Phew

UPDATE:  IMF stands for inter maxillary fixation.  The maxilla is the upper jaw bone (actually two bones fused together, I understand).  It’s also the other location apart from the mandible where people get ameloblastoma, although it’s rarer.

We held out hope it couldn’t be an infection.

It seemed too far down the track. I didn’t have the other symptoms. And Dr P wasn’t worried.

But the swelling was sudden and worse two days in a row. The only thing that had changed was massaging my neck dissection scar with bio oil, ten minutes, twice a day. Could that have caused the swelling?

It might just have. Because it wasn’t an infection. Disruption of lymphatic flow, Dr P said.

Phew.

During surgery, as we already knew, they removed the top two levels of lymph nodes in my neck. I gather this is usual during neck dissections to improve access, but it was also precautionary in case there was any malignancy. They also used micro surgery to connect up the artery and vein that formed part of the fibula flap. Now instead of flowing down, Dr P told us today, the blood flowed up and around then down.

The surgery disturbed both of the drainage systems in my neck and jaw: the blood and the lymphatic system. Together with the trauma of surgery, that adds up to a lot of swelling. The body adapts and gradually the swelling subsides.

Dr P didn’t offer a theory as to why the disruption of lymphatic flow caused the sudden explosion in swelling, so we’re sticking with our little theory about the scar massage. I haven’t massaged for the last two days, but will probably start again tomorrow. More gently this time. I want a flat white scar when this is all over, but the swelling has impacted my speech and got very uncomfortable there for a day or two.

The infection drama aside, it was a fun checkup. Two of the speech therapists came in for their meeting with Dr P as I was in the waiting room. F, who saw me in hospital and will continue with me once my jaw is unwired, and C, who saw me the night before surgery in hospital. (Too many Cs I know, just hang in here with me!)

I like getting to listen to specialists discussing me because you learn things you might not otherwise, like my braces are actually called an IMF. I must look that up.

Dr P looked through my CT and OPG scans from last Monday. We’d forgotten them for our last minute appointment last Friday. My new jaw looks to be healing well and shaped well. The titanium jaw is set a little outside the fibula-cum-jaw bone. If at some point the soft tissue settles so much that the titanium plate starts to show through as a bump on my jaw, they can remove the plate. (Another surgery I’ll be hoping to avoid!). The shape of the new bone is what counts and that is looking good.

Everyone has a look at my fibula flap too. Still pink and healthy. The wiring is looking well cleaned and cared for, they commented. A relief because I’d been feeling a bit guilty I may have contributed to my non-infection by not keeping my mouth scrupulously clean.

And this is where I feel a little embarrassed. It’s not like I don’t know people read this blog. I do. Quite a few people, though nothing like the number who read Darren’s posts while I was in hospital. But I write this as much for me as I do to share news. Sometimes more, sometimes less. It depends on what I’m writing about. Often I just get wrapped up in getting it out of my head.

I knew my speech pathologists had found the blog. (Hi.) But they mentioned it in front of Dr P today and he knew. Koala bear or something, he said. Close. I don’t know if he’s read any of it because he’s definitely a man in demand, but now I really am feeling the pressure to get my updates right!

As we left, we saw J in the waiting room and caught up. I’d met him while I was in for the second biopsy and he was three weeks post op for the same surgery. He told me about how he’d coped by challenging himself to stay calm and celebrating the removal of each tube. It was great to have the chance to tell him how much that had helped me.

Onwards and upwards from here on. My next appointment with Dr P is next Saturday and he may, just may, cut my wires. It will be two days short of five weeks post-op. My jaw won’t open much to begin with, but within days, it may open 10 to 15mm. Now that’s something to look forward to. What should be my first non-liquid meal?

Swollen up

I may have an infection in my fibula flap. I started on antibiotics this morning. We are waiting for a call from Dr P, via my local GP, to see if I should get scans today or just wait to see him tomorrow.

Let me backtrack for a moment.

