Countdown continues

The countdown continues.  Two days to go.

I’ll be admitted to hospital tomorrow (Sunday) at 2pm.  I have a sneaking suspicion they’ll want to jab me a few more times just for fun.  I’m considering taking a sign, Frazzled Patient: Do Not Approach Without Emla.  Too much?

We had our last consultation with Dr P yesterday.  He’s grown on me, you know.  He’s been terribly thoughtful in his own way.

We took along the MRI and OPG scans that we’d picked up on the way.

(In a little episode typical of our experience of the hospital’s administrative prowess, they hadn’t packed the scans for me to take and then the receptionist told us the radiologist’s report wasn’t done.  That was fine, she assured us, she’d post it out to me next week.  Seriously?  But I digress.)

He took a quick squiz at the scans. He’ll study them over the weekend, he said, as will Dr A.  He expects to remove my mandible (lower jaw bone) all the way up to the occipital condyle, just under my cheek bone, and all the way down to my left bottom canine tooth.  He’d like me to keep the canine, but he thinks I probably won’t.

It sounds ugly, but really that’s only another two teeth to go now.  I didn’t have a lower left wisdom tooth.  The next tooth was sacrificed on the orthodontic altar for braces when I was 14 or 15.  Another molar required only a little encouragement to go during my first biopsy because Blaster had eaten its roots.

He very much doubts he’ll need to do a lip split.  My neck dissection will run from my ear under my jaw to my chin.  That should give him enough access, as well as removing the first two levels of lymph nodes.

Another patient from the waiting room kindly came in to demonstrate Dr P’s fine needlework.  He’d had similar surgery nine or so months ago.  The scar was visible and the skin a little saggy around the jaw, but didn’t look too bad.  He couldn’t open his jaw more than 2cm and that’s usual after surgery, said Dr P.  Most people, but not all, can open their mouths 3.5cm, so it takes some adjustment.

I will definitely lose the inferior alveolar nerve, he clarified, but I may also lose the mandibular branch of the facial nerve.  The IAN is responsible for sensation in my lower lip and chin.  The mandibular branch of facial nerve communicates with the muscles for movement.  A quick google reveals this nerve may be injured during neck dissections.  A good one to keep your fingers crossed on.

What makes my surgery trickier though is my size, for a couple of reasons.

First, he told us while squeezing my cheeks, I have a small facial structure and there’s very little flesh on my facial bones.  They’ll bulk it up as much as they can with the fibula flap.  Removing some later (debulking) is an option, but adding is not.  It also means the titanium plate will leave me with a slightly squarer jaw and I’m more likely than most to feel it when I press my face.

Second, my fibula will be slighter than most.  Seeing it on the scans is not the same as holding it in his hands.  It’s a call for the day whether they take more of the fibula bone and do some complex doubling over trick to make the reconstructed jaw sufficiently solid.  It will just be hanging around in my leg with no purpose anyway.

Third, my internal plumbing will be fiddly.  They’ll have it blown up on the big screen, but my veins and arteries will be more fine and the micro surgery more precise.

Fourth, and this was no more than a passing comment as we had one foot out the door and mentioned my chat about blood transfusion with Dr K, I’m more likely to need a blood transfusion.  Indeed, we left with the impression that a transfusion is more likely than not.  On a person of my size, it doesn’t take a large blood loss to be a good percentage of my blood volume.  Yippee.

He seems cheerful and ready to go.  As am I… almost…

Tubes

My lovely anaesthetist called tonight.  Dr K looked after me for my second biopsy and I requested her again.

She’ll have put in four lots of tubes that will stay in after surgery, she said.

First, there’s the central line that goes into a vein and sticks out somewhere in my neck or collar bone.  She will use the line to monitor venous pressure (blood pressure in my veins) and give medications.  As a bonus, they will also be able to use it to take blood for my daily blood tests.  It won’t stay in long and will be removed before I’m moved up to the ward, if not earlier.  To remove it, the nurses just pull it out.  That’s going to be fun.

Second, there’s the line that goes into an artery and comes out through my arm or wrist.  She’ll use it to keep an eye on my arterial blood pressure.

Finally, there’s the urinary catheter (‘nough said) and the nasogastric tube that will feed me.

She ran me though some of the other possibilities.  I may need blood pressure medication after surgery.  She may sedate me over the first night.  The preference is to keep me in a half-awake state, but sedation may help my recovery.

And – the big one – there is a small possibility I may need a blood transfusion.  She will only do it if they need to save me life, she assured me (all in favour, say aye).  The good news is my red cell count is very good.  They’ll have blood ready for a transfusion on hand, already tested against my blood to make sure it’s a good match.

