Retroperitoneal Fibrosis              (Ormond's Disease)       

Sandy

My husband was diagnosed with RPF May 2009. He was experiencing severe back pain for a couple of months (thought a pulled muscle) before seeing his doctor. Was sent for CAT scan and was in surgery to have stint placed the same day. Next day surgery to biopsy what they thought was cancer. Relieved it was RPF ....a year and a half later frustrated with lack of info and what to do next. One doctor advised Mayo Clinic. Anyone gone this route?

szavislak@fuse.net

Michelle Bradford

My Name is Michelle and my husband has been diagnosed with RPF earlier this year after surgery to free his urita. and being diagnosed prior to this with cancer.  Living in the UK we have not been able to find anyone that can really help him.  he is in so much pain i feel that the effects are too much for a person to deal with.
Its so hard to watch someone you love suffer in this way.
Email address:

michelle.bradford1@ntlworld.com

Wilma Jones

I am interested in Emailing others with RPF, I have recently been diagnosed and am confused about some aspects of this disease.
Email address:
wepjones@comcast.net

Michele McBride

I am 51 years old and have just been diagnosed with RPF.  I have double stents and will be undergoing surgery next week.  The information on the net is very frustrating, I feel like I'm in a loop.  I wanted my Urologist to cut it all out, and he gave me a stare, said no, it's too entangled.  I'm so very confused.  Please email me with any enlightenment, I will welcome all of your input.  Thank you....
Email address:
mmcbride12@triad.rr.com

Joan Myers
Florida

Hi, my name is Joan Myers.  I was diagnosed last Sept. and have had a rough time.  After being misdiagnosed for three yrs., I went into renal failure and have had Nephrostomy tubes and stints put in.  In Dec. I had surgery for the ureters done by a doctor at the University of Miami and since have only the stints in.  I just want to know what to expect in the coming years.  I am almost 57 years old and would like to know what the future holds.  Thanks for listening as there really isn't any information on the Internet.
Email address:
Diggy86@aol.com

Michelle Q.

My mother  (65 years old) was recently diagnosed with idiopathic RPF.  She had her kidney removed 3 weeks ago due to this disease.  The urologist she is seeing knows very little about this and how to manage it.  He sugested that she see a rheumatologist.  I'm running into the same thing here.  Most of them don't know a lot or anything about this.  We live in Southern New Jersey and have been seeing docs located at Jefferson Hospital.

I'm scared to death, because she is in a lpainful she can hardly walk.  They're not sure if this is due to the RPF or stenosis (which she has as well).  Any help or info anyone can give me would be GREATLY appreciated!!!!
Email address:
mjq99@comcast.net

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