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View Full Version : What should an ENT track and how?



whatthewhat
04-01-2014, 07:01 PM
Hi all,

I'm having trouble working with an ENT for our daughter, who is 15. I am worried our current ENT is uninformed about WG and is making stuff up as he goes along:crying: I also think he is reluctant to scope her very often. Can you please tell me what is reasonable to expect an ENT to do regularly for a weggie with sinus & nose involvement, and a history over the last couple years before diagnosis of ear infections? I know this is hard, since the disease is so individual, but I bet a couple of you (Phil!!) will offer an opinion. If I had one specific question it would be how do ENTs track ear damage BEFORE there is a ruptured ear drum or deafness / hearing loss?

thank you so much you guys.

MikeG-2012
04-01-2014, 10:01 PM
My ENT is running a scope in my sinuses every visit. I do have great insurance, and at over $500 per office visit when he does the endoscopy, I wouldn't want to pay that out of my own pocket. I am there for every 2 weeks since my flare up in November, and I get a good crust removal at every visit. Now that the sinuses are settling down, we will probably start spacing the appointments out a little more.

With this disease, you need an active doctor, not a passive one. One that is willing to try new things, research alternative options for his patients, admit when he doesn't know something, and most important of all, listen to you and your daughter when you have ideas/suggestions--even if they come from an internet site of other Wegener's patients!!! Mine listens intently when I have ideas, suggestions, etc. It is nice to hear him dictate some of those ideas back to my chart. When I hear him do that, I know that I'm doing something right or had a good suggestion,and he wants to document it for himself in his notes.

In my opinion, if you have ANY doubts or negativity about your ENT, it is time to find a different one. There are so many good doctors out there that whenever you are not happy, you should be looking for one where you can develop a long term relationship. When I got out of my sinus surgery two years ago, my ENT doc told my wife, "Your husband and I are going to become good friends over the next couple years..." That's what it should feel like, and it does with my ENT. He's awesome!

whatthewhat
04-02-2014, 03:16 AM
That's exactly how I envision it should be Mike! Thank you for writing.

pberggren1
04-02-2014, 05:38 AM
I'm not sure how or if a ruptured ear drum can be predicted or even hearing loss. I am able to see my ENT every month if needed. He is always willing to scope me if I ask and always looks in my ears and nose. I was his first Weggie. I saw him at onset before diagnosis and said to him then that I most likely have an autoimmune disease of some sort. He said all he knows is that I have a very bad case of sinusitis. Then 4 weeks later he was taking out a biopsy from my nose to confirm the Wegs. He felt very bad he did not think of Wegs before but he said they are not trained that way and he had never heard of Wegs before me. If I suspected hearing loss in any way I would have the hearing tested. I would have my hearing tested regularly anyway. I'm sure there is another ENT with a nicer attitude in your area that you can seek out. How is your daughter doing?

ingemlb
04-02-2014, 06:40 AM
A specialist who is uninformed and arrogant needs to be changed I feel. If they are not arrogant at least they are willing to learn. My ENT specialist has done a hearing test at every visit. I will see him today first time since the diagnosis. But last visit when the hospital sent me there for a biopsy he told me that once a year he has a patient where the sinus surgery doesn't fix the problem and that would be due to Wegener's. that was before I was diagnosed so I feel reasonably confident he knows what he is talking about. Well today I'll see.

I hope you find a good ENT for your daughter

drz
04-02-2014, 08:52 AM
When an ear drum is near rupturing from pressure inside it starts to bulge out and a good ENT or ER doctor can lance it to relieve the pressure and pain. I went to an ER once at 2 am to tell the doctor my ear drum felt like it was going to rupture soon. He was not competent though in that area and said he doubted it would. He didn't think I had an ear infection either. He further said he thought it was a vacuum buildup inside the ear drum in the Eustachian tube that was causing the pain. It ruptured two hours later. I went to see an ENT doctor the next day to get on antibiotic for my ear infection and told him my tale about his colleague in ER.

There tends to be no correlation between a physician's confidence in their judgement and their skill in being correct in their diagnosis.