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Thread: Nose biopsy, I'm nervous!

  1. #11
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    Agree 100% with Sangye. If you are not looking for a diagnostic result or trying to determine the state of Wegener's activity there is only risk involved here and no benefit. Don't they do risk / benefit assessments at your hospital? They did this when it was proposed that I had ear grommets fitted last year and it resulted in the operation being stopped.
    Jack

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    Quote Originally Posted by pberggren1 View Post
    My ENT told me that he would not do any surgery on nose or sinuses unless it was absolutely neccessary for survival because and cutting in nose can cause the Wegs to flare.
    Have to agree with Phil's comments here. Before I had my DX for WG I was being seen by an ENT guy with regards to my deviated septum (see photo) 2 months after the operation to 'straighten' or clear the passageway and my first big attack with multiple syptoms started. I wonder if the operation let the WG 'out of the box' - bit like Pandora's Box.
    I'm no expert but I would have thought a rhinoscopy or perhaps a CT scan would be more appropiate given your already positive diagnosis.

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    When I was in the hospital they had arranged an ENT appointment for me after I got out. When I went to the ENT I asked them why exactly I was there, and they told me that I was scheduled for a nose biopsy, but they wouldn't do it because I was already diagnosed, so they thought it was unnecessary and also possibly could cause damage because of the drugs. These were two ENT doctors who work with WG patients and they refused to do the biopsy. I think you should double check why they are doing it and like Sangye says ask about risk to benefit ratio.

  4. #14
    Doug Guest

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    I'm amazed to come down on the side of my least favorite specialists, ENT doctors, but I agree with yours. Please present your rheumatologist with the two questions Sangye brings up. I have no doubt both doctors have your best interests in mind, but the rheumatologist has to bend to reason when there is no clear, apparent benefit to you, and some potentially serious dangers.

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    Sounds like the rheumy is going for the 'gold standard' and that's really not necessary in your case. You're 90 percent certain with a positive c-ANCA and clinic symptoms. I'd say look for biopsiabl material if he is already in there -- that's what my ENT did in my throat. But I wouldn't undergo a biopsy as a fishing expedition

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    Hi Malin, I'm waiting for a date to have my nose biopsy, it's being done under general. Just like your ENT mine didn't want to do it but the rheumy wanted it. In my case althrough i've had jiont pain mouth ulcers, lesions and a pos ANCA also nose bleed and tree episodes of when my nose wouldn't stop running also in febuary a hacking cough for over three weeks. the ENT said my nose didn't look to bad but the left sinus is full of musocal thickening this also shows on my cheek. What i don't get with these docters why they disagree perhaps someone on here can tell me.

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    My rheumy wants the biopsy done so she will know wether or not I've "got WG in my nose". I have had some sinus problems since this spring/summer but I think that was mostly down to having hayfever for the first time. Other than that I have sometimes get sinus pains when I have a headache, get a blocked and hurty nose/sinuses if I sleep in a hot stuffy room.

    I feel ok about having it even thought I'm a bit nervous about the actual procedure, I think if my ENT thought the risks were too big he wouldn't do it, he seems like a good ENT doc so I feel I can trust him. As far as my rheumy goes, she's good but sometimes I think she overreacts and wants to push for things that might not be neccesary. Like when she wanted to put me on cyclo instead of MTX because of a slightly high CRP/ESR level. :/

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    Yes thats why my rheumy wants it done to see if WG is in my nose, my rheumy didn't even increase my pred even through esr and crp were both at 50. I'm on 7.5 pred and plaquenil and he wants to increase the pred and start me on imuran if the biopsy is pos, but i want go to adenbrooks but i don't know if they will accept me till i get a pos biopsy i'm ringing them tomorrow.

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    Oh Malin. Good luck!!

    I still would've thought a CT scan could tell if Wegs was in your nose? Tho i dont know half has much about diagnostic tests as most people here.
    I wouldnt have anyone poking about in my nose unless it was absolutely necessary.

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    Quote Originally Posted by freakyschizogirl View Post
    Oh Malin. Good luck!!

    I still would've thought a CT scan could tell if Wegs was in your nose?
    Yea, so would I! :/ I've had a whole load of CT scans of both my nose and my ears and they have all come back clear as can be...
    Only reason I'm agreeing to having it done is because of the sinus problems I've had on and off since the spring, neither bloods or CT scans have showed anything unusual but in this case I feel I want to be 100% sure that its not WG playing tricks with me!

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