Questions

I compiled this list of questions for my surgeons before my all-in-one surgery in August 2011: mandibulectomy, fibulectomy and mandibular reconstruction.

You can read my wonderful surgeon’s comprehensive answers in three parts:

GETTING INFORMATION

  1. Could I have another consultation before surgery?  I’m scared and don’t feel like I have all the information I’ll need.
  2. When will you be able to to tell us how the surgery has gone?  If you can’t see me, can you phone or meet with my husband?
  3. Will you do follow up checks with me in hospital?  Will other doctors do follow up checks?  For what and how often?

DIAGNOSIS

Ameloblastoma

  1. How large is my tumour?
  2. What has been destroyed other than the bone?  Do you often see ameloblastomas this destructive of mandible etc?
  3. Do you often see ameloblastomas that have infiltrated the soft tissue?  What does the infiltration of the soft tissue mean?  Will it affect the surgery or prognosis?

Biopsies

  1. What does the pathologist in the second biopsy mean by: “a suggestion of basal palisading certainly prompts consideration of a residuum of an ameloblastomatous process”?
  2. The pathologist in the second biopsy wrote that the tumour has “a somewhat basaloid appearance, apoptotic cells are seen and scattered mitoses”.  What does this mean?  Is this the same as the pathologist in the first biopsy saying my tumour “exhibits basaloid features with evidence of apoptosis and occasional mitoses”?
  3. The pathologist in the second biopsy wrote, “Overall the radiology had a somewhat aggressive appearance which could fit for a large ameloblastoma.”  However, they also said, that the tumour’s appearance is an “unusual finding in a straightforward benign ameloblastoma”.   What other diagnoses could the tumour’s appearance fit with?
  4. The pathologist in the first biopsy said “unequivocal malignant features are not observed”.  The pathologist in the second biopsy did not see “frank malignant features”.  What would these features have been?  How would they have differed from what the pathologists did see?
  5. The pathologist who undertook the first biopsy said had “done progesterone receptor on the tissue and found it to be strongly positive, raising the possibility of some degree of hormonal effect on this tumour”.  What does this mean?  Does the possible hormone effect suggest another or concurrent diagnosis?

Follow up

  1. In my notes, I wrote “if the biopsy results do not come back as clearly benign, I’ll likely have a CT PET scan”.  Will I still have a CT PET scan?
  2. Is there anything else I can get done to ensure I don’t have other tumours?
  3. When will you get the results of the pathology on the removed tumour and mandible?  What will you do if you find malignancy?  What will you do if the tumour is not clearly benign?

SURGERY PREPARATION

  1. Will I need more tests or scans before admission to hospital?
  2. When will the blood tests, chest x-ray and ECG noted in my hospital admission paperwork take place?  Before or after surgery?
  3. Is there anyone else on my medical team that I could/should meet before my surgery?
  4. Is there anything else I should be doing to prepare for surgery?
  5. How will my surgery be affected if I lose too much more weight?

FINANCIAL

  1. I haven’t received any doctors’ invoices yet?  Whom should I expect invoices from that I’ll need to pay up front?
  2. Will there be other doctors’ invoices to pay after the surgery?
  3. What other in-hospital services will I have to pay for after the surgery?  When?  Can I get an estimate?

SURGERY

Surgeons

  1. Who will be involved in the surgery other than Dr P and Dr A?  What is their role?  Do I pay for them in addition?
  2. Who does the tracheostomy?

Fibulectomy and fibula flap

  1. What do you learn from my doppler ultrasounds on the artery and vein in my legs?
  2. Do you take the whole fibula?  What happens to the joints or bone parts that remain?  Do you take muscle with the fibula?
  3. How will you know if the fibula flap is failing?
  4. How much will I be able to move with my jaw wired?

Mandibulectomy

  1. How will you know if you have removed all the tumour?
  2. What will you do if you can’t remove all the tumour?
  3. How much of my soft tissue will you remove?  What will be the effect on my face?

HOSPITAL STAY

In-hospital care

  1. Can I meet the dietitian who’ll be looking after my NG tube etc before my surgery?  I am concerned about my weight loss already.
  2. Will there be a clinical nurse specialist assigned to me in hospital?  Can I ask her questions beforehand?
  3. When will I be able to get out of bed?

In-hospital recovery milestones

  1. What will you look for to determine I am able to move from ICU to my own hospital room?
  2. What will you look for to determine I can have the tracheostomy removed?  How long is it usually left in?
  3. What will you look for to determine I can have the nasal feeding tube removed?  How long is it usually left in?
  4. What will you look for to determine I am able to be discharged from hospital?

