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Alysia
08-06-2013, 02:48 AM
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 :sneaky: 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 :crying: I almost fainted. He continued without blinking. Then he gave me ointment that only made things worse.
Another one was quite lunatic :mad1: He was speaking with "free associations", his clinic smells like dump :drool: (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 :love: 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" :unsure:, 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 :scared: "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 :sad:
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.

annekat
08-06-2013, 09:09 AM
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.

Debbie C
08-06-2013, 11:00 AM
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.

rebekah
08-06-2013, 11:38 AM
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.

Alysia
08-07-2013, 01:15 AM
thank you so much, Anne and Debra and Rebeka for your good words :thumbup:


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.

annekat
08-07-2013, 01:55 AM
thank you so much, Anne and Debra and Rebeka for your good words :thumbup:



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!

Alysia
08-07-2013, 04:03 AM
thank you so much Anne for your explanations and for being here :thumbup:

annekat
08-07-2013, 04:33 AM
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.:smile1:

Debbie C
08-07-2013, 11:42 AM
We have such a nice group of people on here.I know I wouldn't have made it this far without everyone's caring:hug2:You have all helped me thru this more than my own family

annekat
08-07-2013, 11:54 AM
We have such a nice group of people on here.I know I wouldn't have made it this far without everyone's caring:hug2:You 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.

Alysia
08-07-2013, 12:19 PM
We are like a family here, and we can help each other through this better than anyone.

very true. I an grateful to be in the family of this forum. I love you.

annekat
08-07-2013, 12:21 PM
very true. I an grateful to be in the family of this forum. I love you. Me, too. And I love you, too.:love:

mishb
08-07-2013, 08:52 PM
Aww Alysia, you poor love. How horrible it would be to go through all of that.

I just posted on the other ENT thread, that my ENT diagnosed WG within 5 minutes of seeing him.
He was my life saver and referred me to a City hospital full of specialists, so that I could get the best care.
I saw his son (also an ENT) about two weeks ago at this hospital and told him that his father saved my life.

I really just can't begin to imagine the horrible ordeal that you have gone through.

I hope the new guy is as wonderful as he sounds.

Big hugs to you - I wish we could all get together to keep you safe. :hug2:

DJS
08-08-2013, 01:49 AM
After my wife was in the hospital with her lungs full of unknow gunk, we were looking into other symptoms, a month and a half earlier, she had a sudden loss of hearing in her left ear and I came upon this link:
https://www.nidcd.nih.gov/health/hearing/pages/sudden.aspx

This one said that if you have a sudden loss of hearing, it is a medical emergency, get medical attention fast. I don't know if it would have lead to the discovery of GPA any earlier but she didn't think it was significant at the time. I wasn't until she went to the ER because it was Monday and she didn't want to be on hold on the telephone with her PCP just to get another antibiotic. Her chest X-ray was awlful and all full but the lung docs didn't have a clue. They first suspected something like scarcdosis which is similar and they began a heavy dose of steroids right from the get go. Then they took a Broncoscopy and got a sample to culture. Two weeks later they got a positive diagnosis for GPA (Wegeners) and consultated with a Rheumy about treatment. The principle Lung Doc new the combination of Cytoxin and Pred but the Rheumy changed his Cytoxin dose from two pills daily, once in the am and once in the pm to two pills in the AM with lots of water to avoid bladder damage. The Rhemy felt that an afternoon pill would sit in the bladder too long with out adequate liquid and would not get flushed out.
We also had her see a ENT but he said that it was too late because her ear was dead by that point. So if we knew then what we know now, I still don't think the hearing loss would have triggered the discovery of what was really happening. Now after one year, we would really wish that the human body had a dash board that we could look at to see the oil pressure (white cell count) or the other multiple functions going on or not.

