Nose biopsy anyone?

[Georgie-girl]

I know lots of you suffer with various nasal problems and I'm wondering if any of you have had a nasal biopsy?

My vasculitis doctor sent me to see a consultant to get this done, and I stupidly thought it was a minor thing like the SFN skin biopsy that was done at the consultant appointment in his clinic, but no. It's a full scale operation apparently.

I can't tolerate general anaesthetics so it will be under a local and I'm told that's worse as it takes quite a few numbing injections in various places as they need to biopsy at least 3 areas from each nostril and high up through the bridge.

The consultant told me in detail about blood loss and recovery and pain etc, and I know I need to have it done to hopefully find something definitive, but I'm pooping myself.

Has anyone had one? Does anyone have any information, advice?

Thank you. X

[Hidden]

Hi Georgie girl,

It depends what they are taking the biopsies for. If it’s to rule ANCA associated Vasculitis in or out then the diagnostic yield can be quite low ( will need to check the figures ). Much also depends on the skill of the person doing the biopsy and the pathologist etc.

Will the results make a difference to your treatment as that’s the crucial question?

[Hidden in reply to Hidden]

These are the most recent ANCA associated Vasculitis guidelines I could find. Biopsies are discussed in statement 2. The research into biopsies dates from the 1990’s and it looks like inflammation is a much more common finding than disease specific features in nasal biopsies etc.

ard.bmj.com/content/annrheu...

As I said before it’s important to know and understand what will change, or not as a result of the biopsy. False negatives are common.

[Georgie-girl in reply to Hidden]

Hi Tynemouth and thank you. I believe it's for a couple of reasons. One is to rule in or out vasculitis and the other is to check general inflammatory, antibodies, disease, etc, basically a reason for my nasal problems. As I am still not definitively diagnosed, I am hoping for some clarity really. I'm not sure if it would change or make a difference to my treatment as my rheumatologist is treating me, but it's all the other doctors I see who doubt including the vasculitis doctor who insists I shouldn't be taking steroids and immune suppressants without a concrete diagnosis and does his best to get them stopped. I think I would like to know as well really if I could put a name to my condition. I have been treated for sjogrens for years but recently the "probable" diagnosis has been questioned. I have had 2 lip biopsies over the years, both were inconclusive and just showed chronic inflammation, and my ANA's are borderline. Guess I'm clutching at straws here but thinking I should perhaps take the chance.

Thank you so much for the link, it was really very helpful.

[Hidden]

Hi yes had done last year, due to location of biopsy I had no injection to numb the area. The surgeon said he would stop when the pain got too much and did, so I think stay calm and keep communication with your surgeon. Its not nice but sometimes neccesary, for after care ensure a good stock of over the counter pain killers and also avoid work if it involves heavy lifting etc allow the wound to heal, is my experience.

Regards

[Georgie-girl in reply to Hidden]

Thanks Rock. Did they find what they were looking for with your biopsy or was it all for nothing?

Staying calm I think is the issue for me as I am a bit of a scaredy cat. I hate all procedures.

[Hidden in reply to Georgie-girl]

Hey, was nothing in the end and the surgeon thought as much at the time but its good to check. I have started being more open about anxiety in such situations now and actually its helpful for everyone, the procedure will still hurt like hell but they will take you more seriously if they understand your scared and why so it will allow them to be prepared. Good luck, get someone else to drive u there and home, I forgot to mention previously.

Regards

[Georgie-girl in reply to Hidden]

Yes, you're right it is good to check just in case. You're right too being more open with anxiety. I wouldn't say anything like that to a doctor as they like to blame everything on anxiety, but to a surgeon doing a procedure, I think it's right to warn them so they know how to treat you.

[jane1964]

Hello I had one during a series of tests to try to find out what was wrong.I saw an ENT consultant first she had a look with a special flexible camera type instrument.That was in a clean office not an operating theatre she used a numbing/s decongestant spray, this was pretty ok I didn't really feel much.After this she decided to do a biopsy this had to be done by local anaesthetic in a full theatre awake like you they didn't want to anesthetize me I was scared too!The injections were uncomfortable they hurt as they went in a bit like a dental anaesthetic but more uncomfortable and more pressure.After that it was fine I didn't feel anything I did bleed a bit but could not feel it.Afterwards my nose felt blocked like I had a cold but I couldn't blow it which was uncomfortable for a couple of days and I had to use a cream for 4 weeks in all it was supposed to be two but it took longer too heal.My biopsy was too look for signs of vasculitis they didn't find any although I still am thought to have either vasculitis or sjogrens or mctd or a bit of all of these! I was very unwell at the time all this was done and desperate for an answer now I am on immunosuppressive treatment and feel so much better.So even though the results were negative I feel it was worthwhile.It's not nice but the doctors and nurses were very kind and reassuring and it's doable.I hope this helps Jane.

