looking for help for my mother

[srwharton]

Hello I am looking for information to help my mother with an upcoming decision. Her most recent flare of Wegener's caused a perforated septum and slight deformity to the appearance of her nose. The ENT would like to go in and repair the perforation now that the flare is under control. The dilemma comes in where the dr can offer no information on wether or not this would be successful in a patient of my mother's health. She would love to be able to breath normally again, regain the shape of her nose, and not have to endure monthly treatments to clear the crusting from her nose but is unsure of her desire to risk infection, pain and recovery time on a procedure that may not work or may only be a temporary fix only to return to the same place in another short while. My mother has lived diagnosed for around 25 years and it is believed in retrospect that her first flare was over 30 yrs ago when she was pregnant with me. She recently celebrated her fiftieth birthday, a feat most of her original drs never believed attainable. We have all learned from this disease to plan, reasonably, for tomorrow but live for today. We are interested in any information you may have on if this procedure could improve her nasal troubles or if anyone knows of an ENT in the DC metro area that may have experience with wegener's patients. Thanks for any help.

Sarah

[Sangye]

I live in the DC suburbs, too! Your mom's best bet is at JHU. They're one of a handful of vasculitis centers in the world. She should meet with a JHU Wegs rheumatologist first. He'll then get her started with the JHU ENT who specializes in Wegs. The ENT will defer to him for all major decisions.

[andrew]

Hi Sarah
It's the right thing to do to wait until the flare is over and the disease is back under control. Other than that, the only advice I can offer is that Sangye gives good advice

[Doug]

Sarah~ I agree with Sangye, too. When you are that close to Johns Hopkins, it would be negligent not to get an informed opinion from the weggie specialists she mentions. My gut feeling is they will advise against it at this time.

Regardless, they are better able to decide what your mother's best options are than the ENT who wants to correct the WG-associated deformity: if there is insufficient blood supply in that part of her nose, she'll be right back to where she was, only with additional pain to deal with.

Keep in mind the damage to weggie bodies is vascular, specifically the small and medium sized vessels. It takes time for the body to repair the vascular system once it's attacked by WG.

[elephant]

That's why I had four sinus/maxillary surgeries, my disease was active and they kept going in there. Finally this fourth surgery worked, hopefully! I still have alot of damage to the sinus area. Need to wait till the disease is in remission or close to it. Again listen to Sangye she knows.

[Sangye]

The other reason why you'd want an expert's opinion before doing any surgery (nose or other) is to make a plan. For example, should your mom have pred before surgery to avoid a Wegs flare? What if the surgery induces a flare-- what will they do? Much better to have that plan in place ahead of time than wait for possible complications and then scramble around for a Wegs doc.

[jola57]

I had a deviated septum when I was 18 and had it repaired. I spent 10 days in the hospital with an infection (which I didn't know about but that is a whole new story) and my nose has been crooked aver since. I asked about having it reconstructed again but none of the plastic surgeons wanted to take it on. This is while I was young and healthy. Now that I am almost 53 and have Wegs the docs tell me to forget it. If the specialist feel they can do it go ahead but from what I remember it is not a comfortable operation or recovery, also one of the reasons the doc's don't want to do mine is the fear of cartlige reabsorption and infection leading to even more disformity. definitely get more than one expert opinion.

[cutecats2]

my moms nose has always ben hit .. when she was in a remission state it didnt do anything but everytime it came back her nose was involved everything .. it would be nice to have everything straightened out but keep in mind yep it will hit there .
yes we are doing the same thing my mom is 62 .. and well survived ehr last bought and it was a devistating one ..
take care