Nasal Biopsy

[debhaz22]

Hi, Can I ask anyone who's had a nasal biopsy why they had it, what the recovery was like, and what the results showed? I went to Cleveland Clinic in Sept and was told I had "Atypical Wegener's". My ENT took 1 look in my nose 2 weeks ago and insisted we needed a biopsy done. After surgery he told me it looked like Wegener's. I'm not sure what that means, I was still pretty out of it. He said everything he touched in there just bled like crazy. Does any of this sound familiar to anyone? My nose is so painful now a week after surgery. I go back to the surgeon tomorrow for the results and am VERY nervous.
Thanks so much

[Dirty Don]

I'm not sure what they operated on...the nasal biopsy is usually a scrape or just a bit of tissue...don't understand why it's so painful after the surgery. As for the actual blood in the nose...yeah, sounds like WG...don't know that that is atypical as many of us have been dxd thru nasal biopsies. Some of us in the lungs too. Hang tough. Good luck at doc's.

[pberggren1]

Are you doing rinses Deb? What about nasal ointments like Secaris?

[debhaz22]

Hi Don,
I've had major nosebleeds, and they've cauterized twice before and he needed to cauterize it again, and also he said both sides of my nose needed to be biopsied (for whatever he saw I don't know), that's why the surgery was probably a little more involved. Just wondering if anyone else was experiencing the same type of thing.
Thanks!

[debhaz22]

Hi Phil,
Yes I've been 2 a day rinsing for quite some time. No, haven't been prescribed anything topical, does that help with the nosebleeds?
Thx

[pberggren1]

Are you crusting now Deb? Any bleeding?

[debhaz22]

Everything in there is pretty 'gross' from what I can see. Lots of crusting and black clots, no bleeding the past 5 days. Only been a week since surgery so maybe takes longer to heal? I see the surgeon tomorrow for biopsy results and hopefully he'll relieve this nose somehow!
Thx

[pberggren1]

Ya, any cutting inside the nose will take a long time to heal for sure. I suggest getting the Neil-Med nasal rinse bottle system from your pharmacy to rinse your nose morning and evening at the very least. Also, Secaris nasal ointment might help you as well.

[gilders]

Had nasal biopsy done approx 2 months ago. My specialist warned me before hand that nasal biopsy aren't always the most reliable biopsy for diagnosis of WG. I.e. you could have active WG but it might not show up in the biopsy. Lungs and kidney biopsies are the best, but are more invasive and if those organs aren't involved with your particular case of WG, then it obviously wouldn't show up any signs of the disease.
OK, back to how it was and how my nose has been since. Firstly the ENT guy looked up my nose and didn't like the look of all the bloody crusting. He then had a deeper look using a camera, this looked even worse. He then squirted my nose with some sort of numbing agent (which didn't numb it). He took a piece of "flesh" from my nose which was uncomfortable, but not really painful. He then decided he wanted a larger piece. He really pushed the "tool" deep into the flesh of my nose, pinced it and gave it one mighty yank. My nose absolutely poured with blood. I nearly passed out and had to lie down in a near by room. It took about half an hour for the bleeding to stop.
Since then the bleeding and crusting has been worse, but as this is occurring in both nostrils (not just the one where the biopsies were taken) I think it's more down to my active Wegener's rather than the biopsy not healing.
Still painful a week after? I think it was about a week after the biopsy that the area of the biopsy was the most painful part of my nose, so I'd say that your pain is not too unusual.

By the way, the sample was larger enough that a positive relapse was confirmed.

Atypical wegener's to me would suggest it is not Wegener's, but then he went on to say it looks like Wegener's??
I think you need to get some clarification from him tomorrow.

[gilders]

Last post was meant to read 2 MONTHS ago not weeks.

[annekat]

My nasal biopsy wasn't as traumatic as yours.... not exactly comfortable or painless, but right in the ENT's examining room chair with a numbing agent, and didn't take long, nor was there really any recovery time that I remember. If I understood correctly, the biopsy he took was actually a scraping of the bone of my septum, where there was a small hole where it had been eaten away. He may have taken a tissue sample from the non-bony part, too, I don't know; there was some bleeding but not a lot. The results were conclusive for WG, although it was already fairly obvious, since I had a saddle nose. A CT scan had shown lung involvement, but no biopsy needed to be done there since the nasal one was positive.

[Alysia]

Hi Deb,
I am sorry for your pains :hug2:
I had nasal biopsy twice. I was bleeding after it for about 2 days, and it was painful. the results, twice, were false negative. but maybe they didn't take enough. maybe yours is more bleeding because thet take enough to get to the right results.
I must say that in the hospital where I did the biopsy, the ENT docs never saw any weggie but me, so maybe they didn't know how to take the biopsy.
please update us. I hope things will get better soon for you.

[mishb]

Hi Deb,

My nasal biopsy was uneventful.
I was admitted to day surgery and the biopsy, a couple of square pieces of tissue, was taken from each nostril.

When I woke up, my nose was packed with wadding that needed to stay in for a week.
There was a bit of bleeding coming through the packing but it stopped after about ten minutes and then they took some of the packing out and re packed it.

I did not have any pain at all.
The only thing that I thought was 'painful' was the fact that I couldn't lie down for the first two nights - they told me I had to sleep sitting up.
I also couldn't eat or drink anything that would produce steam or have a hot shower, for the first two days.

I'm sorry that yours has turned out the way it has, but hopefully it will be better soon.

Take care

[debhaz22]

Hi Alysia,
Thanks for responding. How were you finally diagnosed with WG? It seems I'm hearing that these nasal biopsies are not very accurate in diagnosing?
Thank you

[annekat]

Michelle, your nasal biopsy sounds like a royal pain in the you-know-what. I'm seeing here that I got off very easy with mine, although I know I've read on here of others who've had easy ones. And I got diagnosed, although my saddle nose made it sort of a foregone conclusion, and if it had been negative, wonder if I would have been dx-ed anyway, given the nose and lung CT.

Deb, I don't know the reasons why nasal biopsies are sometimes inconclusive, but am thinking the nasal tissues are so convoluted and hard to get at, and they'd have to get just the right piece of tissue that had the granulomas or other evidence of Wegener's in it. Just a guess. I would think in a case where it is really a "mess" in there, it would be easier to get a reliable sample.

In any case, I'm sorry for those of you who had either a traumatic or inconclusive biopsy, or one in which you had to sleep upright for two days and walk around with packing in your nose! I wish better for anyone still needing to undergo this procedure.

[Alysia]

Hi Alysia,
Thanks for responding. How were you finally diagnosed with WG? It seems I'm hearing that these nasal biopsies are not very accurate in diagnosing?
Thank you

Hi Deb,
I had more symptoms of WG before, during and after the biopsies, starting from inflamation in my lungs (almost killed me, unresponsive to antybiotics, pred cleared it) continue to nose and ears infections and then joints, blood tests showing indications of wg (anemia, c-anca and pr-3 positive, others) etc. I went to a lot of docs. wg is rare in my area. finally the doc I stayed with, made "case conference" about me, in the hospital in which he is a manager of reumatology department. he invited some experts to the case conference and they were checking all the details and decided "formally" that it is wg.