Each morning, I wake with pain. I take stronger pain medications* overnight but, by morning, the effect has long worn off. Darren gets my morning pain medications ready on my bedside table each night, so that I can take them as soon as I wake. The pain subsides fairly quickly, in 15 minutes perhaps, and I get on with my day.

You do get used to it. The pain is manageable and you just manage it. People deal with far worse and, while I know it might sound trite, that keeps it all in perspective for me. I find the burden on Darren far harder to deal with. He is happy to do what he can, even though I can see how tired he is between balancing work commitments and caring for Alannah and me. He often works late into the night and, for the past week or so, has been getting up to Alannah during the night. It is unusual for her to wake in the night, but there hasn’t been much “usual” about her life in the last month. Monday marked three weeks since my surgery and one month since her birthday.

Yesterday morning, however, I woke up feeling like the left side of my face had doubled in size. Darren too noticed the swelling, particularly under my eye. We checked for the symptoms of infection: redness on the cheek or around the lips, fever, feeling unwell. No, only the swelling.

We decided to watch and wait. I iced my swollen jaw, slept again in the early afternoon, and iced my jaw again in the late afternoon. When the swelling had not subsided by early evening, we called the nurses on the hospital ward. We had been told to call if we had any concerns with my recovery after discharge. I still did not have the signs we’d been told to look for, but we opted for the better-to-be-safe-than-sorry route. The nurses called Dr P, my oral and maxillofacial surgeon. He wasn’t too concerned, but said I should start on a course of antibiotics and he would see me on Friday.

Sooner was better than later, we thought. There is a doctor home visit service in our area and a late night pharmacy at Bondi Beach (we would never have known all this a year ago, how things change when you become a parent). However, after more than 15 minutes on hold, we decided to wait until our local GP clinic opened in the morning.

This morning the swelling was worse than yesterday. Darren somehow managed to make it all happen. He is always on the go nowadays. He got Alannah dressed, fed, changed (more than the usual number of nappy changes I gather, just to keep him on his toes) and down to day care. He arranged an urgent appointment for me and delayed his work commitment by half an hour. He got me showered and my wounds dressed on the double. He helped me hobble down to the clinic, stayed with me for the appointment, dashed to the chemist, settled me at home on the couch with everything I might need for the next few hours, and headed off to work.

The GP examined me and looked through the GP copy of my discharge papers that we’d taken with us. She was happy to prescribe the antibiotics that Dr P had requested, but felt a scan was probably in order to be sure what was going on. She left a message for Dr P to see if he’d like her to arrange the scan today. The weekend is fast approaching and, if more than antibiotics are required, it means they can act on it tomorrow. I liked her thinking.

She will call us either way, she said. So we wait. At least, I wait until Darren gets home and we decide whether to follow up.

In the meantime, I am reading Infidel by Ayaan Hirsi Ali. If I need a shot of perspective, her memoir has it by the bucket load. (Yes, the mixed metaphor is appalling but all I have right now, Shaun, before you comment!)

Sadly, this episode also means I will miss my Great Uncle Gordon’s funeral. He passed away on Sunday just three-and-a-half months after his younger brother, my grandfather, my mother’s father, who himself passed away on the morning I was diagnosed with this tumour.

Great Uncle Gordon was the last of the siblings, the other two having passed away much younger. I know he was a much beloved husband, father and grandfather and will be sadly missed. I will be thinking of them today even though I won’t be there.

It occurs to me as I write this that it is the second funeral I will have missed in the past year. My grandmother, my father’s mother, passed away on 25 July last year, just three days after Alannah was born. I contemplated flying to Perth with a ten-day-old baby, but ultimately realised she would have been horrified by the thought.

A friend said that your world becomes very small when you face poor health, in his case the big C. I used to read the paper every day. I tried to remember and ask after the big things that were happening in other people’s lives. My world is now so very small. Doctor appointments, time with Alannah, updating this blog, responding (belatedly) to texts and emails, medications, dressing of wounds, care of scars, eating, sleeping often 12 hours a day.