In-hospital tests / procedures / tubes

  1. What tubes etc will I wake up with?  Are there any I might not be aware of?
  2. What blood tests will I need after surgery?  What is their purpose?  How often?
  3. I have a needle phobia.  A PICC line was suggested.  What are the pros and cons?  What would I need to do to organise?
  4. How is the tracheostomy removed?
  5. How is the NG tube removed?

HOME RECOVERY

Consultations

  1. When will I have follow up consultations with my surgeons?   When?  What will they be looking for?
  2. Will I have follow up tests?  Which tests?  When?  What will they be looking for?

Comments

  1. Don’t forget to ask questions about the prognosis afterwards (if you want to know of course). How often does it come back in other parts of your jaw and are there indicators that make this more (or less) likely in your case? I assume this is based on them thinking they have cut it all out with a wide margin but if the tumour developed in one place, is there a chance of it popping up in another place of your jaw as well? How often will you have follow up scans?

    Maybe these are just my questions, rather than yours…

  2. Perhaps a focus on the area of recovery may help lessen thoughts of “oh my God surgery …..!” things such as dietary supplements , vitamin C etc. and physiotherapy , speech therapy ….. a book deal ? as you clearly have a gift for writing/typing !

  3. Thank you for sharing your journey. I was diagnosed with low grade central osteosarcoma in December and will have to have a similar surgery. There is very little information about recovery online, so I’m extremely thankful for your blog. It’s very real. Best of luck in your follow up surgery this week.

  4. Meg, thank you. I’m glad to have helped.

  5. sherrie meadors says:

    Hi, just read all of your info.Thanks for sharing.I was diagnosed about 2 weeks ago with Ameloblastoma.And my oral surgeon is sending me to see a Dr. Robert Marx in Miami, Florida.On Feb 7. I live in Tampa, Florida.I am so very scared.They said it has gone into my sinus cavity as well.Have already had all the x-rays & CT Scans. Dr.Marx is supposed to be a renowned surgeon specializing in this kind of surgery.Could you please kinda tell me what to expect from seeing the special surgeon, then surgery, then recovery time.Any help would be greatly appreciated.Thank you so very much. =)

  6. Hi Sherrie. I know it can be scary, but I am sure you are in very good hands. I hear that Dr Marx has an excellent reputation. Even better than hearing from me (the treatment in Australia is a bit different to the US), you should hear from others in the US who not only had ameloblastoma but were treated by Dr Marx! I can’t emphasise enough that you will get wonderful support from the Ameloblastoma group on Facebook. Click on http://www.facebook.com/tmguillory?ref=profile#%21/home.php?sk=group_154326351301307&ap=1 and ask to join (it’s a closed group so people can share openly). I’ll let them know you are coming. If you have any problems joining, just contact me again. See you on there. And stay strong. It’s tough but we’ve all been through it and you do get through it.

  7. Kirsten , just for interest I thought you may like to read this article …. may I say I am so impressed by your recovery in every way : inspirational .
    http://www.gizmag.com/first-3d-printed-lower-jaw-implant/21383/?utm_source=Gizmag+Subscribers&utm_campaign=fcea4be748-UA-2235360-4&utm_medium=email

  8. @Andrew This is amazing. My surgeon did say that bone grafts are better because they grow and change with your body. I wonder what he’d think of these implants.

  9. Hi,

    I am looking ahead to the same procedure to get rid of the Amelo on my mandible. I was wondering how the lack of a fibula after harvesting affects your life – mobility, energy, ability to chase after your daughter, keep fit? Just one of the many things that scare me about the coming months.

    Cheers

    Barry

  10. Hi Barry. Sorry to hear that you’re up for this merry-go-round too. Losing my fibula really hasn’t been an issue at all. I really don’t think about it. I had physio for quite a few months, but stopped when my physio went away over Christmas. In the longer term – I’m 6 months post-op – the impact you’ll really notice is on your jaw and lip. My sensory nerve (IAN) was removed and my movement nerve (mandibular branch of the facial nerve) compromised in my surgery. There is still some hope I’ll get movement back in my lip, but at this point, it’s just that: hope. My face looks, feels and reacts differently and it’s hard to adapt. Does that help?