Three days to go.  We see Dr P, my oral & maxillofacial surgeon, tomorrow to run through my recent scans and answer any last questions.

Reconstruction

On Monday afternoon, we headed out to see Dr Amiable, my plastic & reconstructive surgeon, for another round of twenty questions.  He cheerfully gave us more than an hour and a half of his time.

Dr W also joined us but mainly to listen.  He’s an Advanced Fellow in Surgery who assisted on my second biopsy and will be in on my surgery.

Surgery

My surgery will be on Monday 1 August, starting around 8am.  I’ll have been admitted the day before, Sunday 31 July.

There will be 10 or so people in the operating room for much of the 10 hours that the surgery should take, he told us.  That’s my oral & maxillofacial surgeon Dr P, my plastic & reconstructive surgeon Dr P, Dr W, two other members of the plastic surgery unit, and the anaesthetist.  Then there’s a couple of surgical nurses and two scouts, who fetch anything needed so others do not have to scrub out and in again (an efficiency measure).

My oral & maxillofacial surgeon, Dr P, will kick off proceedings.  He’ll be doing the mandibulectomy.  That’s the removal of my jaw bone (mandible) and surrounding tissue to extract the tumour.

They won’t know the exact size of the ‘defect’ left until this is well underway, Dr A said.  That’s when he’ll join the proceedings, probably around midday.  He’ll have a look at the work Dr P is doing on my neck and work out the exact amount of bone and tissue needed for the reconstruction.

Dr A will take about two-and-a-half hours to ‘raise’ the fibular flap and about an hour to shape it around the titanium plate to fit the ‘defect’ in my jaw.  The shaping mainly takes place before the fibular artery and vein are detached.  This limits the ischemic time, the time between the interruption and reestablishment of blood supply.  Once he detaches the fibular flap, he will take a bit under an hour to connect it up by microsurgery in place of my jaw bone.  They have six hours before ischemic time becomes a problem, he assured us, so not to worry.

Finally, they’ll take about two hours to close up the wounds in my head and neck and in my leg.  Dr P likes to hang around for the whole surgery, he said, and may help with the closing up.  He’s unusual this way (unusual in a good way).

Fibulectomy (removal of calf bone)

They will only take the centre part of my fibula, Dr A said.  The fibula is in the deepest muscle in the leg and this just closes up over the bone stumps.  And no. they won’t insert any plates or pins in my leg, unless they need to take bone closer than 10cm to the ankle and then they’ll insert screws to prevent my ankle becoming unstable.

They use a bone graft rather than a prosthesis (synthetic material) because it heals faster, it is resistant to infection and it won’t loosen.  The fibular flap is a vascularised bone (with its own blood supply), he reminded us, so the bones unite in only six weeks.

My ameloblastoma has a good degree of soft tissue involvement.  In reconstructing the inside of my mouth, he may have to use skin taken from my calf and sew this inside my mouth.  Yes, that’s right, external leg skin inside my mouth.  Initially the skin has hair but, he said, the cells adapt and become more suited to their new purpose.

If he takes too much skin to be able to close up the graft site in my calf, he will use a split skin graft.  He’ll take another skin graft from my thigh or buttocks, he told us, and use it to close up the calf.  On further consideration, he thought the buttocks a better proposition: it will be more uncomfortable initially but won’t be visible in swimmers or shorts.

To recap: that’s hairy leg skin in my mouth and butt skin on my leg.  And they say dignity goes out the window in child birth.

I’ll also be left with numbness at the scar site on my calf.  The scar will start off quite dark and lighten over time, not quite to the colour of my skin.  I may also have some knee and ankle instability.

Here’s the diagram he drew for me of the process.  At the bottom, that’s the fibular flap shaped around the titanium plate (that ressembles a bike chain), with the skin graft below and the vein and artery attached above.

Diagram by Deva - 18 July-Edit.jpg

Mandibular resconstruction (jaw bone)

As Dr P said, they aim to over correct with the soft tissue reconstruction of my face.  Not the bone, they aim to get that just right (good idea, I thought).  It seems the soft tissue can take some time to settle, especially with the swelling from the surgical trauma and removal of the lymph nodes.  Over-correcting does mean that, six months later, I may still have trouble manipulating my tongue and jaw to speak and eat.  At that point, I may need some ‘debulking’ surgery to remove excess soft tissue and improve function.  At three months, he assured me, he will tell me to be patient.

They will undertake the reconstruction through the same incision as the mandibulectomy.  This definitely involves a long linear incision through my neck, but could also involve a ‘lip split’, an incision from the middle of my lower lip down my chin.  This is good for access during surgery but not so attractive after surgery.  And, he said, it’s Dr P’s call.

