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Thread: Possible GPA - nasal deformity

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    Default Possible GPA - nasal deformity

    F1D18979-35DE-49B1-8423-A1F573CB0E4C.jpg076AF30C-EBEB-40D3-96B2-0CDA444DE712.jpg
    Hi all, I’m currently having investigations done for GPA after experiencing scabbing on my septum for many years (probably 8-10 years). No other symptoms in that time, no fatigue, neuropathy etc. I started having periods of lightheadedness/imbalance in August, along with palpitations and weird heavy head feelings. I went to the doctor and she prescribed naseptin which got the scabbing under control. However, my nasal breathing has become a problem for me and although I’ve always had a ever so slight dip in my nose on one side, I feel like this has got worse. Does this look like anything that anyone has experienced? The dip has also caused one nostril to look smaller than the other. It’s not so noticeable from a fully side profile.
    Last edited by Rae82; 02-28-2021 at 05:26 AM.

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    Default Re: Possible GPA - nasal deformity

    Hi Rae,

    I donít have any experience with saddle nose deformity, but @annekat and @Alysia do. Hope they chime in soon.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Possible GPA - nasal deformity

    Thanks Pete.

    Just to add, when I say I’ve always had a slight dip, it’s probably only for the last 9 or so years.

    I also currently have a strange feeling of pressure over the opposite nasal valve/mid vault area and I’m worried that this side is also going to start to collapse.

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    Default Re: Possible GPA - nasal deformity

    Quote Originally Posted by Pete View Post
    Hi Rae,

    I donít have any experience with saddle nose deformity, but @annekat and @Alysia do. Hope they chime in soon.
    Hello Rae and welcome to the forum.
    Sorry it took my a while to answer.

    Your nose doesn't look like a saddle nose.

    Do you have any other symptoms ? Like joints pains, gums bleedings, rash, fatigue, ears pains. Were your nasal scabs bleeding ? Do you still have them ?

    My saddle nose is the result of couple of years of nose bleedings and scabbing. The nose bridge has collapsed. It was while I tried meds which didnt work for me.

    At least I had enough nose to waste
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
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    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
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    Default Re: Possible GPA - nasal deformity

    I'm no doctor and no expert but I have seen a lot of people with saddle nose in person and this doesn't look like it. It looks more like deviated septum - which is what I myself have. It can lead to the problems you describe too. Mine has not caused me problems so I never did anything about it. I know we all take our looks differently but myself having a very mild difference like you think it just adds a bit of character. Like a beauty mark or something. That might not 'work ' for you but totally works for me.

    I have what I think is a bit of a funny story about it that is also touching. i was hospitalized many years ago for I don't remember what and a doctor came through with a group of students to 'check out the Wegener's patient' . The medical students were all quite young. The doctor asked me a few questions about Wegener's and right before leaving points to my nose and said
    "it is also common to see this kind of disfigurement with Wegener's Disease" . And then they left.

    I was a bit shocked- mostly because I knew my 'disfigurement' was in fact NOT from Wegener's and in fact doesn't LOOK like saddle nose. There is actually a good chance it was from one of the times I broke it as an active kid and it set back crooked. Secondly , I was in a very small way put off being called 'disfigured' when I myself totally don't see it that way and no one in my whole life has ever even commented on it- untill this doc.

    So, the group left and seconds later a young Korean student back and earnestly said to me "I"m sorry she said that to you." I said, Thank you
    I thought "There is going to be a great doctor some day " I was very touched by this kindness.

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    Default Re: Possible GPA - nasal deformity

    Quote Originally Posted by Alysia View Post
    Hello Rae and welcome to the forum.
    Sorry it took my a while to answer.

    Your nose doesn't look like a saddle nose.

    Do you have any other symptoms ? Like joints pains, gums bleedings, rash, fatigue, ears pains. Were your nasal scabs bleeding ? Do you still have them ?

    My saddle nose is the result of couple of years of nose bleedings and scabbing. The nose bridge has collapsed. It was while I tried meds which didnt work for me.

    At least I had enough nose to waste
    Thank you for your reply. I don’t have any other symptoms that would lead me to think I have GPA apart from night sweats. I also have had pretty much constant muscular type pain in my left trapezius shoulder area for the last 6 months. I think this is due to the breathing problems I’m having.

    I have had blood tests for vasculitis - ANCA, PR3, MRP - all negative. I’ve also had my ESR and C-reactive protein tested several times over the last 6 months and they’ve never been remotely raised.

    My main problem at the moment is my breathing. I feel like my nose is collapsing on the right and like my nostrils are not coordinated when taking a breath. My automatic breathing has stopped and I am manually breathing constantly because my breathing just feels so wrong. My nose whistles on exhale even though I don’t have a perforation. One ENT said it was valve noise. It’s torturous.

    I’m having to take medication to sleep because I was jolting awake after 20-30 minutes and then my breathing would go back to me having to control it and I wouldn’t get any more sleep. My GP has tried to say it’s anxiety but I know my body and I know my nasal breathing is not right. I am never short of breath, I just have to constantly concentrate to breathe.

