 had 2 IJV affected
7 had 1 IJV AND the Azygos
10 had Both IJV AND Azygos
1 had 1IJV AND his Left Brachiocephalic vein
1 had 1IJV and his Brachiocephalic
1 had Azygos
THIS maybe why we see different degrees of disability and different amounts of accummulating iron and varying ages of onset and various rates of progression
For more please read Simka's Power Point
I find this all so fascinating. Also since the congenital venous malformations are so varied type and locations)the genes causing them would not be the same genes.