Unapproved Valves.......

[Marty]

Thank you, Billy

Thank you, Billy

Thank you , Billy for divulging private and very hurtful information about the cause of death of your beloved wife. There is a lot I don't know about this whole silzone business. Now I have been told by St. Jude people that over 32,000 silzone valves have been implanted and that to their knowledge there has been 7,8, or 9 (?) explants. I read that the explants were for "paravalvular leaks". Not specifically clots. They maintain that the the problem was in the silzone impregnated sewing ring. Now all mechanical valves have a finite % of clotting problems. One of the reasons St. Jude is popular at Inova Fairfax is the 20 year old bileaflet is made of pyrolytic carbon and they have reduced but not zero clotting complication. Other companies such as Medtronic, Carbomedics, et. al. also make good mechanical valves but they also have clotting complications , paravalvular leaks, etc. The science is not perfect. The most disturbing thing to me in your well phrased message was the profound lack of interest St Jude showed in checking the clotted valve. This angers me and I intend to speak to some one about it . I don't like corporate "cover ups". Billy I don't think you are on an unreasonable quest. I support you and hope that you prevail.

 

[Zipper]

CE

CE

Er..Uh..Janie...could you repeat that ?? LOL! Jus kiddin'

Confusion Everywhere sounded right to me..LOLFOF!!! Whew...quite a read..Thanks, Janie !!

Joan

 

[Billy]

Thanks again.........

Thanks again.........

Thank you Joan, Sylvia, Janie and Marty for your responses to my post. I value your continued help and support.

Marty.........I am aware that the main complication with the silzone valve was originally identified as paravalvular leakage. If you check the net thoroughly you will find several instances where thrombus formation was also mentioned as being a problem with this particular device.

I have compared results of several tests and these vary in their findings. Strangely I cannot find any results produced by St Jude - all tests appear to have been done by outsiders who were obviously more concerned than the manufacturers.

I know that you converse with the St Jude Company from time to time and you are welcome to comment to them on what I have told you. Of course what I have told you is only the tip of the iceberg. When one delves below the surface it is all so bizarre that it becomes stranger than fiction. Maybe we'll meet up some day and I'll share the rest with you.

 

[hensylee]

You are right, Billy. It's the 'below the surface' things we never hear. My brother is dealing with a health problem now that came about because of a medicine he was on for 1 1/2 yrs. He has Parkinson's as a result and other irreversible side effects. There is no way we can know these things up front.

 

[Scottie]

Billy

Billy

Billy ..I just like to add my support ...is there any way I can help ..should I write to my local MSP or MP ?....what would you like me to do ?
Take care
Scottie

 

[Billy]

Hey Scottie

Hey Scottie

Stick around with that support Scottie. I think I've got it figured short term but there will come a time when we'll need all the voices we can get our hands on.

I'll keep you updated on the general progress, on this thread and by e-mail, if it is confidential information. Glad to have you on board - rally any other troops you know, who would be interested in adding their support.

 

[Scottie]

You're the boss Billy !

You're the boss Billy !

awaiting instructions here Billy ...going to a British Heart Foundation meeting on Monday night so will look for some suppost there ..take care and keep in touch
Scottie