  11. here i was searching online for information on something else and i switched to images and saw a pic of you showing the redness from your trach site and thought, gosh her neck scar looks just like mine and clicked on the link… although the reason for my surgery is slightly different than yours it seems the “repair” is quite similar… i had a pindborg tumour, supposedly rare with a 5% chance of occurring and even 5% of that happening on the upper jaw which is where mine was, for me the time between removal of the tumour and the reconstruction was approx 10 yrs (was going out of province and needed approval from saskhealth) i am from canada by the way… for me what they did was place implants in my fibula while still in place (they call this the rohner procedure), remove it 2 months later and graft it into the space left behind by the tumour… this started in april of 2010 and i’m now coming up on my 5th surgery next month, i wouldn’t mind discussing more of the details with you and find how you are managing as well if you don’t mind

  12. i also asked to join the facebook group as well

  13. @Sherry – Hello! I think you’re the second person I’ve heard from with a pindborg tumour. That’s amazing that you didn’t have your reconstruction until 10 years after the tumour was removed. All-in-one surgeries seem to be the go here in Australia. Of course, they did remove 10cm of my lower jaw bone (mandible) and they needed to put something in there with the plate to hold me all together. I’m more than happy to chat: email me at marsupialmum at gmail dot com or I’ll find you on the Facebook group.

  14. Barry Hay says:

    Hi Kirsten,

    Thanks for your advice regarding the leg. I suspect I am about to find out about it much faster than I expected. After enucleation back in December where the analysis of the removed tissue gave the diagnosis of amelo, I’m now certain I have another one growing. I have an appointment with my OMFS next Wednesday. I expect the outcome will be to move surgery forward to first available slot. I get an OPG Xray then which will give the diagnosis, but I’m in a state of shock and disbelief – in all the reading I’ve don recurrence was in the period of years, not 13 weeks.

    Cheers

    Barry

  15. Hi Barry

    If you have any worries, you should raise them with your surgeon as soon as possible. My surgeon is happy for me to call him when I have questions.

    It worries me that you have only had enucleation. That’s pretty much accepted to be ineffective against ameloblastoma. Resection surgery with wide margins (1.5 to 2cm) is considered the only response. As my surgeon said, it’s an aggressive tumour and the response must also be aggressive. If you’ve only had enucleation, my understanding is that it’s not a recurrence because it was never removed in the first place. Did your surgeon explain why he wasn’t pursuing a resection?

    Resection sucks, don’t get me wrong. But it’s sure better than the alternative.

    Kirsten

  16. Barry Hay says:

    Hi Kirsten,

    Thanks for the quick response. Resection was always part of the picture. The enucleation was only done on the initial ‘cyst’. As soon as pathology confirmed it as amelo, we started planning for the resection. But my son is getting married later this year so my OMFS considered I should be OK until then. But now the new Amelo seems to be growing quite rapidly I expect we will move the surgery to first available slot. I guess I will have a good excuse not to dance at the wedding. It is hard to measure things with the tip of the tongue, but I’m not sure a 1.5cm margin in the original amelo would have caught the new one.

    I did get a second opinion from another OMFS at another hospital – he wanted to just grind out the hole in the jaw and treat with Carnoy’s solution, Having read every scientific paper I could freely access on the internet (most are behind pay walls – don’t get me started on that) I knew that was crazy talk, and I couldn’t get out of there fast enough.

    Now time is dragging so slowly to my appointment on Wednesday.

    Thanks for listening.

    Cheers

    Barry

  17. Oh yes, I remember you now!

    You mean there is another amelo on the other side of your jaw? Wow, that is tough. Recurrence only applies if it’s the same amelo coming back, as I understand it. A second amelo is a whole new ball game.

    You sound totally on top of it. And that’s all we can do on our side: pick a great surgeon and keep on top of all the information by reading and asking lots of questions. Have you had an MRI yet? The CT scan gives them some information but the MRI gives much better information. Press for one: it’s $400 and nothing back from Medicare, but worth every cent.

    I so get the time dragging. This has been a long, long year… and it’s not even a year since my initial diagnosis…

    Kirsten

  18. Natalie says:

    Hi there I am having my titanium plate removed soon and I was wondering how long did it take for the swelling to go down completely?? I had my ameloblastoma removed last year in march … I hate all this swelling 😦

  19. Hi Natalie. It takes a few months, perhaps three months. Most of the swelling goes down in the first month. Hope you’re doing well.

  20. My uninsured 22 yr old nephew needs this surgery. Do you know of any foundations, support groups, and/ or financial assistance avenues I can direct him to?

  21. Mojisola Anipole says:

    Hi! Had ameloblastoma with a recurrence after 16 yrs.done a resection wit titanium plates but had complications cos d plates got exposed due to pressure. Now , am rescheduled for another surgery.Your blog has given me an insight on re overy journey. I have also joined the Facebook page to share and know more. Thank you for sharing

  22. Hi Kathy. In Australia, you can have this surgery in the public hospital system and it is covered by Medicare. (I chose, for reasons I explained in a post, to have the surgery done in the private hospital system.) I’m not sure about the situation elsewhere but you could try the facebook group for assistance.

  23. Hi Mojisola, glad I could help. Hope you’re recovering well.

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