DJS

Alysia
08-08-2013, 03:09 AM
The doc was good :thumbup: My nose, much less :thumbdn:
First, again, I discovered how important it is to go to a doc who knows wg.
He did endoscopy and saw that at one side there are deep inside what he called "adhesions" (I don’t know if this is the word in English) and he said that this is what disturb my breathing from nose. In the old CT he saw that there were such "adhesions" also at the other side of the nose, but they disappear, so maybe we can hope for those to disappear. If not, he recommended a surgery, to cut and open and put a "stent", but not now….:scared:
He also said that he saw noses much worse then mine, inside and outside.
he was amazed to see the impact of rtx while comparing CT before rtx and update one.
He said that the nose inside looks much better then he thought it may be considering my diagnosis.
Considering "saddle nose", he said that the bone is intact but the cartilages were "eaten" by wg.
He said that he think that saddle nose surgery can be done while on meds, although he said that the damage can returned again.
I now have really good ENT. He gives me more then an hour, was gentle and professional and was also glad to have me, he called his intern to join us, introducing me proudly.
It seems there are not many known weggies in Israel. I hope they are not dying somewhere without being dx.
I'm glad that I finally have good ENT doc. but I'm also sad and tired :crying:
Thank you for "listening".

annekat
08-08-2013, 06:07 AM
Thanks for sharing your experience, the good and the bad, with us, Alysia. I'm so glad you finally have a good ENT who knows Wegs. I wonder, too, how many Weggies there really are in Israel who don't know they are Weggies! That is a sobering thought. I can only hope that awareness of WG and other vasculitis and rare AI diseases will increase everywhere in the world.

Barbara N
08-11-2013, 05:05 AM
I love your new profile picture. you are a beautiful girl. After a series of mistakes and some bad surgery I was left with no nose and when they gave me prosthetic noses they were so ugly and the glue you use to keep them on attacked my eyes and I lost my vision for a year so I have to wear a patch every day and night-. I never take it off and when I take the bandage off and see what I really look like it makes me cry. I have gotten used to being started at like a circus animal and lead a normal life. My husband has been fantastic through the whole thing, I never felt unloved. This is my life and I will make it as happy as I can.

Alysia
08-11-2013, 12:32 PM
I love your new profile picture. you are a beautiful girl. After a series of mistakes and some bad surgery I was left with no nose and when they gave me prosthetic noses they were so ugly and the glue you use to keep them on attacked my eyes and I lost my vision for a year so I have to wear a patch every day and night-. I never take it off and when I take the bandage off and see what I really look like it makes me cry. I have gotten used to being started at like a circus animal and lead a normal life. My husband has been fantastic through the whole thing, I never felt unloved. This is my life and I will make it as happy as I can.

Dear Barbara,
I love you just as you are :love:
you are strong and touching and inspiring woman :hug2:
we are blessed to have you here.

Debbie C
08-13-2013, 10:57 AM
Alysia,did you go to your new ent yet if so how did it go ??

Alysia
08-14-2013, 01:07 AM
Alysia,did you go to your new ent yet if so how did it go ??

Hi Debra,
great picture ! you look awosome :thumbsup: and cool :cool1:
so nice to see you.
lately there are more and more pics here, and it is so nice to see the face behind the name.
i wrote in this thread about the visit at the new doc, please read my post from 7 aug.
thank you for your concern :hug2:

annekat
08-14-2013, 03:37 AM
Nice pic, Debra! So you are a motorcycle mama!

Barbara N
08-14-2013, 04:49 AM
Me, too. And I love you, too.:love:

Me too and I am so happy to know you all and I love you too. We are so lucky , thank you -Andrew, again for getting us together and keeping us together. You can just feel how much happier we all are when you read this forum.

Debbie C
08-14-2013, 10:57 AM
I just read the thread ,I don't know how I missed it before. But I am SOOO happy you finally got a good ent:hug3: And hopefully like he said the adhesions (which is a word in English also ) will go away like the other side. Aren't you supposed to get more RTX again soon. I know your sad about the news but look at it this way ...it could be worse and he could have been another bad dr. so you have alot to be happy for:biggrin1:
I went to my ent office today for my hearing and balance check. My hearing is still the same and has not gotten worse but my balance is way off. I never had that test before and 9 hrs later I am still dizzy. They blow cold air into your ear ,have you look at a certain spot in the room,then cover your eyes and you have to try to keep your mind fixed where that spot was while they ask you questions like name states,or fruits or count backwords from 100 by 3. Then they do the other ear. After that they use warm air.I had to take a break before she did my one ear for the last time . I was so dizzy I thought I was going to be sick. And she even said that I was way on top of the chart and made the last one shorter.She said she never tested anyone that high on the chart !!! But she was really nice,she got me some crackers and water and made me sit back in a recliner for about 20 min. until I felt good enough to go. Next week I go :(to the optomologist,a nueroglogist and back to the ent for the results and game plan . Fun week ahead of me .