The incision scar will begin a purple or pink colour, turn red for around six months, then eventually fade to white.  It will thicken after surgery but thin over time.  I’ll be shown how to massage and rub silicone into the scar to aid healing.

The titanium plate, around which they shape the fibular flap, will remain in my jaw.  It’s shaped like a bike chain and I may be able to feel the bumps through the skin when I wash my face.

What if the flap fails, I asked.  Simple: they’ll do a new graft from the fibula on my other leg.

And if the final pathology shows the mandibulectomy did not get a clear margin around the tumour?  They plan to take a 2cm margin of ‘good’ tissue around the tumour.   They also hit some samples of soft tissue with liquid nitrogen and send off these ‘frozen sections’ for examination and feedback from a pathologist during the surgery.  Even with these precautions, the final pathology on the decalcified bone after surgery may mean they go back in to remove more bone and tissue.  In that case, they do not harvest more fibula for the reconstruction and work with what they have.  The result may be a skewed jaw.

Recovery

After the surgery on the Monday, he will probably visit me on the Wednesday morning and on the Friday.  I’ll also have follow up consultations with him about one month post-op, then every three months for the first year.

The first three to five days are crucial for the fibular flap.  Over those first three days, they will check the colour of the flap every hour.  If the artery blocks off, it will turn white.  If the vein blocks off, it may swell and turn purple.  They may do a radioactive bone scan, as Dr P indicated, but that’s done while I’m in my bed in the intensive care unit.

The swelling will be massive.  There’s a surgical trauma for a start, compounded by the removal of first two levels of lymph nodes, one of the body’s drainage systems.  The disruption to ‘lympathic flow’ causes lymphoedema: localised fluid retention and tissue swelling.  It can take two to three weeks for the body to create new drainage paths.  Massage will help.

I’ll have staples in my neck for a week to 10 days.  The drain in my neck will likely be open and leak over the first few days.  Dr P, he said, is a big fan of the open drain.

I’ll have a half plaster on the back of my calf.  It’s not a full plaster cast because of the swelling.  There will be dressing on the exposed graft site.  Nurses will change the dressing daily, coming to my home after I leave hospital.  I may convert to a plastic splint on the back of the leg after a week.  I should be able to run three to six months after surgery.

The big question, of course, is how much of what I experience after surgery will be temporary and how much will be permanent.  The swelling can take six months to go down.  The way my leg and jaw function, he said, will never be the same.  The way my leg and jaw look will never be the same.

And, he said, this surgery is not routine.  It’s a long and complicated surgery.  My thoughts exactly.

Q&A: Recovery

This is the final post in the three part Q&A series with my oral & maxillofacial surgeon, Dr P.

I have a pre-op consultation today with my plastic & reconstructive surgeon, Dr A.  I also have a pre-op consultation tentatively scheduled with Dr P on 30 July, the day before my likely admission to hospital.

Q&A: RECOVERY

In hospital

What tubes etc will I wake up with?  Are there any I might not be aware of?

  • Arterial lines
  • Venous lines
  • Tracheostomy tube
  • Urinary Catheter line
  • Neck drains
  • Leg drains

We reserve the right to place any other lines necesary for your health and monitoring

What will you look for to determine I am able to move from ICU to my own hospital room?

Flap viability, respiratory status, general medical condition

What will you look for to determine I can have the tracheostomy removed?  How long is it usually left in?

Flap viability, respiratory status, general medical condition. Generally left in for 1-2 weeks

How is the tracheostomy removed?

The tracheostomy is removed in the ward by myself or another doctor. You will have tests done before to make sure you can breathe when we remove it. [Excellent idea.]

What will you look for to determine I can have the nasal feeding tube removed?  How long is it usually left in?

Flap viability. We will remove in 1 week if able to tolerate oral feeding.

How is the NG tube removed?

The NG tube is removed by simple back pressure on the tube. Similar to the Urinary catheter.

When will I be able to get out of bed?

We encourage ambulation to minimise complications. If you have a skin graft we also like a period of immobility of 4-8 days so the graft can become adherent to the underlying tissue. Generally bed for 4-7 days, sitting out of bed thereafter, weight bearing slowly with a frame then assisted walking over 2-4 weeks.

What will you look for to determine I am able to be discharged from hospital?

Flap viability, tissue health, general medical condition

What blood tests will I need after surgery?  What is their purpose?  How often?

Daily blood tests to determine your status of recovery or illness. Similar with ECG or chest x ray.

I have a needle phobia.  A PICC line was suggested.  What are the pros and cons?  What would I need to do to organise?

