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.
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.
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.
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.