Doctors - Sydney, Australia

[katwoman]

Hi All, just wondering if there is anyone on there that can recommend any doctors in Sydney area that have a good understanding of WG?

Unfortunately, living 4 hours away makes life difficult but I need to find someone that understands - my Doctor, Rheumi and ENT just don't have experience up here with WG and recently not feeling to crash hot, although seeing doctor on wednesday and getting blood tests, I would love to be able to see someone who basically knows what were dealing with!

And any Rhinoplasty's down in Sydney - have saddlenose and everyone my ENT contacted in Sydney refused to even look at it let alone operate...I hear people in the US getting surgery there must be someone here!

thanx
katwoman

[andrew]

I think you'll find that surgery on anything like Saddle Nose that has been caused by WG is generally done when the patient is in remission as it gives the best chance of success. Not 100% on that one but fairly sure.

I'm in Canberra. I'll give my WG doc a call tomorrow and ask for a recommendation. I'll pass it on to you. Where exactly are you located?

[Doug]

You are right on the saddle nose surgery, Andrew. This may well be the case for any surgeries weggies have after diagnosis. It's good practice to bring the fact that you have WG up with doctors when surgery is required for any reason.

When I had oral surgery to remove necrotic jawbone, about 2-1/2 years after I went into remission, the oral surgeons consulted with the rheumatologists who'd treated me at University of Colorado-Denver, and they came over to the Denver Health hospital to examine and interview me about my state of remission, care after I left Denver, etc. before they determined I was fit for surgery. Since all of the major medical procedures for both WG and the oral surgery happened in Denver, CO, it was a simple matter for these doctors to get together to review my case.

In instrances where the doctors aren't in the same city, I would think the reconstructive surgeon would still want to have names of specialists he or she could call to determine your suitability for the surgery.

The main concern is whether you are healed enough so that your vascular system can restablish adequate blood supply to the graft. Clearly, if you aren't, you would undergo a fair amount of pain and discomfort for no benefit to you as the graft would probably fail and have to be redone at some later date. No competent reconstructive surgeon would want that for his or her patient.

So...be patient and be prepared to provide the reconstructive surgeon with telephone numbers of your weggie doctors or access to medical records that offer him or her compelling objective evidence of your suitability for reconstructive surgery on your nose.

[katwoman]

.I'm in Canberra. I'll give my WG doc a call tomorrow and ask for a recommendation. I'll pass it on to you. Where exactly are you located?

I would appreciate any help, especially on the doctors side of things. I understand about the nose surgery so what I really need is to get a good doctor that can establish where my WG is at, at the moment.

I am located in Port Macquarie, which is about 4 hours from Sydney on the mid north coast - 2 1/2 hours from Newcastle - haven't heard about any doc's in the newcastle area though.

[andrew]

Oh! I have a client in Port MacQuarie (working on getting another one too). Lovely area! I'm in Newcastle a fair bit too. I spoke to my Doc's receptionist today. He's away until Thursday so I should have some feedback for you by the end of the week. I'm sure he'll be able to recommend someone, he knows everyone

[katwoman]

Gosh who'd have thought Australia could be such a small place...lol! That's amazing - yeah Port is a pretty good place to live, we have lovely beaches. If you ever up this way seeing clients, let me know your coming I would love to meet another Wegie out there!

Your doctor sounds really good, hopefully he might know someone up this way or Newcastle - but Sydney is cool only a 1 hour flight away.

[coffeelover]

My blood works shows that (a quote from my rhuemy) "Your specific antibody form Wegeners's is high at 19. I think it best that I refer you to Mayo for an opinion about your nasal inflamation. I am concerened that the imflammation reflects active Wegener's."

I called and told her nurse to get the ball rolling. Rochester Mayo here I come! She will set me up with an ENT, Wegener's specialist.
I am somewaht depressed as I was still in some denial regarding the nature of this disease. Logically I knew the possibilities, but for whatever reason I felt I could overcome the difficulties without too much intervention. I HATE DOCTORS! I Hate TESTS! I HATE PRED! And I scare easily.

All my other numbers are in range so kidneys etc are OK.

Any advice and expertise for me?
LIsa

[andrew]

Any advice and expertise for me?
LIsa

Yep. Get everything done and get it done now (like you're doing). A million needles and doses of pred. still beats having bodgy kidneys Keep the kidney's in the green zone!!

I hear you re: the tests. Waiting in the pathology lab while people around me cough, sneeze and puke is just delightful

[Sangye]

Lisa, I'm relieved that you're going to Mayo. I've just had a feeling that things are off. It's MUCH easier to treat a flare when it's very small, as opposed to letting it build and get out of hand. Don't go too far down the road in your mind. It might not take much to nip this in the bud.

I'm concerned that you're not getting in to a Mayo rheumy at the same time. An ENT can't address the whole Wegs picture. I suggest you ask your doc to set you up with a rheumy at the same time and just get it all done at once. Take good care and don't let yourself hang out with fear. He's a bad friend to keep.

[Doug]

Lisa- As unfun as it is to get the work done, I'm proud of you for getting it done in a timely manner. I would have guessed Dennis would have had to dragged you to another doctor, you were enjoying life so much in July! I'm with Andrew on the kidneys. Best of luck with your tests!

(I mentioned it once before, but it is worth repeating: I try to get appointments first thing in the morning so I can avoid most of the infectious sick. Regardless, I carry antibacterial wipes with me and wash my hands and face right after my doctor's appointment to try to tidy things up a bit, in terms of infectious agents I touched or touched and transferred to my face when I was not thinking. Whether I am any safer than I woulod be not to do this, I at least feel safer.)