We will place the major lines while you are asleep. Pro’s are less smaller needles and the ability to hydrate you with blood or fluid as necessary. You do not need to organise anything.

UPDATE: To clear up the confusion, he means the needles will be fewer in number and smaller in size.  He has also said that the IV line they use requires a lot less injections.

At home

When will I have follow up consultations with my surgeons?   When?  What will they be looking for?

Weekly follow up for 6 weeks. We are looking for infection, non union of the jaw, mal union of the jaw. Thereafter monthly/ 3 monthly visits

Will I have follow up tests?  Which tests?  When?  What will they be looking for?

Follow up radiographs, OPG, CT. We are reviewing integration of the flap.

Q&A: Surgery

This is the second in the three part Q&A series with my oral & maxillofacial surgeon, Dr P.

I have excluded the questions about costs and invoices.  In case anyone wonders about my ability to count to 45.

Q&A: SURGERY*

Surgery preparation

Will I need more tests or scans before admission to hospital?

It would be required to meet Dr L (Physician) to establish baseline Respiratory and Cardiac Function. The Anaesthetist will be advised of your admission and will view your results. Generally you will,have daily blood tests, ECG and Chest x ray in ICU. Thereafter daily or 2nd daily blood tests on the ward. [Yippee]

When will the blood tests, chest x-ray and ECG noted in my hospital admission paperwork take place? Before or after surgery?

The pre op tests will be done approximately 1 week before in the University Preadmission clinic.

Is there anything else I should be doing to prepare for surgery?

Refrain from Smoking, Alcohol, The use of blood thinning agents like anti inflammatories and Aspirin. Advise the medical staff if you have any unusual medical conditions, taking drugs or pills and any allergies. Exercise prior to surgery is OK. Do not chew hard food lest the mandible fracture and get infected.

How will my surgery be affected if I lose too much more weight?

It is not unusual to be catabolic after surgery. We would suggest pre operatively to put on weight by a high caloric diet.

Surgeons

Is there anyone else on my medical team that I could/should meet before my surgery?

I think he missed this one.

Who will be involved in the surgery other than Dr P (oral & maxillofacial surgeon) and Dr A (plastic & reconstructive surgeon)?  What is their role?

Dr XX may be involved in the surgery. He is a Head and Neck Surgeon and I will advise you of his availability. Dr XX is the Advanced Fellow in Surgery. Dr XX and Dr XX are members of The University Cosmetic and Plastic Surgery Unit and may be involved. Our roles are multi disciplinary in that we all look after you in respect of your surgery and progress.

Who does the tracheostomy?

Dr XX, myself or Dr XX will do the tracheostomy. All the surgeons above can also do the tracheostomy as required.

Fibulectomy and fibula flap

What do you learn from my doppler ultrasounds on the artery and vein in my legs?

The Dopplers and Ultrasound are done to exclude that the Peroneal artery is separate and stand alone from the Posterior Tibial Artery.

Do you take the whole fibula?  What happens to the joints or bone parts that remain?  Do you take muscle with the fibula?

We take the whole fibula but preserve the distal 10 cm’s otherwise you could develop an unstable ankle joint. We take muscle with the fibula.

How will you know if the fibula flap is failing?

If the fibula flap is failing we see a change in colour of the flap, associated blood indcators like elevated white cell count, high temperature ad tachycardia. You will be unwell if infection sets in. We may organise a Technecium 99 Bone scan 3-4 days after surgery to confirm blood flow to the flap.

How much will I be able to move with my jaw wired?

We wire the jaw for 3-4 weeks for assistance with the healing process. Following this we place elastic bands for 2-4 weeks for partial assistance with mastication and occlusion. You will be fed by a Naso gastric tube for 1-2 weeks. Thereafter a full fluid diet, then a soft diet.

Mandibulectomy

How will you know if you have removed all the tumour?

We would suggest a repeat MRI 1 week before the surgery to give maximum information regarding bony infitration of the tumour. MRI’s do not produce radiation but give exact localisation of the tumour. [This doesn't quite answer my question.]

What will you do if you can’t remove all the tumour?

Your preliminary findings suggest we can remove all the tumour. If the “final” pathology margins suggest we are not clear then we will advise you of a wider clearance needed as a separate surgery.

How much of my soft tissue will you remove?  What will be the effect on my face?

Soft tissue includes,

  • Free and attached mucosa (Gum)
  • Periosteum
  • Buccinator muscle (part)
  • Mylohyoid muscle (part)
  • Associated nerves, blood vessels.
  • Important nerves include Inferior Alveolar Nerve, Possible facial nerve branches including Marginal Mandibular and Buccal nerve

You will have scarring, fullness or depression of facial aesthetic units, alteration of symmetry of face, compromised jaw opening, sensation or movement of the face.