Debbie C
08-14-2013, 11:03 AM
Nice pic, Debra! So you are a motorcycle mama!

Thanks,Andrew was able to get it posted for me,I don't know what I did wrong. But yea I like riding. I was thinking about buying a scooter but my feet won't touch the ground. I am looking at this rebel. But than I'm thinking my boyfriend has 3 harley's and a chopper..I really don't need to waste my money on that when I could buy shoes or clothes or something else !!!!

Alysia
08-14-2013, 12:25 PM
Hi Debra.
thanks for your encouregement.
I never heard of that test you did. it sounds aching :w00t:
I hope the results of all you tests will come good.
I'm going to have my next rtx at the end of september or so.

Alysia
08-23-2013, 12:10 AM
It seems there are not many known weggies in Israel. I hope they are not dying somewhere without being dx.
.

I went to the cinema with my children. when the movie started it was too loud (my ears really aching when there is high volume), so I ask the girl who worked there to make it less loud.
even in the dark cinema I could see without any doubt: the girl has saddle nose !
I can recognize it. her's was worst then mine. when she returned (after lowering the volume) I took her aside and asked : do you have wegener ?
she was surprised and said: yes, I do. I explained to her that I saw it by her nose and I showed her my nose.
and then we talked. (she is the first weggie I meet in Israel :thumbup: I already meet you, my dear friends).
she is 23 yo and it turns out that for at least in the past 3 years her nose was deteriorating and she passed surgeries. for 2 years no doc thought it is WG.
how can't they see that such a nose is like "stamp" of WG ?! :predrage:
after 2 years of problems with nose she got kidney involvement and only then came the dx. then she got RTX and she is ok now.
we changed phone numbers and I told her about the forum but she said she will not come here (I didnt ask why, maybe because of her english)
I hugged her and I told her I'm so happy to find her.
I think she was pleased to see me, and also not exactly knowing what to do with this talkative emotional lady (me) :blushing:

annekat
08-23-2013, 01:04 AM
Alysia, that is touching experience you had, sort of heartbreaking and exciting at the same time. My heart aches for what that young woman went through with her nose and the delayed diagnosis. It is about time doctors all over the world get a clue about Wegener's. There are plenty that do have the appropriate awareness of it, and apparently plenty who are totally in the dark. If she has to be a Weggie, I'm glad you met her.

pberggren1
08-23-2013, 03:33 AM
That is so nice of you Alysia to reach out like that. I'm sure you made a very good impression on her.

mishb
08-23-2013, 08:47 AM
Wow, good on you Alysia :thumbsup:

I would have been too scared to approach her, I would feel that I was sort of embarrassing the poor girl. You have done a good thing, and I should learn from you.
Were you her first "encounter" as well, or does she know of others?


Is the saddle nose only WG appropriate or can it also happen with other diseases/conditions?

pberggren1
08-23-2013, 10:32 AM
One of the first things I do when I walk into a waiting room at a clinic or hospital is shout out: WHO HERE HAS VASCULITIS?

NikkiNicole
08-23-2013, 10:39 AM
Seriously, Phil?! haha. When I first heard the word Vasculitis it sounded like an STD. I know better now!!!!

pberggren1
08-23-2013, 11:08 AM
I am very serious Nicole.....lol

Debbie C
08-23-2013, 12:07 PM
Alysia that is so great that you were finally able to meet someone there with wg also.:biggrin1: She must live nearby if she was at the same cinema. Hopefully you two will stay in touch,too bad she won't join our group. Maybe in time she will . Hope you are feeling well.

Alysia
08-24-2013, 02:07 AM
Were you her first "encounter" as well, or does she know of others?
Is the saddle nose only WG appropriate or can it also happen with other diseases/conditions?

thanks, my friends, for your comments :thumbsup:
Michelle, I didnt ask her about meeting other weggies. she looked kind of helpless trying to survive.
I think that in the beginnig not everyone is searching for other weggies.
we are already "wg-veterans", so we have more "internal space" to search and meet other weggies.
sometimes in the beginning (and I rememeber myself) you prefer denial and meeting other weggies is in contrast to denial.
about saddle nose - I check in "find Zebra" and wg comes in the 5 place. but 1-4 are much more weird and rare. It is awful that ENT docs don't recognize the shape of saddle nose at one minute. as we already do.