What I am trying to say is that I find it frustrating how self-centred my world becomes. This blog contributes to that, I know, but it also helps me to get my head around it all and keep on keeping on.

And I am glad I did reach out because your support has helped so much. I can’t thank you enough. It’s so lovely to have you hanging in here with me over this long haul, three-and-a-half months so far.

Darren just called as I was writing. No need for a scan, the GP called to say. Dr P is happy to wait until he sees me tomorrow. A few phone calls later and Darren has arranged the earliest appointment he can get with Dr P at the hospital clinic tomorrow morning. As we hung up, he was off to rearrange his entire day so he can take me.

It just reminds me how lucky I am. Even though my world might be so very small for the moment and I might just be taking it day by day, it does not pass me by how lucky I am. I just wanted to tell you all that, in case it ever seemed otherwise.

*By day, I take dissolvable panadeine. By night, I take a double dose of Pain Stop. It’s a children’s medication, hence the double dose, but adult medications rarely come in a liquid or dissolvable form that you can take with a wired jaw.

Checkups

We just finished our first round of post-op checkups.  We saw my oral & maxillofacial surgeon Dr P on Saturday, then my plastic & reconstructive surgeon Dr A today.

They continue to be amazed at how well I am healing.  And pretty impressed with their handiwork too.  I have definitely grown fond of my little medical team.

Dr P had a look inside my mouth at the fibula flap.  He’s happy with how it’s healing, very happy in fact.

Nevertheless, the wiring of my jaw needs to stay on for the regulation six weeks post-op.  That’s another four weeks.  I’m looking forward to getting it removed, but happy to wait out the wiring to make sure the jaw sets just right.  Removal of the wiring requires day surgery under general anaesthetic.  He assured us he wired it well and oh do I believe him.

He will see us again next Saturday.  In the meantime, he referred us for a CT scan and OPG this week.

When we saw Dr A today, he also had a look inside my mouth at my fibula flap.  All good.  What he really wanted to look at, however, was his fine needlework on my left leg (from the fibulectomy) and neck (from the neck dissection).

He removed the long line of steri-strips from my leg, as well as the few remaining on my neck.  The linear incision on my leg is not entirely healed so there was a little bleeding.  Nurse, he cried.

Before the nurse took me away to do a few bits and pieces Dr A requested, we asked him a few questions.

How long will I stay on crutches, we asked.  He’ll reassess the left leg at four weeks post-op and, all going well, I may be able to put some light weight on it.  At six weeks post-op, I may be able to move to one crutch.  At eight weeks post-op, I could be walking – gingerly – on my own.

What should I do now for pain relief?  We are almost out of oxynorm and panadeine is ok during the day, but does not cut the mustard at night.  He prescribed dissolvable panadeine forte but, as Darren discovered when he tried to fill the script a little while later, that doesn’t exist.  Instead, I’m now on a double dose of ‘painstop for children’.  Oh yeah.  It describes itself as an analgesic syrup with antihistamine.  Just for night-time when the pain is at its worst.

Can I have debulking surgery yet?  He got the joke and laughed.  You may remember he said not to bother asking for debulking surgery at three months post-op because he’ll tell me to wait until six months when the flap has settled properly.

At that point, he sent us on our merry way while he went to deal with real problems.  We’ll see him again in two weeks time.

Our merry way led next door to the nurse.  She cleaned and redressed the left leg wound.  Then she set about the torture section of proceedings.

Some layers of skin around the tracheostomy wound are healing faster than others and showing what they call granulation.  It’s an aesthetic issue.  It just means the scar needs a bit of love and care to look its best as it heals.  That love and care comes in the form of liquid nitrogen.  When painted on, the liquid nitrogen burns off the top layer of skin to form a scab.  This eventually peels off to reveal healthier looking scar tissue.  As it turned out, I couldn’t even feel it.

