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How can I recover from retroperitoneal fibrosis?

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General Surgeon
Practicing since : 1980
Answered : 2130 Questions
age 79 4 foot nine inches diagnosed with non maliganant retroperitoneal fibrosis...severe on going pain in lower left and right abdomine recheck showed insignificant changes after 3 months...doc only increases pain meds and states there is no treatment for this disease I need a specialist in this field. I live in upstate central newyork I have lost over 60 lbs since january
Posted Wed, 2 May 2012 in Urinary and Bladder Problems
Follow-up: How can I recover from retroperitoneal fibrosis? 5 minutes later
I am constantly nauseated what treatment is avaiable other than pain management?
Answered by Dr. Rajinder Bajoria 8 hours later

     It is a rare disease ,in which fibrous tissues are formed in the retro peritoneal space, a space where kidneys,ureters ,pancreas, aorta,adrenal glands ,IVC .Exact cause is not known of this disease .As fibrosis progresses it cause obstructive symptoms of structure lying in the retro peritoneal space.It can only be diagnosed by MRI/CT abdomen .Exact location& extent of disease can also be known after CT/MRI abdomen.FNAC may help confirm diagnosis in some cases ,but it is routinely not done.As it can be both malignant and non malignant form.It is good In your case it is non malignant .Pain & obstructive uropathy ,DVT,swelling of limbs & some time herniation's are the main sign & symptoms .Generally treatment is symptomatic and with steroids .Tamoxifen has also been tried with some success .you must consult some multi specialty hospital,only these people attend & treat such cases l.Some times even surgery may be required.

Hope I have answered your query, I will be available to answer your follow up queries, Wish you Good Health and trouble free speedy recovery.

Above answer was peer-reviewed by
Follow-up: How can I recover from retroperitoneal fibrosis? 25 hours later
Can you refer me to a doctor that specializes in this close to where we reside...Little Falls NY 0000
Answered by Dr. Rajinder Bajoria 1 hour later

The aims of management of non malignant retroperitoneal fibrosis are to preserve renal function, to prevent other organ involvement, and to relieve symptoms. You have to search good doctor dealing in such diseases like retro-peritoneal masses or tumor in good multi specialty health institution which has following Urologist / Nephrologist, Pain and Palliative care, Psychotherapy under one roof, where you reside or close to you residence.

The natural history of retroperitoneal fibrosis (RPF) has not been clearly established. However, the outcome of nonmalignant retroperitoneal fibrosis is generally good.

I am not sure of the geography of your area to refer. Please search the local health pages.

Hope I have answered your question well to your satisfaction. Wish you speedy complete recovery at the earliest.
Above answer was peer-reviewed by
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