Timeline

The big dates

9 May 2011: Tumour first diagnosed.

30 May 2011: First biopsy, Westmead Hospital (public).  Surgeon was Dr S.  Tumour diagnosed as ameloblastoma.

18 June 2011: Second biopsy, Macquarie University Hospital (private).  Surgeon was Dr P, together with Dr W and Dr K.  Ameloblastoma very likely not cancerous.

1 August 2011:  Mandibulectomy, fibulectomy and mandibular reconstruction (12 hours), Macquarie University Hospital, Lead surgeons were Dr P (tumour) and Dr A (plastics), together with Dr H, Dr W, Dr S and Dr K.  Ameloblastoma removed and not cancerous.

23 September 2011: Removal of arch bars, Macquarie University Hospital (private).  Surgeons were Dr P and Dr W.

13 January 2012: Removal of titanium plate, Macquarie University Hospital (private).

Phase 1: Inital diagnosis (May to June 2011)

25 March 2011: Sore tooth in left posterior of jaw.

8 April 2011: Spoke to my dentist about sore tooth at my 6 monthly checkup.  Advised to ensure flossing all the way to back.

6 May 2011: Felt unusual lump inside my mouth in the cheek and gum area.

7 May 2011: Consulted doctor who prescribed antibiotics for dental abscess.

9 May 2011: Consulted dentist and sent for dental x-ray (pano or OPG).  Referred to my first oral & maxillofacial surgeon, Dr S, for consultation that afternoon.  Tumour identified in my lower jaw bone (left mandible), most likely an odontogenic keratocystic tumour (OKCT). First CT scan.

24 May 2011: Pre-op appointment for biopsy. Tumour now more likely a unicystic ameloblastoma.

30 May 2011: First biopsy by Dr S and Dr D at Westmead Hospital.

31 May 2011: Started this blog.

6 June 2011: Tumour diagnosed as ameloblastoma, the worst case scenario canvassed with my original surgeon. Pathology report did not indicate malignancy (cancer).

10 June 2011: Referred to a second oral & maxillofacial surgeon, Dr P, who has greater expertise in this type of tumour.

Phase 2: Surgery preparation (June to July 2011)

11 June 2011: First consultation with my new oral & maxillofacial surgeon, Dr P.

14 June 2011: MRI and CT scans.

16 June 2011: MRI scan showed the tumour had features ‘atypical’ of a benign ameloblastoma. Second biopsy arranged urgently to examine the expansion of the tumour outside the cortex into the soft tissue.

18 June 2011: Second biopsy, this time by Dr P at Macquarie University Hospital.

28 June 2011: Pathology report from second biopsy indicated tumour had features ‘unusual’ in a ‘straightforward benign ameloblastoma’, but not ‘frank malignant’ features.

1 & 6 July 2011: Doppler ultrasounds (venous and arterial) on my legs.

8 July 2011: Consultation with my speech pathologist, Dr C.

18 JULY: Pre-op consultation with plastic & reconstructive surgeon (Dr A).

25 JULY: Pre-admission clinic.  Pre-admission chest x-ray and blood tests.

26 JULY: Consultation with physician (Dr L).  Another MRI and another OPG (dental x-ray).

29 JULY: Pre-op consultation with oral & maxillofacial surgeon (Dr P).

Phase 3: Hospital (August 2011)

31 July 2011: Admission to Macquarie University Hospital for surgery.

1 August 2011: Mandibulectomy, fibulectomy and mandibular reconstruction surgery (what I refer to as my surgery).

1-5 August 2011: Recovery in intensive care unit.

5-10 August 2011: Recovery in ward 4.

Phase 4: Recovery (August 2011 – eternity, I hope)

10 August 2011: Discharge – home sweet home.

13 August 2011: First post-op checkup with Dr P.

15 August 2011: First post-op checkup with Dr A.  Wound maintenance with nurse D (not Darren!).  First post-op CT scan and OPG.

