Nose biopsy, I'm nervous!

[Jack]

What the hell difference does it make where it is detected? If you have Wegener's and you have nose symptoms that do not respond to antibiotics, then you have Wegener's in the nose. but so what? There is no different treatment for this than if it were to present anywhere else. It is kidneys, heart and lungs that are the major risks even though the sinus problems can be very unpleasant. I just don't see the purpose in seeking out this information at your risk.

[freakyschizogirl]

I agree, if its in your nose or not it will get treated. No need to cut up your nose to find out.

I'm so protective of my nose that i wouldnt let em cut it again.

[Sangye]

What the hell difference does it make where it is detected? If you have Wegener's and you have nose symptoms that do not respond to antibiotics, then you have Wegener's in the nose. but so what? There is no different treatment for this than if it were to present anywhere else. It is kidneys, heart and lungs that are the major risks even though the sinus problems can be very unpleasant. I just don't see the purpose in seeking out this information at your risk.

Exactly. Malin, I think your rheumy is totally lost treating you. A visual exam is sufficient in most cases and a CT is called for if a more detailed image is required. This doc's suggestions are outside the standard of care and are irresponsible. The rheumy should oversee your case, but each specialist should make the decisions regarding diagnostic procedures. I can't imagine my Wegs rheumy insisting that my Wegs ENT do a biopsy (or any procedure).

A biopsy carries risks. You could react to the anaesthetic, you could have a non-healing wound or acquire an infection, etc.... And it is always a possibility that any surgical intervention can trigger a Wegs flare or worsen active disease. It happens all the time.

[marta]

That's what I was thinking Jack when I read about the Wegs in the nose. Does it really make a difference where it is - isn't the treatment for WG the same all around? Maybe a little too keen for no apparent benefit in the end.

[JanW]

My ENT says that if you are having sinus problems AND you have diagnosed WG, you always go there first in terms of thinking that the WG is the problem. Same with unexplainable fatigue. Same with almost any physical symptom you can imagine, actually.

Your treatment won't be different if your doc is able to see with WG in the biopsy. And, it's tricky to do, AND you often get nothing.

[freakyschizogirl]

Exactly, my first biopsy was negative.

Save your poor little nose!!

[elephant]

I agree with all you guys. The ENT really has no business going in there, like everyone said. You have a right to cancel surgery and let your Rheumy know that you need to think about this. Look into getting a second opinion from a Weg spec.
I know all of this is over whelming. We just want the best for you, so here we are giving you our advice.

[Jack]

You sure brought down the avalanche with this one!

Please don't be overwhelmed by the response, it is just that we don't want you to be subjected to something that you are already apprehensive about when there may not be a need. It could be that by the wonders of the internet, we are all missing something and the biopsy is just what you require, but you need to make sure first. Question everything and don't expect the doctors to always make the right decisions. Very often they don't so you need to check for yourself and challenge them if things don't make sense.

Wishing you well,
Jack.

[eileenv]

Jack,Sangye and Jan do you think i should have the biopsy i am on the waiting list the ent didn't want to do it said there was enough evidence already for a diagnoses of wegs.

[freakyschizogirl]

the only reason i had the biopsy was because my wegs is localised there. If yours is spread and they have enough evidence Eileen dont so it!