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    Default Re: Possible GPA - nasal deformity

    Quote Originally Posted by me2 View Post
    I'm no doctor and no expert but I have seen a lot of people with saddle nose in person and this doesn't look like it. It looks more like deviated septum - which is what I myself have. It can lead to the problems you describe too. Mine has not caused me problems so I never did anything about it. I know we all take our looks differently but myself having a very mild difference like you think it just adds a bit of character. Like a beauty mark or something. That might not 'work ' for you but totally works for me.

    I have what I think is a bit of a funny story about it that is also touching. i was hospitalized many years ago for I don't remember what and a doctor came through with a group of students to 'check out the Wegener's patient' . The medical students were all quite young. The doctor asked me a few questions about Wegener's and right before leaving points to my nose and said
    "it is also common to see this kind of disfigurement with Wegener's Disease" . And then they left.

    I was a bit shocked- mostly because I knew my 'disfigurement' was in fact NOT from Wegener's and in fact doesn't LOOK like saddle nose. There is actually a good chance it was from one of the times I broke it as an active kid and it set back crooked. Secondly , I was in a very small way put off being called 'disfigured' when I myself totally don't see it that way and no one in my whole life has ever even commented on it- untill this doc.

    So, the group left and seconds later a young Korean student back and earnestly said to me "I"m sorry she said that to you." I said, Thank you
    I thought "There is going to be a great doctor some day " I was very touched by this kindness.
    Gosh, what a unthoughtful thing to say to someone. I agree that differences add character and my nose wouldn’t bother me at all if I wasn’t struggling with my breathing. It actually feels like the right side is collapsing and causing me to have horrible breathing problems. I feel like I breathe into my ear on the right side and my nostrils feel uncoordinated like I cant breathe right up both at the same time. It’s caused my breathing to become manual and I have to medicate to sleep. I seem to spend a long time in REM sleep where I’m totally aware of my dreams, almost like I’m right on the edge of being awake and asleep. It’s awful.

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    Default Re: Possible GPA - nasal deformity

    Rae82 - I know I commented on the very smallest aspect of your situation and something probably of no concern -especially right now for you. It was the only part of your situation that I thought I had something useful to share. I wish I could help figure out your much more important and pressing aspects. I DO know what it is like to have some trouble with breathing and that it is much more difficult to deal with than it sounds like.
    I've had tracheal dilation three times for subglottic stenosis where my breathing one of the times was severely impaired. Man, it doesn't get much more important than being able to breath.

    One thing I could add is that you mentioned this happen in the absence of other symptoms that might help point to a cause. It IS a strange feature that nose/sinus and throat involvement in Wegener's can happen independent of the rest of the manifestations of the disease. In fact this is exactly what happened to me. The stenosis happened , for me, slowly over a period of months and with NO other symptoms that I would associate with Wegener's. It likes to do its own thing and apparently doesn't need any help from the other guys.

    I of course don't know if this applies to you but I wanted you to know that is a known possibility. I know too that in cases where the cause CAN be attributed to active Wegener's the ENT will be extremely reluctant to do any repair work that would instantly help you feel better. Of course each case is unique too.

    Once the cause is found it sounds like you can get internal repair work done that will get the structures back to normal. I hope so. I wish I had some better insights for you. I know what you mean about jolting awake - it is NOT anxiety. Until AFTER it happens.

    I should add that my stenosis WAS treated all on it's own as my breathing was so severely impaired something had to be done. The doctor examining me said that if I had just walked into an ER in the same condition I would have been taken to surgery right away. He said that it only gotten to this degree of restriction with out me panicking because it happened so gradually and I had adapted mentally to it because it was so slow.

    Your jolting awake is your bodies automatic response that it knows you are falling into a state that you must wake up from. Very, very disturbing and adds very large amounts of anxiety to your other symptoms- just as a bonus. Not as a cause. But the doctor can see the anxiety and is not yet seeing the cause. So, I guess it's human to comment on something you know in the face of something super important that you don't know. Kind of like I have here.

    Your are doing the right things and I hope you get to the bottom of this soon and back on the road to normal life soon.

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    Default Re: Possible GPA - nasal deformity

    Thank you very much for your reply me2. Sorry I think I should have explained the first comment better. I meant that the doctor was unthoughtful in their comments to you about your supposed disfigurement, which was actually not that at all. I appreciate your reply very much and it’s so comforting to know that someone understands the anxiety that breathing symptoms can cause.

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    Default Re: Possible GPA - nasal deformity

    @Rae82

    I was reviewing this thread to see which doctors you have consulted and did not see a reference to an otolaryngologist (ear, nose, and throat). Since your blood work doesnít indicate GPA, it seems something else is causing your symptoms. I have a slightly deviated septum (lost a fistfight a long time ago), but it hasnít caused long-term problems.

    At any rate, I hope you can find an accurate diagnosis that leads to successful treatment.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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