That, however, brought us to the torture section of proceedings.  The nurse had to remove the sutures that had held together my dissected neck.  Some sections of my neck are entirely numb; others are not.  Those weren’t difficult to identify as she cut the suture and then pulled it out with tweezers.  Ouch.  That done, the nurse cleaned it all up and taped my dissected neck back up with steri-strips.  It is  a lot more comfortable with the sutures removed.

Unfortunately, my neck skin is red raw and irritated from the dressing changes.  She applied a simple gauze dressing to let the skin air and repair.  Paw paw ointment should do the job, she said, or bio-oil.  Try just to wash my face and neck with a washer, she advised, and just shower from the neck down.  That way I won’t need a waterproof dressing to prevent water going down my trachey hole.  If need be, I can put on the water proof dressings but otherwise I’m happy to give my poor skin time to repair.

With that, she sent us on our way.  We need to come back to see her for more wound maintenance next Monday.

The last stop today was for my first post-op medical imaging, ordered by Dr P on Saturday.  He’ll go through with us what the CT scan and OPG actually mean next Saturday, but the pictures were so pretty I couldn’t help but share…

Here is the OPG.  In the middle, you can see the oh so attractive wiring on my teeth.  The image is reversed, so the void where the teeth used to be is on the bottom right on the image.  The bike chain look-a-like is the titanium plate holding my jaw together as the fibula flap heals to form my new jaw.

OPG 15 August 2011.jpg

The scans envelope also contained this cool 3D reconstruction.  Again, the image is reversed.  It’s the left side of my face that’s funky.  That is one fine jaw, right there.

3D reconstruction 15 August 2011.jpg

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.

Pre-admission testing

There is one week to go and the race is on.  We have entered the sprint section of proceedings.

Over the last two days, I’ve had blood tests, a chest x-ray, an ECG (electrocardiogram), another MRI, another OPG (orthopantomogram), a general checkup, and my pre-admission clinic appointment.

The point of the blood tests, chest x-ray, ECG and physical checkup is to ensure I’m ready for them to slice and dice me for 10 hours or so.  Good respiratory function, good cardiac function and, they hope, no nasty surprises.

To that end, I also had a general checkup with my consultant physician, Dr L.  She will be responsible for my recovery.  In particular, she’ll be there to catch any infection early and treat it.  She listened to my heart and felt the lymph nodes under my arms and on my neck.  She’ll check on me each day, either early or late, she said.

Blaster also had a checkup, courtesy of the MRI and OPG.  They will show if she’s grown, wreaked further destruction, or been otherwise nasty.  For tumours, the MRI has the advantage over an x-ray (like the OPG) of showing good contrast between the soft tissues.  Of course, this is thanks to the contrast dye with which they inject their victim.   Not my favourite part, but I behaved myself today.  Not a single tear.  A little victory.

And, of course, no week is complete without paperwork.  At the pre-admission clinic, one of the clinical nurse consultants checked through my admission paperwork and gave us the opportunity to ask more questions.

They will probably call me on Friday afternoon, she said, to advise when I’m to be admitted this Sunday.  I’ll be on the ward that night, then in intensive care from the Monday night for about a week.  Unlike in public hospitals, I’ll have my own room in intensive care.  The walls are glass so they can keep a close eye on me, but I shouldn’t be disturbed by other patients.  The visiting rules for intensive care are family only but, she said, they should be flexible with visiting hours for Darren if he explains about Alannah.  (She won’t be visiting at least until I’ve had the tracheostomy and nasogastric tube removed and I’m up on the ward and, even then, we’re going to play it by ear.)

A few of you have asked about visiting in hospital.  As I said, the hospital’s visiting rules for intensive care are family only, but you’re very welcome to visit when I’m up on the ward.  Please remember I’ll be drooling and won’t be able to talk much, so have low expectations!  Visiting hours are 11am to 8pm.  The phone number for Macquarie University Hospital is 9812 3000.