We over correct the deformity and aim to give more fullness than depression of tissue. We may need to undertake repair/revision/reconstruction of tissue or jaw/teeth at a later date.

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?

The pathology will take about 1-2 weeks before the jawbone is “decalcified” to enable the patholoist to advise on margin clearance. We reserve the right to advise you on this and also the need for wider excision.

Will you do follow up checks with me in hospital?  Will other doctors do follow up checks?  For what and how often?

We will do daily follow up checks on you, this includes myself, Dr A, Dr XX, Intensive Care Specialists, Dr L (Consultant Physician) and other Doctors.

Nursing, Dietitian, Speech pathology, Physiotherapy also.

*Disclaimer: He did not have access to my files and his answers are indicative only.

Paperwork and, oh yes, more tests

UPDATE: SSG stands for split skin graft.

The hospital paperwork arrived today from Dr P’s office.  I do find my oral surgeon’s manner of information delivery rather unusual.

It turns out the surgery will be:

Left mandibulectomy (removal of my left mandible, the lower jaw bone over which the tumour is growing)

Fibula flap (removal of my fibula bone, artery, vein and muscle to fashion a new jaw bone)

Upper neck dissection (nice, they need to get in)

Tracheostomy (hole in my throat directly to my trachea so I can breathe without my mouth and nose, needed because of post-surgery swelling), and

SSG (not the foggiest idea – anyone?).

Dr P has also made a few scrawls under ‘pathology tests requested’.  It took a bit of trial, error and googling, but these seem to be:

FBC (full blood count, ooh blood test)

SMAC-20 (chemistry screen to check various chemicals in the blood, ooh another blood test)

ECG (electrocardiogram, to check electrical activity in the heart), and

CXR (chest x-ray).

And here I thought I was filling in some routine paperwork.  When will I have these tests, I wonder?

The consent form Dr P signed also said he had explained to me my condition, alternative treatments available, as well as the nature, purpose, likely results, and material risks of the operation.  I should add those points to my list of questions, I thought.

I popped in a little post-it note to J, Dr P’s assistant, asking her to schedule us for another consultation with Dr P before 1 August.

Any questions you think I should add to the list?  Contributions gratefully accepted.

UPDATE: I have started a new page with questions that I plan to ask my surgeons before 1 August (still to be confirmed as surgery date).

Is this happening?

It is all quiet here now.

There’s the soft sound of watery white noise through the monitor and Alannah coughing intermittently.  My parents have gone home.  Darren has gone to bed.  He isn’t sleeping much or well.

I have a cup of tea and my notes from our telephone call with Dr P this evening.  He listened.  He answered our questions.  He reassured us.  Perhaps it was my initial judgment that was post-haste.

He ran us through the basics to begin.  Ameloblastomas are locally aggressive, destroying much around them but not damaging further afield.  My ameloblastoma is the multi-cystic or multi-locular variety, meaning there is more than one area of erosion of the bone.  Only the unicystic variety of ameloblastoma is treated conservatively.  The other types, including mine, are treated aggressively with resection with a wide clearance.  That’s roughly a 2cm to each side of my 10cm damage zone.

The incidence of malignancy in ameloblastomas is fairly small, he said.  They like to check.  The recurrence rate for benign ameloblastomas is high.  With the aggressive resection he undertakes, however, he thinks the recurrence rate is less than 15%.  I don’t believe we touched on the recurrence rate for malignant ameloblastomas.

The MRI scan enables them to see the difference between the spongy and hard bone.  It showed the tumour had breached through the cortex into the soft tissue.  That, if I understood correctly, is the area of concern on which they will focus their attention in the second biopsy this Saturday.

They will send the biopsy samples to a pathologist for examination under a microscope.  They will look for signs of ameloblastic carcinoma or sarcoma.  They’ll look to see if there is infiltration of the lymph nodes or blood vessels, if there is potential to metastasize (spread to other parts of the body), and how the cells look.

Can the pathologist say for certain?  Will you need a second option?  Malignant ameloblastoma can be difficult to diagnose, he agreed.  The pathologist at Westmead Hospital for my original biopsy is a world leading figure.  He will ask a pathologist at Royal Prince Alfred Hospital to take a look.   The pathologists in this field all know each other and usually like to pass it around to get others’ opinions.  A group of them get together formally every Friday fortnight and may look at it together.

All in all, it’s a lengthy process.  It may take one to two weeks for the results of this second biopsy.  The results of the first biopsy took nearly two weeks.  I won’t know until right towards the end of June.

