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?

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Comments

  1. Wow – that’s a tough road.
    I suppose it will help to keep your sights well and truly trained on the light at the end of the tunnel.
    Who will be looking after you and Alannah while you are “recuperating”? (doesn’t quite seem like the right word).

  2. Noble Note says:

    Can you organise a summit conference of relevant doctors? If not, I am willing to go kidnap the lot of them, and confine them where you want them.

    It is a tough road. You are facing it with admirable clear-sightedness. This will also let you see the end of the dark part, into life filled with light again.

  3. Guess you didn’t think you’d have to be using the crutches when you borrowed em 😦

    I say go for gold implants 🙂

  4. Danielle says:

    Kirsten, you are such an amazing writer! You brought tears to my eyes in your last posts.
    I wish I could be your personal physio! My small bit of physio advice is to get as strong as you can (and gain as much weight as you can..ie. lots of magnum bars!) Practice with your crutches before surgery (even on the stairs!) The good thing is that “fractures”/bone flaps heal really well on healthy people. You will be a little stiff after the plaster comes off and your ankle muscles a little weak, but it will all come back really fast and won’t require too much specialized physio hopefully!
    I wish there was some way to be in touch with you while you are in hospital. I’m sure you will need lots of rest and will be surrounded by visitors when you are ready. I know you say they have skype…we’ll just have to use the typing chats 😉
    Life is crazy for what it throws at us sometimes. But it only throws this tough stuff at the ones who can handle it and who will make it through as an even better person in the end. I have no doubt in your strength, perseverance, and outlook on everything. It’s one day at a time, ups and downs, hugs and kisses, friends and family, time and patience that will get you through this all.
    You are in my thoughts and prayers every day. And if there is any way that I can help, you know to call me anytime.
    Love you dearly my friend,
    D

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