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

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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: 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.

Perseverance

I’m persevering as best I can to get ready.

It’s a bit dispiriting.  I feel I’m fighting the system.  Putting your head down and just going with it seems to be the way of it.

It just feels wrong to me.  And wrong for me.

I get that it is routine for them.  I’m just not happy with blind faith.  My health, my responsibility.

What I did achieve today was:

I have emailed my initial list of questions to J at Dr P’s office.  She will forward them on to him on holidays.  I pretty much begged for a pre-op consultation.

I spoke to Dr A’s office.  I now have a pre-op consultation scheduled for next week.

I spoke to the pre-admissions office at the hospital. They don’t yet have my admissions paperwork.  They will probably schedule my additional tests for the week before my operation.  She will pass on my concerns to the dietitian.

Slowly, slowly.

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?