PDA

View Full Version : Doctors - Sydney, Australia



katwoman
11-09-2009, 05:51 PM
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
11-09-2009, 08:47 PM
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
11-10-2009, 12:48 AM
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
11-10-2009, 05:26 PM
.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
11-10-2009, 08:15 PM
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
11-11-2009, 07:51 AM
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
11-11-2009, 02:52 PM
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
11-11-2009, 09:36 PM
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 :D

Sangye
11-12-2009, 02:37 AM
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
11-12-2009, 02:43 AM
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.) :(:confused::mad::rolleyes:

Jack
11-12-2009, 02:49 AM
All the doctor's surgeries and hospitals here have anti bacterial gel dispensers at every doorway which you are encouraged to use. Is this the same everywhere?

Doug
11-12-2009, 02:56 AM
Yes, same here. In fact, care centers for the elderly, the place I used to work, and other public places often times have these dispensers. When available, I use them! Another thing that's nice are electonically opening doors, so there's no physical contact with a handle.

Sangye
11-12-2009, 05:12 AM
I went in a bank that had two giant bottles of it--one at the Information Desk and one by the tellers. Each bottle was 2 liters!

katwoman
11-13-2009, 08:54 PM
I carry anti-bacterial gel in my bag... along with everything else except the kitchen sink...lol ;) Its good to have it on hand (we don't have dispensers in my part of australia :() its a great idea though!

coffeelover
11-14-2009, 01:57 AM
I have two HUGE bottles of sanitizer by my desk and customer area. I know I appreciate when businesses have a bottle close by. Money is the diritest thing! Can you imagine all the hands that have touched that stuff.

I have become a freak for cleanliness. Almost obsessive!
LIsa

Sangye
11-14-2009, 02:11 AM
Well yesterday I topped myself. I went to the public library. It was pretty packed and I tried not to stay for long. The books I got were fairly new titles, so had been checked out and handled a lot recently. When I got in the car, I cleaned their plastic covers with an antibacterial wipe. That was a first for me, but it seemed logical. :D

coffeelover
11-14-2009, 02:12 AM
very logical. I would have done the same thing

andrew
11-19-2009, 11:57 AM
Katwoman: Have sent you a PM with the contact details of a WG Doc in Newcastle.

Anyone else needing the contact details for this WG Doc in Newcastle, NSW, Australia can PM me or contact me via email.

Cheers

katwoman
11-25-2009, 06:20 PM
I went and saw my ENT today, who by the way who is wonderful and never charges me for a consultation he always puts it all on Medicare, last time I went he said its not your fault you have this god awful disease, he has been amazing and really understanding. Sadly, he was super-impressed by what he was able to clean out of the nasal passages (yes its rather disgusting, what a career to pick - no pun intended :D) and said as far as he was concerned by what he can see in my nasal area its definitely active (although I have other symptoms presume that is the marker for him).......it was nice to be able to breathe out of it, even it was only for a couple of hours.

Anywhoo I'm rambling, he asked if I had an appointment to see my local rheumy and I mentioned I had got a referral to an immunologist - he doesn't seem to think its worthwhile the trip and said because I'm already diagnosed he will just put me on treatment rheumy would and refer me back to local rheumy - just wondering what anyone else thoughts is on this:confused:?

Jack
11-25-2009, 06:55 PM
Nasal crusting has always been my indicator of active Wegener's. Saline flushing will keep it reasonably clear to relieve symptoms (you should not remove the deposits dry, it just causes more damage), but it has always taken heavy duty medication to put a stop to it.

katwoman
11-25-2009, 07:15 PM
I use a nasal flush and have a thing called 'nozeoil' - believe its sesame oil or something similar and also lubricants but i find the crusting is way up of the back area of the nose and forms a solid bloody crust. They seen to go along the sinus passage (I hate talking about this its gross but I guess we are all the same boat) they are tubular and normally 4cm or even longer in length. When and if I can get to them (my goodness I can feel it coming away from the sinus walls and feels wonderful when out but doesn't take long to reform) as I mentioned it completely seals up so nasal sprays and lubricants don't really help - I need the scissors and separator my ENT use....:D what fun!

Like you Jack the sinus was my original initial symptom and seems to be again.

