Surgery

As part of your treatment plan, you may want to have surgery to change the shape of your features or to revise something you aren’t happy with. This surgery may be aesthetic (meaning it aims to change something about the way you look), and sometimes it can be functional (for example, helping you breathe easier or speak more clearly).

Even if you’ve had operations in the past, they can still be worrying and it’s normal to feel anxious even if it is something you’re sure you want. The Clinical Psychologist in your Cleft Team will usually make an appointment with you to give you a chance to talk through these feelings before your surgery, but you might also find it helps to talk to your friends or family about this. It’s important that your expectations of any surgeries fits with what the surgeon thinks they can achieve, so take the time to make sure you fully understand what will happen, including how long it will take you to prepare for and recover from surgery. You may also want to talk to other young people with a cleft about their experiences of the surgery – try our Facebook Group.

Your cleft is as unique as you are, so what’s right for you might be different to what’s right for other young people with a cleft. The information here is a general guide only. Each team will have their own way of doing things when it comes to treatment procedures, and your surgeon will be able to answer questions about the details of any operations you may consider having.

In this section, we’ll look at three of the most common surgeries for teenagers with a cleft:

Orthognathic (jaw) surgery (Osteotomy) – an operation to correct the alignment (positioning) of your jaws.

Rhinoplasty – an operation to change the appearance and/or function of your nose.

Secondary Speech Surgery – an operation to help your speech sound less nasal. Sometimes called ‘velopharyngeal’ surgery.

If you need a different procedure, your Cleft Team should be able to provide you with more information about exactly what this will involve. Remember to keep asking questions if you’re unsure about anything until you feel comfortable with what will be happening to you.

Your Questions Answered

Should I get surgery to change how I look?

Lots of people have what we call a visible difference in a part of their appearance. This means there is something about the way they look which is considered different to the norm. It could be a scar, a large birth mark, a burn, or even the way a person’s jaws line up.

The fact that there is a chance for a person to have an operation doesn’t mean that they must have that operation. The most important thing is feeling happy and confident in yourself. Some people are happy with their appearance and don’t want to change how they look, or don’t want to have any more surgery. Some people find that they feel better about their appearance after an operation.

It’s helpful to know what’s on offer when it comes to surgery and it’s important to think about this very carefully. You could make an appointment with the Clinical Psychologist in your Cleft Team, part of their job is to support people with these kinds of decisions. Whatever you decide about surgery, they can also offer support to improve your self-confidence and talk with you about ways of managing any problems might be having in relation to your cleft.

Is there an operation that will get rid of my scar?

Scars can sometimes be made less red, less lumpy, or changed to blend in better with the skin around them. However, they can sometimes be more noticeable for a period of time after surgery and they can’t be made to go away completely. You can discuss with your surgeon if there are any options that would improve how your scar looks. Just remember – sometimes the problem isn’t about how a scar looks, but about how we feel about it.

We are usually far more negative about ourselves than other people are. It could be that your scar is the first place your eyes go to when you look at yourself in the mirror. It may be something that people notice when they first meet you, but after that they are more likely to look at your whole face, especially your eyes. You may be surprised to discover that lots of people do not even notice your scar at all!

For example, some people have features like moles which they think everyone notices, but even if they pointed this out to you, you would probably soon forget about it and start seeing their whole face again. The next time you look in the mirror, try to focus on the things you like about yourself, and look at your whole face instead of just your scar.

Upset about bullying or staring? See our bullying & self-image page.

Tips for surgery from young people with a cleft:

“Ask lots of questions before your operation so you know exactly what’s going to happen.”

“Arrange a visit to the hospital to see where your bed will be and meet the nurses who will be looking after you. It’s reassuring if there’s a familiar face and it will be less overwhelming.”

“Before the operation invite lots of friends and relatives round because they will all bring you presents!”

“Don’t Google it! You might find wrong information online or pictures that will just scare you. Ask your surgeon instead.”

Questions to ask…

It’s a good idea to note down questions you might want to ask at your appointment ahead of time. Here are some examples…

  • Can I still enjoy my hobbies while I’m recovering from surgery?
  • Will I have to change my diet after surgery?
  • When can I go back to school or college?
  • How might this affect me when I’m older?

Orthognathic (Jaw) Surgery

Danielle was 17 when she had her jaw surgery and wrote about her experiences. Read here story here.

What is it?

Surgery to change the position of your jaws.

Some young people and adults with a cleft have an upper jaw (maxilla) which is relatively smaller than their lower jaw (mandible). This can make the upper lip and nose look a bit more flat, and make the top teeth sit behind the bottom teeth (an underbite).

Surgery in combination with orthodontics can bring the top teeth and upper jaw forward to line up better with the lower jaw and teeth. The middle part of the face can be made to come forward and appear less flat. This can change the appearance of the face a lot, especially from the side. It can also help with problems with chewing and eating, as it will change how your teeth fit together. Surgery is usually only performed once you’ve finished growing, which is around 16-18 years old.

This is a serious surgery and happens in several stages:

Planning and Assessment

The specialists in your Cleft Team will work together to gather all the information they need to plan your surgery. This will include taking photographs, special x-rays, models of your teeth, and whatever else is necessary. The Clinical Psychologist will also arrange to meet with you to discuss your hopes and expectations of surgery, support you in deciding whether or not to go through with it, and help prepare you throughout the process if needed.