19 August 2011: Second post-op checkup with Dr P.

22 August 2011:  Wound maintenance with nurse D.

27 August 2011: Third post-op checkup with Dr P.

29 August 2011: Second post-op checkup with Dr A.  Wound maintenance with nurse D.

3 September 2011: Fourth post-op checkup with Dr P.

7 September 2011: Speech pathology session.

10 September 2011: Fifth post-op checkup with Dr P.

10 SEPT: 5th checkup Dr P.

12 SEPT: 3rd checkup Dr A. One crutch.

19 SEPT: Physio, speech therapy. Due to come off crutches.

23 SEPT: Braces (arch bars) removed – day surgery under general anaesthetic.

27 SEPT: Physio.

29 SEPT: Speech therapy

30 SEPT: Physio

4 OCT: Physio

7 OCT: Physio

11 OCT: Physio

14 OCT: Physio

18 OCT: Physio

21 OCT: Physio

24 OCT: Speech therapy

25 OCT: Physio

28 OCT: Physio

31 OCT: Physio.

4 NOV: Physio.

7 NOV: Plastic surgeon.

9 NOV: Physio.

7 NOV: Reconstructive surgeon.

9 NOV: Physio.

18 NOV: Physio.

27 NOV: Physio.

2 DEC: Physio.

9 DEC: Oral surgeon.

10 DEC: Physio.

16 DEC: Cone beam CT scan.

16 DEC: Physio.

17 DEC: Oral surgeon.

12 JAN: Admitted to hospital.
13 JAN: Surgery to remove titanium plate from jaw (2 hours).  A few days in hospital.
21 JAN: Oral surgeon.
11 FEB: Oral surgeon.
13 FEB: Plastic surgeon.

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Comments

  1. Rinkly Rimes says:

    When I read of your troubles I am constantly reminded of people I have seen on TV who have had facial surgery. I always gasp ‘But you wouldn’t think they’d had anything done!’ It’ll be that way with you, too.

  2. it is my hope that recovery will be even better than anticipated. You have a difficult journey and I admire both you and your supportive family!

  3. My daughter is going in for surgery next Friday, September 30th, for-what sounds like-the same situation. Her tumor, unfortunately, is extremely expansive. Most of her jaw has been consumed by the tumor. She has barely any jawbone left; a mere hairline of bone. The surgeon said it wouldn’t take much to break her jaw, so we’ve bubble-wrapped her whole head. (Just kidding!) Sadly, she’s only 8 years old.

    After reading all of the information that you’ve posted, I’m grateful that you’ve taken the time to educate others about your personal journey. I wish you the best in your full recovery! We’re bracing ourselves for our own.

  4. Hi Kimberly

    I’m so sorry to hear your little girl is in the same situation. I can’t imagine how tough that must be – the idea of my little girl going through anything like this is just too awful.

    If you’re on facebook, you might find it helpful to join the ameloblastoma group (I’m assuming your daughter has that rather than another sort of tumour). If it can possibly happen, one of them has experienced it (especially Tina – she’s had every complication going!). You can find them here: http://www.facebook.com/tmguillory?ref=profile#!/home.php?sk=group_154326351301307&ap=1.

    Bear in mind that what they do in the United States is different from what they do here in Australia (I’m not sure where you’re located, but I assume the US because you spell tumour without the second u!), as is the insurance system (and the group on facebook have fought every possible fight with US insurance companies so can give you great pointers).

    The size of her tumour sounds very similar to mine. I was told exactly the same thing (I’ve posted all my scans somewhere on the blog). My tumour had consumed pretty much most of my mandible (lower jaw bone) but also expanded into the soft tissue.

    Please come back and ask if you have any questions. And please come back and tell us how you go. I’ll be thinking of you and your daughter next week.

    (I’ve emailed you too just in case.)

  5. Stephanie Crary says:

    I hope your progress has moved forward in a positive manner. I really enjoyed the blog. My husband had this done but it was due to an injury. We are 1 month post surgery and his jaw is making great progress. However, his foot is another story. Lots of pain/nerve issues. How long did it take for your leg/foot to recover to some sense of normalcy?

  6. @Stephanie, hello. I actually don’t remember having pain in my foot. Pain in my leg, yes, but that was nothing compared with the pain in my jaw. I was off crutches after 6 weeks and could walk fairly normally in 3-4 months.

  7. hello Kirsten….i have just had what I think is the same operation that you had….i have search and searched the internet to see if anyone else on the planet has had this…to no avail…until now. I have so many questions I don’t know where to start….also hesitant to put too much out there, if you know what I mean…..are you still at that marsupialmum email address? barbara

  8. Hi Barbara – lovely to hear from you. Please feel free to email me at that address and I will answer if I can.

  9. Barbara Russo says:

    Hi Kirsten: I sent you an email but haven’t heard from you….did you get it? Barbara

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