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#155407 - 10/01/12 01:51 PM Help finding a new GP, New Maxillo, New MOUTH!!!
LynfromOz Offline
"OCF Down Under"
Contributing Member (25+ posts)

Registered: 12/15/07
Posts: 45
Loc: Melbourne Australia
Hi Everyone, As you guys are aware Ive been having problems with osteonecrosis, as well as problems with lumps on my tongue (biopsied and negative).I can't get ANY answers from the arrogant surgeons Ive been "allocated" at the Royal Melb Hospital. I didnt even get to see the one who did the actual biopsies after the small general I had!
I'm wondering if it is scar tissue on my tongue? I was told they are oral thrush...but does oral thrush cause large solid white painful lumps that dont move, and dont go away? I also still have osteonecrosis (there is still dead bone on my jaw). I had 30 treatments of HBOn and the small holes closed up, so the planned defribilation didnt go ahead. The biospies left stitches in my tongue, and it's left large painful lumps. It has made the pain worse and I am beside myself with the pain from my jaw and tongue.
None of the surgeons at the Royal Melb Hospital, or the Drs at their pain clinic, or my own GP, seem to have any answers, or know what to do with me. I have a great fear of the cancer returning and these "specialists" not picking it up. I have no idea what the lumps on my tongue are.
My usual GP is away, and the Dr (at the same clinic) seems to think the Surgeons should have operated on me (he also asked if I'd tried Buddist chanting, hypnotherapy and laser accupuncture, so you can imagine the kind of GP he is)
I would like to know if anyone in Melbourne Australia could suggest a new GP for me? I probably need a new GP and a new Maxillo Facial Surgeon, and perhaps a Dental Surgeon?
I am scared I will lose my remaining teeth and my jaw wont be strong enough to do anything with.
Please feel free to send me suggestions of Drs in the East of Melbourne. I live in Mt Evelyn, so as I've been needing to attend my Dr weekly for pain management, I would appreciate a Dr nearby.
I'm definitely needing a second opinion. I'm on MAJOR pain meds, and I'm thinking at this rate, I'll be on them forever.
I know many of you have worse problems than me...and that I'm really one of the lucky ones, but I am really scared and frustrated at the moment. I am sick of being handballed around and sitting here in pain, with no idea what I am supposed to do next.
Thanks in advance for any ideas the Aussie on here may have for a new Dr for me....and if anyone thinks what Im experiencing is normal after the treatment I had in 2007 is normal, please let me know (and I'll relax).
Best Wishes to you all Lyn
PS Im in Mt Evelyn (Melbourne)...so Eastern Suburbs would be awesome, having said that, I will happily travel to a good understanding GP.
_________________________
Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!

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#155451 - 10/02/12 03:38 AM Re: Help finding a new GP, New Maxillo, New MOUTH!!! [Re: LynfromOz]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8512
Loc: PA
So sorry to hear you are having so much pain. Thrush can hurt alot and so can osteoradionecrosis. Im surprised you only did 30 HBO. Your doc could have ordered more for you to help with the jawbone.

Its hard to help patients in different countries with medical professionals. While there are some members here from Australia, they may not live in your area. Best wishes finding a new doc and getting some relief for the pain.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#155514 - 10/02/12 10:01 PM Re: Help finding a new GP, New Maxillo, New MOUTH!!! [Re: LynfromOz]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
ET , it seems we still have the same problems. I just pray your lower jawbone isn't full of Mersa. If so it can rot your jawbone to where they can't rebuild a new one. That is my problem and went thru all that stuff making way for a new jaw and then they say the bone will just hold for a few weeks and have to come out.. Hope you are tougher than I am girl. LOL
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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#157062 - 11/03/12 02:58 AM Re: Help finding a new GP, New Maxillo, New MOUTH!!! [Re: LynfromOz]
Jay Jeong Offline
"OCF Down Under"
Senior Member (100+ posts)

Registered: 09/27/12
Posts: 145
Loc: Australia
Hi Lyn,

My wife was also treated by the team at Royal Melbourne and I must say they have been fantastic to date.

I agree some of the surgeons can be pretty stuck up but based on several discussions and meetings with them throughout our treatment + the results of the surgery itself, they were probably the best option by far here in Melbourne.

I agree though there is a huge void between moving between the Royal Melbourne & Peter Mac where we are currently undergoing Radio & Chemo therapy, but generally the detail to attention has been so far so good.

I have heard great things about Cabrini if you have private health care insurance and would definitely see what they have to offer if you are in need of a new team of specialists.


Edited by Jay Jeong (11/03/12 02:59 AM)
_________________________
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away

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#157108 - 11/04/12 02:46 PM Re: Help finding a new GP, New Maxillo, New MOUTH!!! [Re: LynfromOz]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4976
Loc: Toronto canada
I wish I could comment not the drs. Unfortunately I live in Toronto... However you have a similar health system - not sure if this would work for you - but research. Get online. Talk to people in the know - look for a top notch ENT in your area then request a consult via your GP. The ENTs in my area are quacks for the most part, except for my back up guy who comes highly recommended from the head of the hospital here - I go to him for any immediate problems or small tags but my main guy is in Toronto. I can tell you when I was being treated here at PMH, my dr. there was training a young surgical ENT from Australia - my dr. trains international drs, and only picks one every 8 mos to teach them a technique he pioneered for treating oral cancer - so you have to be the best of the best to be chosen - anyway he left frown to go home to Australia - he was super nice, and very talented. I have NO idea where he ended up but he's in your country somewhere (not much help I know) his name is dr. Gundulac. Otherwise best of luck - and yes thrush can be painful and very resistant to treatment. Stay away from sugar as much as possible that may help. smile hugs.


Edited by Cheryld (11/04/12 02:50 PM)
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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