Nose biopsy, I'm nervous!

[elephant]

Eileen don't do it, I agree.

[Jack]

Biopsies are made for all sorts of reasons apart from the initial diagnosis of Wegener's so you must have an explanation of why it is being done and how you will benefit. You will then be in the best position to make a decision. I could never advise you at third hand!

[Sangye]

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.

If your ENT says there's enough evidence but your other doc(s) disagree, you should insist that they "talk amongst themselves" and consider how a biopsy will change anything. If it's (+) what happens? If it's (-) what happens? If the answer is the same for both questions, then there is no justification for a biopsy.

[malin]

You sure brought down the avalanche with this one!

Haha it sure seems like it!

Well, I'm going to speak with my ENT doc before the biopsy and see what he says.
I think I'll probably have the biopsy though, I've been flaring a bit and had the sinus problems on/off since this spring and even though rheumy was talking about chaning my meds, last time I saw her she said she would refer me to Addenbrookes before she did anything like that, so I suppose a biopsy to rule out sinus problems would make it clear to her that I don't need any changes to my meds. And IF by chance the biopsy did come back positive, I know I'll be refered to Addenbrookes in a flash.

I also think she might up some meds to help protect agains any possible infections after the biopsy, going to speak with here on Wednesday to see about that.

[Sangye]

If it were me, I'd skip the biopsy and get to Addenbrookes. Your rheumy is out of her league.

[pberggren1]

If it were me, I'd skip the biopsy and get to Addenbrookes. Your rheumy is out of her league.

Malin, I have to agree with Sangye 100%.

Please do not get the biopsy. You will regret it for the rest of your life. I guarantee it.

I had an unneccessary nose biopsy done on June 2 of this year and I am sure that is what is causing my nose pain right now. My new ENT said it was definitely not neccessary and could cause the Wegs to flare again.

SO PLEASE MALIN DO NOT GET IT DONE!!!!!!

[JanW]

I go to one of the top ENTs for wegs in the world.

There is no doubt that he would tell you that the biopsy is 100 percent gold standard and will prove beyond a shadow of a doubt that you have wegeners.

However, most of the time when he goes in (and keep in mind he is only doing surgery because there is already a problem, not for the biopsy alone) he can't get enough good tissue for a biopsy.

He took a bunch of scar tissue from my throat (I had surgery on my windpipe) and nada, zip, zilch, nothing.

If you have a positive c-ANCA, many clinicians (primarily rheumys or nephrologists) will dx you wgs. They will run that c-ANCA with a P3 and get a result they can live with and treat.

I can't speak at all to the physical affects of the surgery, but from where I sit I would definitely ask a lot of questions if this is merely going to make your diagnosis official. However, I say "from where I sit" meaning there may be complexities about your case I know nothing about. I can imagine there's a lot of pressure if your primary physician is trying to force you into having this surgery.

[jola57]

Don't Get The Biopsy. As JanW's bit above, now the diagnosis can be made without invasive techniques. My own poor rheumy was out of his league and ordered a sural nerve biopsy, which he would not do now. My neurologist friend told me not to do this, so I had a muscle biopsy, which was inconclusive. I relented and had the nerve biopsy and now have no feeling in part of my left foot. If I was asked now, that I know so much more about Wegs. I would have never consented to the procedure. Wegs is Wegs no matter where it is and its treated the same way.

[eileenv]

Thanks Sam, Well thats the piont it is not confirmed anywhere else and because i had a sinus fpromleminflamation was high ie my hans are swollen and are quite weak so he want to up the pred and start me on imuran. Anyway Geoff has left me Addenbrooks phone numbers so i will phone them now!! Thank you Geoff, oh and i couldn't get my photo on here, anyone any ideas?

[Jack]

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