Talk:Retroperitoneal fibrosis

How

How was I supposed to know that the Lancet were going to publish a seminar on this 2 days after its creation? I'll update the page as necessary. JFW | T@lk 00:08, 25 January 2006 (UTC)

adding sections to Retroperitoneal Fibrosis

1st suggested addition: Support Groups There are a few on-line support groups for those with Retroperitoneal Fibrosis and/or their caregivers. By far the most active is:

http://health.groups.yahoo.com/group/Retroperitoneal_Fibrosis/ with about 500 members.

Others include a Face Book Page:

http://www.facebook.com/group.php?gid=60126946140&ref=search&sid=1439426532.232514352..1 found by joining Facebook and searching on Retroperitoneal Fibrosis,

http://retroperitonealfibrosis.com/

2nd suggested addition: What's next for the patient?

Retroperitoneal Fibrosis is not life threatening if treated correctly/competently, but it is chronic. It will never go away and it should be monitored forever (blood work & scans), but the symptoms should abate considerably with proper care.

However, just exactly what is "proper" care for a sufferer of Retroperitoneal Fibrosis has not been proven by any published trial results. There are a few basically standard protocols which seem to have been accepted by most practitioners with experience in the treatment of Retroperitoneal Fibrosis.

Since Retroperitoneal Fibrosis is an extremely rare disease and most Doctors only hear about it in Med school, and never see an actual patient very often it is up to the RF sufferer and/or their caregivers to be proactive in making sure that the proper care is given and that attention is given so as to minimize damage to kidney function.

As a patient, what's going to happen now.

You have RF. You will always have RF. It will NEVER go away. It may go into remission, but can always flare up again.

But you can manage it once the present symptoms are alleviated or at least reduced to a livable level. And some people seem to have complete remissions.

Management means regular tests:

Blood:

     Creatine to make sure that the ureters are not being constricted, 
     ESR, eGFR, & CRP to check for changes in internal inflammation. This would be an early warning that worse is on its way. And by early, sometimes that warning can be months ahead of other symptoms.

Scans:

     CT or MRI to follow changes in the Retroperitoneal Fibrosis mass which has been described as tough as wood, scar tissue, hardened, etc. MRIs are much safer for you in the long run as they do not involve X-Rays (radiation exposure), but MRIs may be a bit harder to interpret, but also may include much more detail than a CT scan.
     Renal scans of one kind or another depending on what the Retroperitoneal Fibrosis decides to attack next.

Possible treatments

Will be up to your Dr to explain. Steroids, surgery (stents are considered surgery), often both are all options.

If ureterolysis surgery is done it is very important that a complete/entire omental wrapping of the ureter is essential to protect against Retroperitoneal fibrotic tissue re-growing & again attaching & encasing ureters (& other organs/structures) particularly where less than a full wrap was undertaken. (If needed because there is not adequate omentum be aware of alternate "wrap material" eg. perinephric fat or other fat from within the abdomen.

suggested by Putnam Morgan, Connecticut, USA

Pmorgan7 (talk) 02:37, 9 April 2010 (UTC)

IgG4

doi:10.1097/BOR.0b013e3283412f7c IgG4 deposition seems to be an important mechanism. JFW | T@lk 13:46, 20 June 2011 (UTC)