Inconclusive biopsy

[dskizs]

Had a nasal biopsy and after this horrible experience it came back inconclusive. They want to do it again. Anyone experience is?

[tintinrob]

Hi! I had a nasal biopsy and I know what it feels like. I wouldn't want to have another one in a hurry, however... I found it very painful when they did it, I recall they had a couple of nurses to hold me still so they could do it even with an anaesthetic spray up my nose (tasted bitter as hell) and it hurt for a while afterwards but paracetomol and codeine helped a lot. I wasn't too nervous about it at the time as I was busy feeling very ill, but it's just a natural reaction to jerk away from whatever they're doing up your nose! Mine was used to help diagnose my Churg Strauss vasculitis, apparently my biopsy showed up lots of eosinophils around the blood vesels - 'extravasation of eosinophils'. If I was in your place I would have a talk with the consultant if you can get hold of him/her to see why the first biopsy was 'inconclusive' - did the lab balls it up? not enough eosinophils? and ask what they are testing for, exactly. Not something to do lightly but I think maybe worth it if it gets to the bottom of your condition. Thing is with the blood test, your blood counts can go haywire due to other things - lurking infections I suppose - but the nasty nasal test is more definitive re a long term vasculitis. Maybe submit to it if the docs have a good reason for it?

I really hope things turn around for you soon!

Rob.

[AndrewT]

Dear dskizs,

If I were you, which of cause I'm not!, I would have the test done again-vasculitis is notoriously difficult to 'pin down'. I do hope, for your sake, that it ISN'T vasculitis; just a horrible, but treatable, infection. Not that I'm wishing you a hard time, you understand, just hoping you don't have vasculitis.

In any event I wish you all the best, please do let me, us all, know how you get on, will you?

AndrewT

[Katie18]

i have churg strauss and my biopsy in my leg was conclusive. my consultant decided she was sure enough it was css without putting me through it again. for you i suppose it depends whatelse they can look at-?

[prudence]

Hi I had two done 6years ago both came back inconclusive for Wegeners . I was given an anaesthetic on both occasions so I knew nothing about it. It was only when I flared again last year that its been verified I have Wegners . I also had a kidney and liver biopsy and a lumber puncture 6years ago I had them all baffled as nothing showed up and I was very ill , but this time I had different symptoms just to keep them on their toes !!!

[suffolkgirl]

I've had two nasal biopsies, both under general anaesthetic. After the first one I was considerably bruised and sore, but it did prove I had WG. After the second I was pleasantly surprised that I had very little discomfort, and learned that the cyclo had done it's job. Admittedly the two biopsies were carried out by different surgeons at different hospitals. After the first experience I was very apprehensive about the second, but I would not be so worried again, provided it was carried out at the same hospital as the second one.

[John_Mills Volunteer]

I've had a lung biopsy but fortunately never experienced a nasal biopsy, it certainly doesn't sound very pleasant. But iIt can be of immense help in confirming WG - demonstrating the characteristic granulomatous tissue - or CSS - with a combination of granulomatous tissue and eosinophilic "extravasions" Infiltrations.. For an accurate result all biopsies require that the right bit of tissue should be excised - not as easy as it sounds. The same applies to kidney biopsies - very helpful and informative - if you get the bit that's affected.

[dskizs]

Very helpful. I think for my sanity I will submit to another one under different circumstances. I am in Germany and this site is the only one I have been able to find answers for what is going on. I personally think it was the doctor I was sent to that messed up. Not that I want this disease but I want answers. I really think he had never done it before. My lung doctor said he would like me to go to Karlsruhe hospital to have a proper one. So I suppose in November I will go. Couple of questions. I am not sure how to use this site very good so will continue on this page. What is drop foot? Does V affect cholesterol ? I have had the strangest sensations around my knees like wearing knee socks and wake at night to stretch my legs and point my toes. What about the ANCA scores. I am told mine vary from a 1:600 to 1:800. I was told these are the scores that V people have when on meds. Since 3 doctors say I don't have V and to wait for symptoms I am trying to attend to various changes and sensations. Any response would be helpful. If I have V I want to be proactive and not wait for deterioration of lungs and kidneys. Thank everyone for taking the time to read and support me.