If the biopsy results do not come back as clearly benign, I’ll likely have a CT PET scan.  Cancer cells, among others, take up glucose and the radio-isotope scan will show if this is happening in my jaw.

Whether they think the tumour is benign or malignant, the treatment is aggressive: resection with a wide margin and reconstruction.  If they still think the tumour is benign but locally aggressive, they will only take our my level 1 and 2 lymph nodes.  This will allow them the access they need to get the fibula flap in through my neck to reconstruct my jaw.  If they think the tumour is cancerous, they will take out the level 3 lymph nodes as well.  These are located below the jaw in the glands.

Waiting on the biopsy results alone and leaving the CT PET scan aside, this brings us right up to school holidays.  Can he be sure that the tumour won’t cause more destruction in that time?  Even if the tumour is benign, could the joint at the top of my jaw not be compromised in that time?

In his 25 years experience in this field, he has only once or twice seen the jaw joint removed.  The tumour has probably been growing for years and he would prefer to wait to have all the information available.  If he is allocated an operating room by the hospital, he assured us, he can operate the day he is back.

That’s mid July.  A month away.

In March 2007, they found a cyst on my right ovary when it hemorrhaged.  It had grown to 10 by 15 cm when they operated to remove the cyst in June or July that year and decided to remove the ovary and appendix as well because the cyst looked pre-cancerous.   It wasn’t, but the danger of delay is on my mind.

It occurred to me that, in preparation for that surgery, I had the blood test for the cancer marker CA125.  While I didn’t have the marker, that wouldn’t exclude cancer here, he said.  (Indeed, a quick google indicates that’s only helpful for ovarian or breast cancer.)

However, he mused, did I know the ovaries were the most common location for tumours?  And did I know the second most common?  Yes, the jaw. Lucky me.

He is happy to see us all before the surgery.  He’ll show us the scans and answer any more questions.  He can also arrange for me to meet the young man on whose malignant ameloblastoma he recently operated.  Yes, I said, I’d appreciate that.

Then somehow, almost as we hung up, the kicker.  Even this biopsy coming back as benign will not exclude malignancy.  Only examination of the full tumour under a microscope can do that.

And on that bright note, we said our goodbyes.

And now for something completely different

Well, not completely different. But with each new doctor comes changes to The Plan.

I can’t remember quite how Dr Amiable and I kicked off.  I had expected he would know why I was there.  Perhaps I had hoped.  I certainly hoped he would know more than I.

How can I help you?  You are going to be the plastic surgeon on my ameloblastoma surgery, I said.  Right, said he.

To his credit, Dr Amiable responded well to the situation.  He had, as I said in the last post,  no referral, no scans, no briefing.  He called Dr Post-haste and got some facts under his belt.

Those facts seem to have included that my surgery does not need to take place in the next three weeks.  Apparently it can wait until after the school holidays.  I can understand that he wants to hang around for a while after major surgery.  I’m all for that.

But I’m worried about waiting.  What if the tumour becomes too big for the reconstruction?  What if it entirely eats through my mandible?  What if it compromises the joint at the top of my jaw and complicates the reconstruction?

I am trying to be flexible and roll with the punches.  Really I am. But there is a limit.  This is my life, my jaw, my time away from my daughter.

What I want to do is sit my entire surgical team in one room, talk about the issues and make a sensible plan. They need to work together as a team.  They need to communicate clearly, logically, efficiently.  Yes, the surgery will require finely honed manual skills, clear thinking under pressure and sustained concentration.  Their depth of knowledge and experience is important.  The team does three to four ameloblastoma surgeries a year.  But is a room of super stars enough?

Dr Amiable’s role is the reconstruction of my jaw after the resection.  The resection itself will take about three to four hours.  Dr Amiable will join us two hours in to begin the ‘harvest’.

The harvest is the removal of my right fibula (fibulectomy), surrounding muscle, artery and vein.  They use the fibula on the opposite side to the reconstructed jaw because the shape is better.  The fibula is the smaller of the two calf bones, the other being the tibia.  The tibia will remain and, indeed, should thicken over time to compensate for the lost fibula.

The ‘defect’, as he called it, is 10cm in length.  It’s large.  There are two options for reconstruction: the iliac crest out of the hip or the fibula out of the calf.  They can deal with a defect up to 12cm in length with a fibula flap, he said.  It is preferable the iliac crest which requires a ‘bigger chunk’  of bone.

Technically, it is a flap, not a graft.  He will take the bone with its own blood flow and connect it up using microsurgery to the veins and arteries of my neck.  This means it will heal like a fracture in about six weeks.  A graft takes six to 12 months to heal.  We seem to remember it is also better for dental implants down the track, but don’t quote us on this.

