What good are ENTs?

[FW WegWife]

I've read zillions of Weggie stories that start out with months and years of frustrating, pointless, and painful ENT visits. It seems like with WG, your condition has to progress to something life-threatening before you get a diagnosis. In the meantime, people are suffering permanent damage. If WG nearly always begins manifesting in the upper respiratory system, why aren't ENTs educated enough to catch it in the early stages? I can forgive my husband's PCP for not putting all his weird symptoms together right away. At least she was trying. But I'm harboring a lot of hostility towards the ENT that watched his condition develop for 6 months. Come on - Doc had to use tongs to pull enough beef jerky hunks out of a man's twisted sinuses to get a scope in there! How many other conditions does that mimic? What was he testing for when he sent the beef jerky gunk to the lab? Not WG, obviously. Why was he so happy to schedule surgery for 'deviated septum'? Wouldn't it have been appropriate to investigate why a perfectly normal septum suddenly became 'deviated' all by itself? At that last pre-surgery visit to go over those obscenely abnormal sinus CT images, when my husband told him he was now having severe joint pain, why did Doc tell him to cut back on his salt intake? Well, we ended up in the hospital with acute renal failure before any sinus surgery could happen. Yes, I'm bitter. Did any of you experience bitterness towards your ENT after another Doc diagnosed your WG? And did you get over it and go back to him/her for post diagnosis treatment, or did you find another ENT?

[pberggren1]

Ya, my ENT in the beginning did not catch mine either. He later said I was the first Weggie he has ever seen. My nose and sinuses were really bad but I went from fine to almost dead in 7 weeks.

[vdub]

I never really thought about it, but same here. I even got the deviated septum surgery. But the ENT never put the two together. My PCP is the one who made the diagnosis.

[NikkiNicole]

My ENT and original Rheumatologist seemed to be in agreement that there was NO way I could actually have Wegener's because I wasn't in any danger of dying and my kidneys were plugging along like they had no care in the world.
However ........
My PCP started this ball rolling to begin with due to a year of sinus infections/pain, that had now moved into my lungs and looked to be pneumonia that wasn't responding to antibiotics at all. So, she was angry that they were then denying it.
I have a new rheumatologist that I LOVE. She spoke with pathologists and the vasculitis specialist at UCSF and decided YEP, I have it and we caught it before it could do any serious damage to my body.
I feel like a very lucky girl.

[drz]

I felt very disappointed as I saw several. I am still seeing the only one who suggested I might need a biopsy to see what was going on if the crusting didn't stop in the Spring when the winter dryness ended. But before this could happen I ended up in the hospital where I finally got my Wegs diagnosed but by this time I was near death. We (my current ENT and I) have a long history together for many other ear and sinus problems before the Wegs stuff and he knows he is no Weg doctor but tells me what he sees and sends the info to my Weg doctor and this has helped me a couple of times. He also helped my ex wife get diagnosed for lymphoma when other doctors wouldn't order the biopsy to do so.

Another ENT doctor I saw earlier at another clinic had the bright idea he could cure the nasal crusting and bleeding from my Wegs by cauterizing the area. When that scab came off I almost bled to death and needed six hours in ER to stop the bleeding and two days of painful nose packs with the inflatable balloons. I lost all trust in that whole department from that experience.

You do raise a good point though as to why ENTs never consider GPA for our symptoms. Why don't they ask about joint pain and fatigue to rule it out as possible diagnosis?

[Dirty Don]

You do raise a good point though as to why ENTs never consider GPA for our symptoms. Why don't they ask about joint pain and fatigue to rule it out as possible diagnosis

My original ENT knew I had WG, saw a bit of it in my sinus area, but throughout her entire treatment of me (I also had the deviated septum thingy) she never appeared nor really talked about knowing what to do about WG within her realm/protocol of things to see and advise on. Of course, this is hindsight now as I was scared at that time...but from chat on here, some experiential, and putting other's experiences in...it seems ENTs can't do a lot about WG except to clean up damage, so it reasons they wouldn't be on the lookout to 'fix' WG at first...it's an awareness problem, again.

[annekat]

Well, I'll jump on this bandwagon..... my ENT is a middle aged guy who has been practicing a long time and is well thought of in my community. I have respect for him. But he is THE ONE who was in the position of possibly considering that I could have Wegener's, and he didn't do it until 2.5 years after I'd been going to him for ear and sinus problems, including recurring infections, allergy tests and shots, the whole thing. He only considered Wegs after I marched in there with a saddle nose and a swollen parotid gland. My lungs had become involved and I'd been in the hospital overnight for a CT scan and other tests, where a smart internist had suggested Wegs, so by the time I got to the ENT, I already knew what it was and was reading the forum. The ENT biopsied my perforated septum and was pretty darn sure at that point that it was Wegs. He'd seen three cases, but he doesn't treat it, so that's being done by my pulmy. Why did he not consider it during those 2.5 years? I can only give him a break because he does see so many with allergies and recurring sinus infections who do not have Wegs, and he just categorized me with all of them. My allergy tests showed some strong reactions, leading him to think that was the cause of all the inflammation and blockage in my sinuses and eustachian tubes. It was logical. But ENTs need to be more tuned in to the Wegs scenario, the sudden severe ear infections, perhaps in adults who have never had one, the joint pain, etc. A lot of the problem is docs just don't spend enough time with their patients or ask enough questions to get a good overview of anyone's case. Different symptoms are seen as separate from each other and not related to one disease. Why would an ENT want to know about joint pain? Well, we know why, don't we? I must say that I think my ENT felt bad that he'd missed the boat, and was apologetic, although he was also a little excited, in a nerdy sort of way, that the mystery had been solved. I hope he has learned something and now thinks of Wegs a little more often when evaluating and treating his patients.

[Alysia]

I have so many stories concerning ENT docs, so I wrote them in a new thread. Im going to have new ENT doc, experienced one.

[mishb]

I have to disagree - My ENT picked it (pun intended) the very first time I went to him.
I call him my life saver.
After more than twelve months of doctor visits I was finally sent to an ENT and within 5 minutes he said, I think you have Vargeners.

Can't fault him or the group of them that I see at my hospital clinic visits.

I was told that there are many other conditions that case the creatures that can come out of our noses and also the crusting.
Can also be caused by bad allergies, so, I think that side of things could still not steer them towards WG.

[annekat]

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?