[Georgie-girl in reply to jane1964]

Thanks so much jane, that's really reassuring. I had a nasal camera thing as well which was done at an appointment in clinic office and I just assumed the biopsy would be done there too. The doctor looked at me like she couldn't believe me when I said this. Well how was I supposed to know?

I'm not too worried about not being able to blow my nose as I can't anyway so little difference there.

It's a shame they didn't find any signs of vasculitis with you. Tynemouth just said false negatives are quite common so I wonder if that was the case with you?

Anyway, you make it all sound relatively easy and not too much to be scared of so thank you for your reassurances. Now I just have to stop being such a baby.

[jane1964 in reply to Georgie-girl]

I think it may well have been a false negative I am lucky that my rheumatologist decided I needed treatment anyway and Azathioprine has made me feel so much better.My diagnosis isn't totally there but I think it is vasculitis of some type.Good luck with your biopsy.Jane.

[Georgie-girl in reply to jane1964]

Thank you and I'm glad you're being treated anyway.

[citygirl1234]

Hello Georgie-girl,

I had a sinus biopsy a couple of months ago under general anaesthetic, at the request of my vasculitis consultant. In my case, the sinus they wanted to biopsy was one of the ones in the cheek so my ENT consultant highly recommended that it be done under a general anaesthetic. My biopsy was done as part of FESS (Functional Endoscopic Sinus Surgery) where they essentially opened up the sinuses a bit at the same time, and it was a very straightforward half an hour day case procedure for me, and I had very little in the way of bleeding or swelling and only the mandatory two days off work afterwards. I didn’t find it that painful, but everyone is different and they will provide you with pain relief to make sure you are OK. It’s hard to gauge what your recovery will be like exactly until they actually do the procedure (as things can change from the last time you had a CT scan) but it is good that your ENT doctor has explained the risks. As Tynemouth mentioned, a lot of sinus / nasal biopsies do come back inconclusive so this is something to think about and I would ask your vasculitis consultant and / or ENT what they plan to do / how they are going to treat you if this happens.

When I was first told I needed to have a biopsy done I did ask if I could have it done under a local but my ENT said in my case they “really wouldn’t recommend it” and that getting it done under a general anaesthetic would make it a quicker and simpler procedure (and likely make it easier to recover) but it really depends on your situation and what exactly your ENT has planned. If you’re concerned about having a general anaesthetic is it possible to have a conversation with the pre op team or the anaesthetist who works with your ENT about it? I had a bad experience with a previous general anaesthetic and spoke to the anaesthetist about it before my biopsy and was able to avoid the same situation, but I know everyone is different so for you having the local instead of the general anaesthetic may be the lesser of the two evils.

I hope this helps.

[Georgie-girl]

Wow, that sounds like a much bigger procedure than mine. I'm glad it wasn't too painful though. Did they find what they were looking for with you or was it inconclusive? I hope you didn't go through all that for nothing.

I was told, like you, that a GA would be better but I react quite badly to them and cannot get over past experiences so they agreed I could have local.

Thank you very much for your response, it's very helpful and reassuring.

[citygirl1234]

It sounds like more work than it was! (FESS can be a lot of work but mine really wasn’t). The results of my biopsy only showed inflammation so it didn’t “confirm” vasculitis, but to be honest I was expecting it to. My ENT told me it was a long shot that they would find anything but rheumatology still wanted a biopsy anyway (as the already slim chances of getting a biopsy get even slimmer when you start treatment, and the BSR guidelines recommend always taking a biopsy if they can), so I don’t feel like it was a total waste of time but it took a while to organise.

It hasn’t made any difference to my treatment though, apart from delaying it a bit. I still have an ANCA vasculitis diagnosis, but as my vasculitis is at the milder end of the spectrum I don’t have to have cyclophosphamide or Rituximab infusions (which are the “go to” treatments for most people when they are first diagnosed with ANCA vasculitis).

I’m glad you found it reassuring and I hope yours goes similarly smoothly! At least you don’t have to fast if you have a local!

[Georgie-girl]

I totally agree. It might seem like a lot of fuss and a lot of pain for a chance you may get something definitive, but if you dont do it, you will never know if it could have clinched a firm diagnosis. It's a tough call but I'm at the stage where I'm willing to try anything now.

I'm so glad you don't have to take any of those nasty meds though. They can't be very pleasant. Thanks again city girl.