Jack
11-25-2009, 08:05 PM
I used to use a 50ml syringe with an extension tube on the end to get right up into my sinuses with my own mix of salt and sodium bicarbonate. It stings a bit at first, but it is surprising how much crusting warm saline will remove. I used to get through the best part of a litre per session with my face held over a bowel.
I know what you mean about the extent of the crusting, believe me I've been there and although it all sounds a bit gross to discuss, it is valuable information for others.

katwoman
11-25-2009, 08:35 PM
It is definitely valuable information.

Jack, its great hearing from you about your sinus issues with WG, sometimes I wish they would just take the nose off all together and on top of all the nasal crusting I miss taste, it comes and goes but more often then not it goes!

Jack
11-25-2009, 09:29 PM
Don't loose hope on that one! I lost my sense of smell completely for around 5 years, but it came back again! :) Not quite as good as new, but not bad.

elephant
11-25-2009, 09:42 PM
I visit the ENT quite often. Had four sinus surgeries under two years. I use a sinus rinse twice a day. If I don't use it, I feel like I didn't get the crap out. My sinus is better, I still have diminished sense of smell/taste.. I love food!:D So what a bummer. I usually have to eat strong flavor food like salmon, onions/garlic( family moves to the other side of the house), alot of herbs/spices and dark chocolate.

coffeelover
11-26-2009, 02:28 AM
I too rinse twice a day with a salt/saline solution. (recipe is on here from a past thread)
It does make things better than when I do not rinse, but it never clears the problem completely.
I really hate having to do one more thing in my day. Pills, nasal irrigation, shower, feed the dogs, exercise, work, make a meal, grocery shop, keep on on meds (be sure not to run out) keep up on milk and bread, it is so difficult to make it all work!
LIsa

Jack
11-26-2009, 03:13 AM
I sympathise Lisa. Sometimes, just getting through the day can seem like a daunting task.
How do you use the rinse? Using the syringe method I described, the solution would go up one nostril and down the other. Not sure if it is supposed to do that, but it cleared out the whole system.

andrew
11-26-2009, 09:12 PM
Anywhoo I'm rambling, he asked if I had an appointment to see my local rheumy and I mentioned I had got a referral to an immunologist - he doesn't seem to think its worthwhile the trip and said because I'm already diagnosed he will just put me on treatment rheumy would and refer me back to local rheumy - just wondering what anyone else thoughts is on this:confused:?

Go anyway. You have nothing to lose. Make a list of all the questions that have been bugging you and take them with you. Tip: Prioritise them. The guy will probably be busy and his appointment slot may not allow for the full list to be answered. Make a note of your treatment regime/drugs and see what he thinks (he'll ask you what meds you're on anyway). Let the Immunologist decide for himself if he needs to see you or if he needs to refer you.

Another tip: it might seem silly, but prepare something for when/if he asks you how you've been feeling. My mind usually goes blank and I say "oh...fine thanks" even though I may have just come off a dose of pig flu :D

Question: Did you need to get a referral for the appointment? You'd better check if you aren't sure. I have to have one for my Immunologist.

katwoman
11-28-2009, 12:32 PM
I do have a referral for the Immunologist, just waiting to hear back, apparently there is a team that valuates patients and then classes them on urgency before appointment is made, hopefully hear back from them next week.

I totally need to do a list, like you I go blank with not only how I have been feeling but also the questions I wanted to ask.

I have an appointment on Monday with Rheumy, I already know that it will be back on meds, to date all I have been taking is Bactrim. Part of me was hoping that if I went to Immunologist he would tell me no need for Pred - that's probably wishful thinking I know.

timbo vic aust
11-28-2009, 09:57 PM
lisa i was the same too i had too many fingers in the pie so to speak i had ent thorassic and hospital doctors all passing the buck and not commiting to the disease but all of them saying we all think you have the disease; it took the professor of rheaumatology at monash medical centre clayton to take over and finally diagnose and start treating me properly. he could'nt believe they did'nt get rheam involved earlier you keep your chin up and be strong i feel the same way at the moment i am normally a very active person you have to tie me to a chair to keep me still . them all of a sudden i am getting around like an old man and struggling full on with fatigue and bad muscle and joint pain mainly in my legs ..
pS; and yes i love coffee too :)

coffeelover
11-30-2009, 12:47 PM
Timbo,
Thanks for the words of wisdom. I too have trouble "relaxing". I want to be on the move constantly! I just finished filling all the online paper work for the Mayo in Rochester,MN. Hopefully my ENT there will be able to direct me down the correct path. Although, feeling fine, I know that the connection with Mayo will be a great asset.
Lets have virtual coffee sometime
LIsa

Doug
11-30-2009, 02:41 PM
I do have a referral for the Immunologist, just waiting to hear back, apparently there is a team that valuates patients and then classes them on urgency before appointment is made, hopefully hear back from them next week.

