Doctor didn't do Biopsy

[maria garcia]

We went to see the ENT. today and he was sop pose to do a Biopsy of my daughters septum. I was sure he would do it because the allergy medication has not relieved her stuffiness and has made her nose bleed. The plan was to try the medication and come back in a month for a biopsy if the medication didn't work. Well the ENT. said he didn't feel enough tissue would be able to be removed so we would not get a correct biopsy. I begged him! I even had gotten the authorization for the biopsy. He said he could do it during our last appointment and today he changed his mine and said that to remove enough tissue she would have to be under. I was so disappointed. He did say the inflammation is not severe where he would confirm wegener's. That most of the time you can tell when Wegener's has affected the nose by looking in there nose and the inflammation being so severe, and hers doesn't look that way. It made me feel better to know the inflammation is not severe but im disappointed from the doctors decision.

[Chris G]

I think his reasoning for not doing the biopsy is sound. If there isn't clearly visible inflammation (or granulomas) that he can go after, they basically have to take random samples of tissue, hoping to find one that will show something. This is the same thing my ENT told me, as I did not have tissue which was clearly indicative of wg, at my second meeting with him (although I did at the 1st meeting). He said he would have to do biopsies under general anesthetic, as he would have to take many large pieces, in hopes of finding something conclusive. I refused, as even with confirmed wg, sinus biopsies can be falsely negative.

Her nose bleeds are concerning though. Allergy meds don't make your nose bleed. The only time in my life I've ever had nose bleeds is with active wg flares.

[pberggren1]

I have had a few ENTs say that if they do not see granulomas in the nose then it is basically pointless to do a biopsy and might cause more inflamation and Wegs to act up, if it is Wegs.

[Sangye]

Maria, I understand your frustration but I agree with the others that your daughter's doctor made the right decision.

[mishb]

Maria, I agree that your ENT has made the right call.

I had mine done in February under a general. My ENT said that he had to go too far up and wanted to take a few samples and that not only would it
be too difficult to do in his office but also to hard for me to sit still long enough for him to get what he needed.
It took about 20 minutes (after about 5 hours of waiting for a theatre to become free) but once done, this is when I had my WG confirmed with a positive biopsy.
It did not hurt at all but was just a little awkward for a few days in not being able to lie down in bed or even be able to drink or eat anything steaming hot.
I personally think that it was the best choice I made to have it done.

Good luck to your daughter and I hope they sort things out soon.

[JanW]

Maria - really your ENT made the right call. There are many of us here who, while we have not had the 'gold standard' dx tool of a biopsy, have had wegs confirmed through a combination of symptoms and blood work. I had severe scarring in my throat, and even while under for surgery to open it, the doc removed large pieces of tissue, and found nothing. This is not uncommon.

[Jack]

I have to agree with everyone else, but would add that no operation is risk free. I had a follow up nasal biopsy after initial treatment that went wrong due to the mess made by Wegener's and I had to spend several days in hospital.