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Thread: ENT docs !

  1. #1
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    Default ENT docs !

    Hi,
    In my first year of having WG, I didn’t get any treatment but pred at the acute beginning. 2 Biopsies from nose returned negative, so none of the docs thought that I must get treatment (they were wrong).
    I was visiting about 10 ENT docs. My nose was sore, bleeding and full of "chunks", my ears were aching and full of fluid which refused to drain and my hearing was deteriorating. It was so scary.

    I saw some ENT docs at hospital and some at their clinics. It was very frustrating.
    One ENT at hospital after waiting 4 hours for him, checked me 2 minutes, very aggressively, and then told me: you have nothing, go home. He was rushing to eat his lunch.
    Another ENT, which his name in Hebrew means "Slaughterer" was "devoted" to stand behind his name: he took all kinds of "weapons" and he said: first we clean your nose: he was "cutting" and pulling out the chunks. I don’t have to tell you how intolerable it was. I was bleeding terribly but it doesn’t bothered him. I was tearful I almost fainted. He continued without blinking. Then he gave me ointment that only made things worse.
    Another one was quite lunatic He was speaking with "free associations", his clinic smells like dump (at least I was glad I could smell something). He told me I have nothing but stress, and proposed to me to get his homeopathic treatment, by cost of no less then 100 $ for a meeting, not less then 8 meetings. Of course I never returned to him.
    Another one, in hospital, was very enthusiastic to have me without thinking too much he declared: "we are going to make you tubes now". he gathered his students to come and see him doing it. I had to cool him down and disappoint him and his students. I didn’t trust him.
    There were others, less challenging. I remember for good one ENT, very old, who was very empathic to my crying and desperation. He offered me 20 mg pred for 5 days, which was not strong enough, as you know.
    Finally, I settled with ENT doc who was humble enough to say a lot of "I don’t know" , who is very gentle while checking me, who have hearing aids, which means that he is kind of "one of us". his secretary is letting me in whenever I need, without waiting. But still, he lookes terrified and helpless every time I'm getting to his office, something like "OMG, here she comes, what am I going to do with her?". Poor doc. lately he have find for me one experienced ENT doc and he send me to him while breathing in relief.
    My nose became more saddle this year. I'm worried about it, and depressed
    On wednesday I'm going to meet him. Long trip, about 2 hours each direction, using my car, train and texi. I e-mailed him and he was proud to tell me that over the years he saw about 10 weggies and maybe some more with unclear diagnosis. he will be the first ENT I'm going to see, after almost 5 years of WG, who already saw any weggies but me. he asked me to bring update sinus-CT.
    any suggestions as to what to ask him will be very welcomed.
    to be continued...
    BTW- since I'm now feeling secure and safe here, I put my pic at my profile, so you can say Hi.
    thank you for being here.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Oh, Alysia, you have had such a series of nightmares with those ENTs! I hope the new one turns out to be everything you wish for. And thanks for posting your pic on your profile. You are an attractive woman. The saddle nose is similar to mine. I think I wear my glasses a little lower down on my nose to hide the dent. If it has gotten worse, I am sorry. I'm counting on mine not to, and it isn't showing any signs, but once in awhile I feel a small pain there and get a little worried.
    Anne, dx'ed April 2011

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    Wow Alysia you sure have had some bad ent's especially the "Slaughterer " .Your picture is very nice..you are very pretty and your nose isn't that bad. I think you think it's bad because it you,I would probably be the same way. I have been going to the same ent since this mess started,I have an appt with him Wed. actually. I don't have saddle nose so I don't know what questions you can ask except what has he done in the past with people with your condition and do you have to be pred free ,like I think a few have mentioned before surgery? My problem is my nose will turn ice cold,I sometimes have to put my head under blankets to keep it warm.I need a nose mitten !!Is that a sign of getting saddle nose ? Anyway I hope you the best of luck and hope he is kind and gentle with you. Too bad he is so far away. Have a safe trip and let us know what he says and does.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Oh Alysia, I am so sorry to read about your horrible experiences with ENT docs. I'm glad you are going to finally see one that has some experience; I hope he is a great doctor and can help you. I'm sorry to hear about your saddle nose worsening. I don't have one and can't imagine what's it's like, but you are gorgeous in your profile picture.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    thank you so much, Anne and Debra and Rebeka for your good words

    Quote Originally Posted by annekat View Post
    The saddle nose is similar to mine. I think I wear my glasses a little lower down on my nose to hide the dent. If it has gotten worse, I am sorry. I'm counting on mine not to, and it isn't showing any signs, but once in awhile I feel a small pain there and get a little worried.
    Anne, my pic is from now. glasses were an issue, since I was looking for glasses that are "light", not to "burden" the poor nose.
    I think you don't have to worry because the pain is not small at all. so I believe your nose is ok and will be ok.
    Debra, cold nose is not the beginning of saddle nose.
    it was months and years of bleeding terribly and having huge "chunks" and aweful pains that lead to saddle nose.
    Last edited by Alysia; 08-07-2013 at 01:22 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Quote Originally Posted by Alysia View Post
    thank you so much, Anne and Debra and Rebeka for your good words



    Anne, my pic is from now. glasses were an issue, since I was looking for glasses that are "light", not to "burden" the poor nose.
    I think you don't have to worry because the pain is not small at all. so I believe your nose is ok and will be ok.
    Debra, cold nose is not the beginning of saddle nose.
    it was months and years of bleeding terribly and having huge "chunks" and aweful pains that lead to saddle nose.
    Alysia, the others are right that your nose does not look that bad, but having one myself, I understand your not liking it. In my case, I never had much or any pain before getting the saddle nose. Nor have I ever had a lot of bleeding, just some clots here and there, and occasional minor nosebleeds. I did have a lot of crusts and chunks, alternating with green runny stuff, as I think is common in people with nasal involvement.

    I understand the saddle nose results when Wegs inflammation deprives the area of oxygen and causes actual tissue death, so a hole develops in the septum where the nose cartilage is attached, and the cartilage loses its support and drops. Mine either happened very suddenly or I just didn't notice it because of my glasses and not looking in the mirror that much. I noticed it by running my finger over the bridge of my nose, it didn't feel right. Then I looked in the mirror and was shocked, especially when looking from the side. I had just been in the hospital and the doc there hadn't noticed it, or didn't say, nor had my pulmy said anything a couple days before that. So weird.

    I haven't really heard, except in your case, Alysia, of it getting worse once your treatment has gotten the inflammation under control. And I sort of figure my cartilage has already dropped as much as it can. But every nose is different! I don't think the people without saddle nose have much to worry about if their Wegs is under control. I think their nose pains, cold nose, etc. could be caused by Wegs but might not mean saddle nose is developing. I could be wrong, but I hope not!
    Anne, dx'ed April 2011

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    thank you so much Anne for your explanations and for being here
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #8
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    You're welcome, Alysia. Of course my explanations always have a chance of having some errors, since I am not an expert! I am glad you are here, too. You often have a very caring and helpful point of view.
    Anne, dx'ed April 2011

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    We have such a nice group of people on here.I know I wouldn't have made it this far without everyone's caringYou have all helped me thru this more than my own family
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Debra C View Post
    We have such a nice group of people on here.I know I wouldn't have made it this far without everyone's caringYou have all helped me thru this more than my own family
    I could say the same, Debra. My family would have to spend hours and hours on this forum, like we all do, to even have a clue about Wegener's and what our lives are like. I think we could say the same about a lot of our doctors. We are like a family here, and we can help each other through this better than anyone.
    Anne, dx'ed April 2011

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