I totally need to do a list, like you I go blank with not only how I have been feeling but also the questions I wanted to ask.

I have an appointment on Monday with Rheumy, I already know that it will be back on meds, to date all I have been taking is Bactrim. Part of me was hoping that if I went to Immunologist he would tell me no need for Pred - that's probably wishful thinking I know.

It's been mentioned bore , but please go to this link for a list of questions weggies need to ask their doctors (some or all!) It'll save you a little time, I think.

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Go to Newly Diagnosed (at the top left of the page, second item in the brown highlighted section), then, on the righthand side, go down to the section titled About Vaqsculitis: Our Online Resources. Seven items down from that heading, you'll see Questions to Ask Your Doctor. I'm sorry I'm posting this so late- possibly too late, for it to be of use to your for this doctor's visit, but the information is helpful for all subsequent visits and doctors. I wish I'd been online on this site yesrterday or the day before! Good luck on your examination!

Doug
11-30-2009, 02:54 PM
Timbo,
Thanks for the words of wisdom. I too have trouble "relaxing". I want to be on the move constantly! I just finished filling all the online paper work for the Mayo in Rochester,MN. Hopefully my ENT there will be able to direct me down the correct path. Although, feeling fine, I know that the connection with Mayo will be a great asset.
Lets have virtual coffee sometime
LIsa

Good for you! It can only be a blessing to live nearly in Mayo's backyard~!:)

katwoman
12-03-2009, 08:07 AM
Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Go to Newly Diagnosed (at the top left of the page, second item in the brown highlighted section), then, on the righthand side, go down to the section titled About Vaqsculitis: Our Online Resources. Seven items down from that heading, you'll see Questions to Ask Your Doctor. I'm sorry I'm posting this so late- possibly too late, for it to be of use to your for this doctor's visit, but the information is helpful for all subsequent visits and doctors. I wish I'd been online on this site yesrterday or the day before! Good luck on your examination![/QUOTE]

Thanks Doug, I will check it out and print off copy (if u can do that) so I can have for future visits, it will be good for the immunologist anyway - which by the looks won't be until the new year. My visit to Rhuemy was better then I expected, he usually is very vague and just says were going to do this and this, but he was easier to talk to and actually for the first time asked what i thought we should do..wow but then said what the best options were and so we come to a mutual decision - which is the way it should be.

Doug
12-03-2009, 01:01 PM
Katwoman- sometimes it takes awhile, but most doctors can be housebroken! Ha! Sounds like your are doing what needs to be done h=to have a fruitful doctor-patient relationship. You already are strarting to see what an improvement that is! Good for you!:)

Nania
06-10-2010, 07:06 AM
This RH doctor specializes in WG. He is AWESOME and I had excellent care and results while being treated by him for 5 years for WG. I've sinces moved to Los Angeles and wish I can clone him here.
Dr. Harry Patapanian 9796-1192 this is his office number in Bankstown, but he also has an office in Chatswood area.

Hopeful
09-03-2010, 04:53 PM
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?

Hi Andrew,

I just saw you are in Canberra. Who is your WG doc?

Malissa
07-10-2012, 12:38 PM
Hi, my dad is in Wollongong and just not happy w his care. Do you know of any specialists who have successfully treated wegs patients as he is not tolerating the maintenance drugs Imuran I think and his dr not overly proactive in finding more. Any recommended DES in Sydney or Wollongong would be appreciated. Thanks malissa

katwoman
08-13-2012, 09:33 AM
Hi Malissa,
Has your dad been able to find suitable care. When I first became ill with WG I was visiting my brother in Wollongong, the doctor on call at the hospital in Wollongong base hospital that ended up treating me was a Rheumy called Dr Roman Jaworski, I found him very good with me and when I finally left hospital he continued to treat me in Wollongong until the meds were correct and then referred me to a Rheumy in my local home town.
Let us know how your dad goes.
kat