Here are some photos of the ward rooms, courtesy of the hospital website.  There’s a small wardrobe and fridge over in the right of the photo and the ensuite is off to the left.  The computer “cockpit” is very cool: television, movies, radio, internet, telephone, as well as meal ordering and medical records.  No meal ordering for me of course.  Just slush and mush on the orders of my dietitian and speech pathologist.

 

 

I’m getting together my belongings for my little jaunt.  I’m going to load up the iPad with some podcasts and music.  I’m contemplating some audio books.  I have a pile of books to take too and some others I’ve ordered on their way.  Any genius suggestions welcome.

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.

Q&A: Diagnosis

Earlier this week, I emailed 45 questions to my oral & maxillofacial surgeon, Dr P.

He responded in a little under 2,000 words.  By the next morning.  While on holiday.

I read his email more than half a dozen times over the next day or so.  His answers reassured me, as much by their existence as their content.  Yes, they gave me a clearer picture in my head about how things would likely pan out but, more than that, they satisfied me he has this well in hand.

So here begins the three part Q&A series.  Today diagnosis, tomorrow surgery, finally recovery.  Enjoy.

Q&A: DIAGNOSIS*

How large is my tumour?

Your tumour is in the retromolar region of the mandible, extending forward to the body of the mandible and posteriorly to the ramus. The dimensions are approximately 4-7cms antero posteriorly, 3-4cms vertically and 2-4 cms transversely.

What has been destroyed other than the bone?  Do you often see ameloblastomas this destructive of mandible etc?

The tooth roots have been eroded and this is indicative of the tumour process. The destruction of the jaw is similar in other people with this tumour. As a sub group the “Unicystic Ameloblastoma” is the only ameloblastoma that has a more innocuous and predictable outcome.

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?

Ameloblastomas erode mandible (bone), breaching the periosteum surrounding the mandible and may invade soft tissue. Although relatively unusual it depends primarily on the length of time you have had the tumour and also the aggressive local expansion of the tumour itself.

Infiltration of the soft tissue means we have to involve this in the resection (removal) as we want to minimise the chance of recurrence (Ameloblastomas have a high rate of recurrence). This will involve removal of adjacent muscle, fat, attached and free gingiva (gum) and associated nerves and blood vessels.

I do not believe we will need to remove external skin but this is predicated on soft tissue Frozen Sections (we cannot do bone frozen sections). Invasion of the soft tissue will mean more tissue is required to be removed, more tissue is required to replace it (Fibula Flap).

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”?

The description is that the 2nd biopsies showed a lot of reactive scar tissue and fibrosis from the first biopsy. The residuum confirms that Ameloblastoma was indeed found and concurs with the first biopsy and diagnosis.

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”?

Apoptotic cells are cells that are dead and dying, programmed as part of the tumour or living process. Mitoses indicate the tumour  cells are dividing (ie. tumour is getting bigger)

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?

The aggressive appearance is a term that denotes the expression of rapid growth, unusual features or a tendency towards malignancy. It is used by surgeons to convey to patients that a more aggressive approach to surgery is required In your case this essentially means mandibulectomy, resection of associated soft tissue and replacement with an autogenous flap (Fibula). This is aggressive surgery versus less aggressive surgery (enucleation or scooping out the tumour which we do for unicystic ameloblastoma).

Some other diagnoses that could be entertained include Pindborg Tumour (Calcifying Epithelial Odontogenic Tumour) but I rely on the pathologist for clarification, in your case they confirm it is an ameoblastoma.

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?

The pathologists confirm that in the biopsies noted they are clear and un-ambiguous that there is no process suggesting cancer (malignancy). Cancerous features may involve cellular atypia, bizarre or frequent mitoses, the absence of an ordered structure or other aspects histologically that do not resemble normal tissue.

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?

He’ll get back to me on this.

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?

You do not need a CT PET scan

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