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Looking for anyone who has or has had REFLUX

I wish to speak with other patients via email or otherwise, in regards to treatments they received for their VUR (Vesicoureteral Reflux I have a neurogenic bladder and used to reflux quite severely, causing kidney damage and frequent UTI's/  I now have 50% use of each kidney and must protect what i have.   The relfux was repaired with having my ureters re-implanted.  However,  before that procedure, I had POLYTEF DUPONT TEFLON paste injected in the the kidneys to act as a barrier for the (suppose to be one-way) valve.  This procedure worked for about two years.  After with the products is breaking up in to other areas o f the body.  I am interested to know if anyone else has had this procedure done, what their success rate was, and where the procedure was done.  PLEASE.

(ie: With vesicoureteral reflux, urine flows from the bladder, through the valves at the junction of the bladder and the ureter, back up the ureters and back into the kidneys. It is usually a congenital condition (present at birth) and occurs when one or both of the valve mechanisms are not working correctly .)

Polytef has since been pulled off the market.  I need patients or experts witnesses, doctors, nurses, etc.. Thanks.

Amy
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Avatar universal
In my opinion, "just take Cranberry pills" doesn't work with people who have kidney problems that are causing the UTI's. It's not just a simple infection. It's a physical problem or malformation causing it. I have duplex kidneys and ureters, with a ureterocele and reflux. The kidney on the right side has some scarring. I'm not sure how bad it is. I am on prophylactic Septra. I take it about every other day.
When I was a kid I was on antibiotics every day. I was able to get by in my teens on just the cranberries and vitamin C and such, but after I got married and was sexually active my UTI's flared up again and no amount of cranberry pills helped them. I had to go on antibiotics again.
  I haven't had any surgery yet, but I am seeing a urologist next week and I want to pursue surgery to see if I can finally correct the problem (I'm 28 and was born with this). My mom could have had me operated on as a kid, but she was scared to put a 3 year old under the knife. I don't blame her, I would have been too! Besides, maybe I'll have better results now that medical science is that much more advanced. Who knows.
I haven't heard of or had the Teflon procedure, but I do hope you can find the answers you are looking for!
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Avatar universal
All I can recommend is to take cranberry supplements. THey've been proven to work. I had a spinal cord injury five years ago and before I started taking the cranberry supplements I would get 5 UTIs a year. Get the kind that say "take 1 per day" and take at least two. Best of luck to you.
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