The real danger period is 24 to 48 hours after surgery.  Dr Amiable has never had to go back to the operating table to fix a fibula flap but, if it fails for any reason, it will be in those first few days.  Five days after surgery without incident mean we can breathe a sigh of relief.

He felt the three pulses in my leg.  Foot, knee, groin.  All strong.  Tick.

What will recovery be like, we asked.

The first week will be a haze of pain and pain killers.  The swelling will mean I require assistance to breathe.  This could mean a tracheostomy for the first 24 to 48 hours.  That’s a tube inserted through an incision in my neck directly to the trachea so I can breath without use of my mouth or nose.  He hopes to avoid a tracheostomy in favour of a nasal tube.  I will have a feeding tube through one nostril from 24 hours to a week after surgery.

The second week will be tougher, he said.  That seems to be when you realise the mountain you are facing.  You’re in pain, you can’t talk, there is no end in sight.

My right leg will be in plaster for six weeks after surgery. A week to 10 days after surgery, I’ll be able to get up on crutches. I will have physiotherapy while in hospital and after I go home.

My mouth will be wired shut for at least six weeks. I’ll have speech therapy in hospital.  I’ll learn how to use the lip without the nerve.  I’ll learn how to use my tongue which will be tethered with the scarring.  This comes easier to some than to others.

I’ll have two linear scars: one at the bottom of my neck and one down my right calf.  My white skin will finally work in my favour.  The scar tissue should be less obvious.  While in hospital, I’ll receive ‘scar management’ with my scars massaged with vitamin E oil.

I’ll go home two to three weeks after surgery.  For a while, I will do no more than sleep, go to the toilet, eat, rinse and repeat.  He has a distant memory of looking after an exuberant 10 month old.  That won’t be on the cards until well after I return home.

The real rehabilitation, he said, is six weeks to three month after surgery.  I will continue to receive physio.  I should be walking properly at about three months.  That’s October or perhaps November.

If I do decide to have dental implants, that is not until six months after surgery. Until then, I’ll be missing a good third of my lower teeth.

A long road ahead.  Can we get on it already?

Rhythm

Damage count: one day, three appointments across Sydney, three bouts of tears.  But the delight of three dainty little steps.

It can be hard to strike a balance.  I want to keep busy and keep things as normal as possible.  A normal week for Alannah and me had a soothing rhythm.  We never felt at a loose end, nor were we rushed.

Each morning we had plans: swimming on Monday, mothers group on Tuesday, music on Wednesdays, Grandad day on Thursdays and day care on Fridays.  Each afternoon we headed to a local playground or library.  Rushcutters Bay and Centennial Park were favourites, but we sought out new playgrounds each week.  Watson’s Bay and Double Bay Libraries were also regular haunts and we had just discovered Bondi Toy Library.

I miss the rhythm.  I know I have to make room in my life, but I don’t have to like it.

Sometimes now, I have nothing left to give.  Today is one of those days.  I dozed on and off until 1pm.

With our sights on a late June or early July surgery date, we had crammed yesterday full.  Why not cram in one more appointment or drive all across Sydney so as not to prolong the vagaries of limbo?

First stop 9am: Classroom observation at Montessori East, a preschool in Bondi.

Before this all started, I was looking for preschools for Ally.  She is on waiting lists for the Kindergarten Union (KU) preschools at Paddington and Rushcutters Bay. The day after they found the tumour, I was due to head over to Montessori East for a classroom observation.  That day it was as much as I could do to drag myself out of bed and haul myself off to mothers group. I rescheduled for the next available appointment, 14 June, thinking the worst should be behind me.

Yes, I could have rescheduled again.  But as I look at the abyss of the next four to five months, it’s comforting to picture the greener grass on the other side.  It will be hard going between now and Christmas.

Second stop 11am: CT scan and MRI at Macquarie Medical Imaging, located at Macquarie University Hospital in Ryde.

The CT scan was quick and painless.  The MRI was draining.  I knew about the duration, the cramped confinement, but not the injection of contrast dye.  Not my finest hour, but I pulled through.

And then in the waiting room, Alannah took her first solo steps.  First three dainty little steps.  Later six steps all in a row.  I burst into tears.  Such a precious moment that I wish did not have to take place in a hospital waiting room.

Third stop 3pm: First consultation with my plastic surgeon, Dr A.

Hallelujah, A is for amiable.

It took a little time to get started.  He knew nothing of my case.  He had no referral from Dr Post-haste and no briefing why I was there.  I had no scans as I’d had to hand those over at the imaging appointment.

A quick call to Dr Post-haste gave him enough information to get started.

