What good are ENTs?

[pberggren1]

I have to admit the first ENT I saw, which is the one I stuck with long term, did not have a clue that it could be Wegs. He always calls me the expert as he only has 3 Weggies.

But, having said that, he has been great over the years. And without an ENT I would not have my new bionic ears to hear with.

[mishb]

You are lucky, Michelle, and I don't know if any of your docs are listed on the VF site of specialists, but it sounds like you have a great team that could be recommended to anyone in your area. And it's not just ENTs, there have been other docs who have been described on here as very inept, and even closed minded, when dealing with people who turn out to have Wegs. GPs, PCPs, as well, need to be trained to consider this in people with our classic symptoms of ear and sinus inflammation, joint pain, et. You are right that ENTs see many people with these symptoms who don't have Wegs. I wonder what it was that made your ENT be able to dx you so quickly?

Hi Anne,

The referral letter from the doctor to the ENT stating my previous medical conditions. - bp, ra, scleritis and right ear deafness as well as the sinuses that didn't response to antibiotics.
I'm pretty sure that the letter probably said it all for him - however, I was extremely lucky because his son, a few years prior, had completed a thesis on WG for his University degree.
He then referred me to his son at the City hospital.

Someone was certainly looking out for me, I'm sure. Coincidently I was only referred to this ENT in the first place because he started one day a week at the doctors clinic I go to.....that very week.

I'm not sure that they don't have Australian specialists on the VF website

[annekat]

I don't know why they wouldn't have Aussie specialists, since they have them listed from England and other parts of the world.... maybe they are specialists but haven't yet been recognized as such. I don't know how one would go about rectifying that. I noticed there is also a list of New Specialists on the site on the same drop-down list as the Medical Consultants where our best known specialists are located. I think some of those were in non-US and non-England parts of the world, but I haven't looked at it for awhile so can't be sure.

I think my scenario was dramatic enough in the fall of 2008 that my ENT should have pursued the possibility of Wegs: severe bilateral antibiotic-resistant ear infection, followed by weeks of coughing and fatigue, hearing loss, sinus issues, and some severe joint pain that I thought was caused by the strong antibiotic Levaquin, but in retrospect, was probably good old Wegs joint pain. I did get better on my own, but kept having recurring symptoms, largely thought to be allergy-related, until winter of 2011 when my lungs got involved in a big way (though not as bad as some people's). For a couple of months prior to dx, I was treating myself for joint pain with prednisone gotten online from one of those "Canadian pharmacies" where you don't need a prescription. An expensive way to get a cheap drug. But I didn't think anyone would prescribe it for me, for some reason.... certainly not my ENT who is not a joint doctor and thought I was already getting pred too often for the recurring sinus infections. 5mg. a day did the trick for the joint pain.

[Natalie]

yep same here I'm angry at the Gp I was seeing with ear Trouble , None of the antibiotics were working and ears were getting worse and worse . Finally got referred to specialist ENT and still just visits saying you have glue ear you must have an infection from water blar blar , wasnt until my nose started to kane he sent me for a biopsy 3years later! .
I have had some great ENT docs over the years and some really horrible ones same goes for GPs. If only I knew then what I know now !

[annekat]

Well, I've only had the one ENT and despite everything I think he is a good doctor. (I've heard he is an especially good surgeon in the ENT field, but I haven't had to go there.) He just needs to spend more time with his patients and get the whole story of what they are going through, be like a detective, get to the bottom of it. Most docs these days don't seem to have time for that, too many patients scheduled in a day. But I'm not switching ENTs because I don't know what I'd get!