Cleft Lip and Palate

Treatment is being offered, but does it mean I should accept it?

You've been for an appointment where you've had all your options laid out on the table. A surgical solution has been proposed that is designed to improve your appearance or your function, so naturally, you should grab the opportunity with open arms right?

Not necessarily. Just because something is available, it doesn’t mean you instantly should jump up and down and take it. The decision to have an elective surgery is not a whimsical one – rather it is a major decision which will have a number of pros and cons, and once the surgery has been completed, it’s nigh on impossible to go back and change your mind.

At the moment where you’re presented with the option to have surgery, it can of course feel that others in the room may have their preference for you to have the operation – it’s important that you put all of that aside for a minute (or hour, or days, weeks, months or however long it takes) to weigh it up for yourself and make the right decision for you.

For me, I was tasked with the decision when I was a teenager as to whether I would have orthognathic surgery when I was a little bit older (two years of orthodontic work would be required before the surgery so if I was going to proceed, they wanted to get that work underway). My parents, surgeon and others could see the potential benefits of this surgery – a more typical appearance, better dentition, and the confidence boost that may accompany all that. As a 16 year old at the time, I was of course, viewing the world through a different lens to my surgeon and my parents and in hindsight didn’t have either the skills or the information to evaluate and make this difficult decision. So at the time, I buried my head in the sand and decided that I wasn’t going to have the operation (what I was actually doing was deferring having to tackle the issue head on and make an informed decision). Eventually, in 2012 at the age of 20, I re-evaluated that decision, sought out the information I needed and opted that I would in fact go ahead with the procedure. Many people face the dilemma of whether or not to proceed with treatment – here’s a few tips to help make that decision.

What is the best case scenario?

If you undergo the surgery and all goes to plan, what does that mean for you? In what ways would you be better off than you are now? If you don’t feel that (in the long term) you would be any better off than you already are, then I would be suggesting you may not need this treatment.

What is the worst case scenario?

Equally, it’s important to determine what the worst case scenario of having the surgery is. In many situations it could be that you are back where you started, or in a position that, although not the desired outcome, it’s an improvement on where you started out. However, some surgeries carry a few more risks and should they fail, could put you in a worse or different situation from where you started – for example, your jaw may be in a better position, but you may experience pain where you didn’t before. That’s not to say that you shouldn’t have the operation as these risks could be incredibly small, but you need to go into it knowing what all the possibilities are and to be prepared for that.

What does the short term look like?

You need to consider what you are going to have to go through in the short term – i.e. what are the immediate consequences of the surgery? How much time will you need to take out of school/university/work? How long will I be in hospital for? What level of independence are you able to maintain during the recovery phase? Will you be able to do all the things that you normally do or will you need to be on a modified diet for a while? Who can help out? Where are you going to stay while you recover? (hint: Mum’s place).

What does the long term look like?

Of course, the short term is likely to be a bit miserable, we accept that as par for the course, and that we are playing the long game here. So ask yourself, what will the long term look like? What are the benefits? What is it that you are struggling with now that the surgery should ease for you in the future? Equally, if you don’t have the surgery, what is your long term prognosis? Are you coping okay just now, but life will get harder without having the surgery? How long is it going to take before the recovery is complete and you can reap the rewards of the surgery?

Who am I doing it for?

Selflessness is a virtue, but this is one time where you really do have to make a decision that is solely in your best interests. You don’t buy the latest broadband package from Vodafone just because the Vodafone sales representative showed up unannounced on your doorstep – you buy it because it’s the best for you. So why would you be any different for a surgery? Unlike a broadband contract, you can’t cancel a surgery once it’s started, so ensure that you are doing it because it’s what you want – not merely because a surgeon has suggested it might be quite good. Similarly, although it’s a good idea to talk to friends, family and partners about this decision and to value their input, again, you should use their input to help you become clearer about the pros and cons – not to say yes or no because it’s what your partner or parents want you to do.

Naturally, those who are close to you may have quite strong opinions of their own and you may find it hard to have an open discussion with them. If this is the case, accessing a psychologist via your local health service could be a good option to help talk this through.

What are my motivations for having the treatment?

This one is really important to establish – why are you considering the surgery? Is it to improve a function – e.g. will it improve your speech, breathing etc.? Is it to improve appearance – e.g. to straighten your nose? Does it do both – e.g. to improve your breathing and appearance by straightening your nose? There’s no right or wrong answers as to whether you’re having a functional or appearance related surgery, but just be sure that your expectation of what surgery can achieve is realistic – e.g. a rhinoplasty can improve the shape of your nose; it cannot find you a girlfriend. If your motivation is to get a girlfriend, you may feel that improving your appearance may help, but actually there is far more to it than that. Talk to your surgeon or psychologist about what your goals and ambitions are to see where your treatment fits within that, but please, don’t think a surgery is going to be the solution to all your worries and problems.

Can I change my mind?

If you’re feeling uncomfortable about consenting to and going ahead with the surgery at this very moment in time, but think it may be something that you’re interested in later on when circumstances are different, find out whether it would be possible to have the surgery be done in the future, as well as any pros and cons of delaying treatment.

What questions do I have? What information do I need?

A lot of information is directed towards you during a consultation and then you go away with a sore head trying to make sense of it all! Take a notepad and pen – before you get to the appointment, write down any questions that you want to know the answers to as a prompt to remind you to ask the questions. Similarly write down the answers to the questions as well as other key bits of information that you may want to refer back to later or to share with others. Often, it is helpful to take someone along with you who is not as emotionally invested in the consultation as you are who can keep a level head and help you to process and remember the information later on.

notes

What are the alternatives?

What happens if you don’t have the surgery? For example, if you choose not to have orthognathic surgery, does that mean that you can still have rhinoplasty if you wish? Are there non-surgical approaches (e.g. speech therapy) that could be explored? There may not be other options – often there isn’t, but by asking the question, you will be satisfied that you have explored all possibilities.

Who can support me?

Going through a surgery is exhausting both physically and emotionally. Identify people who can support you both in practical terms (e.g. relieving you of some of your usual responsibilities, helping with meals, taking you to appointments etc.), as well as people who can provide you with companionship on those days where you may be feeling scared, down, overwhelmed, upset or unsure.

Good luck with making your decision – taking your time and giving serious consideration to whatever is being proposed will enable you to make the best decision for your individual circumstances.

 

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