He took his time with us and did not rush us, despite the bursting waiting room we saw on our departure.  He listened.  He understood our concerns.  He answered our questions.  We would see him again, he assured us.  He would answer our questions.

But with each new doctor comes changes to The Plan.  Not minor changes either.  Perhaps we will not recapture the soothing rhythm of Alannah’s first summer and autumn, but I felt on a roll.  I could handle the new tempo, the impending march towards the surgery.  Now maybe they will delay it until late July.  Is it too much to ask to put them all in one room and thrash it out?

Stay tuned.  Next installment to follow later tonight.  Bath time is over.  It’s time for books and bed for our little girl.

The Plan – Part 2

So that sucked. You can forget Part 1.

And to top it all off, I came out and burst into tears in the corridor. Then again in the car.

I like hand-drawn diagrams to explain the finer points. I like understanding why one option and not the other. I like thoughtful plans.

What we got was ADHD on steroids. That’s Dr P. Let’s call him Dr Post-haste.

He dashed in from surgery and whisked us briskly into his office. It all spewed forth in no particular order. It was breathless. He did not lead us calmly and reassuringly through the process. Each question was dispatched rapidly, with a few anecdotes of his or other patients thrown in for good measure.

And a mere 15 minutes later, he was off back to surgery.  Poof.  Gone as quickly and frenetically as he had appeared.

We sat in the waiting room as the receptionist began making appointments for us. And we jotted down what we remembered.

I’m probably looking at an operation in about three weeks time, the end of June or start of July, give or take. It will be far more like I had originally expected from reading the Ameloblastoma facebook forum.

There will be four of them in there: Dr Post-haste, two plastic surgeons and an anaesthetist. It will take 10 hours and that’s only because they are doing some serious multi-tasking. One lot will be opening up my neck from the outside and resecting the tumour and most of the lower left half of my face. That’s bone, nerve, soft tissue, teeth, two lymph nodes, the lot. Meanwhile, the other lot will be opening up my leg to remove my fibula (calf bone), the smaller of the two bones in my lower leg, together with enough muscle to properly attach it in place of my jaw. Then it will be one big party as they shape the fibula to a titanium plate to replicate as far as possible my face shape and connect it all up.

For those following along with the diagrams, the resection is going to look more like this.  The margin around the tumour he plans to take is more like 2cm than 1cm.  The resection will extend from the cheek bone almost to my chin.  That’s another two to three teeth.  He may well not know until the surgery is underway whether the dotted line segment will be included in the resection.
Dental x-ray showing likely resection

I’ll stay in hospital for two to three weeks.  I’ll receive physiotherapy to learn how to use my weakened leg and build up the muscle.  My jaw will be wired shut for the entirety of my stay in hospital, up to around six weeks after surgery.  In hospital, they’ll feed me through a tube up my nose into my stomach.  I was waiting for the punch line.  No joking matter apparently.  (I am expecting at least one smart one-liner in the comments for this post.  Please don’t disappoint.)

I’m not entirely sure how we make do at home but some on the facebook group recommend taking advantage of the gaping hole left by removed teeth if you get really desperate for real food. It will probably be a month or so before I have good use of my leg again, but stairs are good for you, he assured us.  Yes, even two flights of stairs up to our apartment with no lift.

If all goes to plan, I am hoping against hope that means I will be out for Alannah’s first birthday on Friday 22 July and her party on my birthday on Saturday 23rd July.  I won’t be able to dance around with her or throw her in the air.  I won’t be able to sing to her.  I may not be able to speak to her much.  Now I’m beginning to think this is unfair.  I want so much to be home for her birthday.

It’s time to focus on the little steps.  One by one.

First, Dr Post-haste needs a more detailed picture of the ameloblastoma. That means another CT scan and a 3D MRI scan. Pronto.  That’s scheduled in for this Tuesday morning, 14 June.

Second, we have to meet everyone. The two plastic surgeons will be Dr A and Dr W.  I have an appointment with Dr A this Tuesday afternoon.  I don’t yet have an an appointment with Dr W and the receptionist will call me with the details. Later on down the track, he will refer me to one of his dental colleagues to talk about tooth implants.

Now I know you’re not going to like this next paragraph, but I am not going to hide anything or fudge the truth.  Mum, sit down and take a deep breath.  In what he told us was the highly unlikely case they find malignancy in the tumour, he also wants us to have an initial appointment with someone in the radiation oncology unit.  He will already have removed two lymph nodes close to or compromised by the tumour (I did not catch which) and no further surgery will be needed, but radiation may be.

Scattergun yes, but as Darren rightly pointed out, we did get a lot of information.  I didn’t like the quickfire delivery, but I may just have to suck it up and deal with it.  I need some time to let it sink in.

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