hello from new member

[Pam C]

Hi. New member here.

I haven't been diagnosed yet, but have had night time nasal congestion, and dry nose for many years (30 maybe ) which led to probably unnecessary sinus surgery which started many years of frequent sinus infections. My ENT finally did some blood work 2 years ago and said my ANCA came back positive and referred me to a rheumatologist. ANCA has come back negative since then, but I had sub glottic stenosis a year ago in feburary and had laser surgery.

I guess my rheumatologist is waiting for some other organ involvement to diagnose me. I also have a saddle nose that happened over 20 years ago after a softball accident, and seemed to worsen after deviated septum surgery.

Some questions I have that I'm hoping some of you can help me with:

1. if I go to a vasculitis center for help with a diagnosis, do some specialize in Wegener's or will the closest one do? I am in South Carolina, so I think Emory is closest.
2. Has anyone been there and can recommend a specific doctor?
3. Can a nasal biopsy be accurate for a diagnosis, or do I have to wait for other organ involvement? Sounds like from what I've read about the meds, that only nasal involvement/sinus infections at this point might not be worth the side effects of the meds, anyway.
4. Also, has anyone had success with saddle nose repair surgery?
5. Also, I'm having lab work to check my kidneys done once a year. Is this often enough for someone with Wegener's, and should I be having yearly chest x rays?

I've read that using cartilage from ear/rib cage can be reabsorbed by the body, so doesn't last. But my ENT mentioned another material, and said he had only had one patient that had this material erode through. Makes me worry that with my luck, I'd be his second pt. to have that happen to, then where would I be? ( He was reluctant to discuss it, of course ). He also seemed reluctant to repair my nose if I possibly had Wegener's. So, I'm wondering if I should look for a plastic surgeon, and how does one go about finding one who really specializes in saddle nose repair ( not just advertises that he does ), as it is different from other types of nose jobs, when you are actually missing cartilage.

Should mention that my ENT now does facial reconstruction for cancer patients, so maybe I should just trust him, but have been burned twice now by 2 different ENT's doing sinus surgery that only made things worse. I definitely have trust issues when it comes to doctors and elective surgery. I'm also an RN, which only compounds this problem!

I'm just so tired of not being able to breathe through my nose well enough to sleep. End up sleeping in a recliner most nights, which I can't do if I want to travel. As you can tell, my rheumatologist hasn't given me much information, but after reading all of your posts, I have a lot more questions to ask her at my next visit, including how many Wegener's pt.'s she has. I hate to step on these doctor's toes, but am finally learning that I need to ask these things in order to find the best care for myself. Thanks for reading such a long post and for what y'all have taught me so far!