The cleft specialists will discuss with you your options and make a treatment plan that suits your individual needs. It’s up to you to decide whether or not to go ahead with surgery. This is an important decision and it’s a good idea to take time to think about it carefully and ask as many questions as you need. If you are unsure about anything, it’s important to talk to someone, like the Clinical Psychologist, before the treatment begins.

Orthodontic Preparation

Braces are put on your teeth to move them into different positions so that when your jaw is moved your teeth will fit together comfortably. This can take months and sometimes even years. Your teeth may have to move into positions that make them fit together less well than they did to start with in order for them to work better after the surgery.

Surgery

There are a few different ways this surgery is done. Sometimes only the upper or lower jaw needs to be moved. Sometimes the upper jaw is moved forward and the lower jaw is moved backwards so that the teeth meet in a middle position. The two jaws may be moved at the same or different times. Once they are moved, they will be held in place by tiny metal plates and screws. You might also need a device like a frame attached to the inside or outside of your mouth while you heal, and this may need to be adjusted.

The surgery itself is done under general anaesthetic when you’re asleep. As it’s all done inside your mouth, you won’t have any visible scars on your skin.

After the surgery, you can expect some swelling which may take a while to go down. Your lips will be numb at first, which may make the swelling feel worse than it actually is. You may have some tubes in your nose or skin to help reduce the swelling and make breathing easier, but these will be removed as soon as possible. You will be given painkillers if you need them as well as antibiotics to prevent infections.

Orthodontic Finishing

Once the position of the jaws is stable, the orthodontist can adjust the teeth into a final position to make the top and bottom teeth fit together so they work properly and help to keep the jaws in their new place.

Further Surgery

Sometimes, once you’re healed you may want or need further surgery, including:

Closure of fistulae: A ‘fistula’ is a small hole in the palate which can get bigger after jaw surgery and may need to be closed.

Speech surgery: Sometimes jaw surgery can result in a gap between your palate and the back wall of your throat during speech, so your speech will sound nasal. There is surgery to help with this, and you will automatically see the Speech and Language Therapist after jaw surgery so they can see how, if at all, your speech has changed.

Rhinoplasty: This is surgery to change the appearance of the nose. You may want this depending on how your appearance has changed after jaw surgery.

Revisional lip surgery: This is surgery to change the appearance of the lips.

Rhinoplasty

What is it?

An operation to change the appearance of your nose.

Your nose will grow a lot as a teenager, and it can start to look different as you become a young adult. Breathing can also become difficult if the nose bends on the inside.

The Cleft Team should ask you about your nose regularly. They will want to know how you feel about how it looks and also about breathing and whether anything has changed. The Clinical Psychologist can meet with you separately from the rest of the Team if you would like to discuss any other concerns.

Why and when would I have it?

A rhinoplasty may be able to change several different features of your nose, for example: nose width, profile and projection (how much it sticks out), nostril shape, or the shape and straightness of the nasal septum (the bit between your nostrils) to make breathing easier. Rhinoplasty is an operation that is usually done when the nose has stopped growing.

Remember – not every problem can be fixed with surgery, so it’s important that you talk about it in detail with your Cleft Team and make sure your expectations match those of the surgeon and other specialists.

What happens?

There are a few different kinds of rhinoplasty depending on what the aim is. If you want to know more about exactly what will happen to you, ask your surgeon. This surgery is almost always done under general anaesthetic (where you are asleep) and usually involves one or two nights in hospital.

After the surgery, you may wake up with a splint on your nose. Your nostrils may be packed with gauze or supported with a silicone splint inside your nose. The splints may stay for between 5 days and 3 weeks. When they come off, your nose will be swollen and you may have bruising around your nose and eyes. The nose is quite often spotty, but this soon settles. The skin of the nose will be red and shiny for a few weeks, and it may be numb. Breathing may feel different for a while until the swelling goes down.

What about after?

It can take about 6 months for the nose to settle to its final appearance. In around 1 in 4 cases, people who have had rhinoplasty will go back for other minor adjustments. If you’re concerned about the outcome, you can talk to the Cleft Team and they can tell you whether any additional surgery would be possible or helpful.

Secondary Speech Surgery

There are a number of different surgeries to help reduce the amount of air that escapes through the nose when you’re talking. They include pharyngeal flap, buccinator flap, pharyngoplasty, and a palate re-repair surgery. You might have had one of these already when you were younger.

Why and when would I have one of these?

If your voice is nasal and unclear, it could be that the soft palate is letting too much air through your nose while you’re talking. See page __ for more information on how a cleft palate can affect your speech. These surgery aims to reduce the amount of air that escapes through the nose and therefore improves your speech.

A Speech and Language Therapist together with the surgeon may recommend surgery if they think it’s right for you. Sometimes people are very concerned with sounding nasal and will want to do what they can to change this. Other people don’t mind so much. It’s up to you whether this surgery is something you want to go through with.

What happens?

Pharyngeal Flap: A square flap is taken from the lining at the back of the throat and attached at one end to the soft palate.

Buccinator Flap: Part of the inside lining of the cheek is moved to make the soft palate longer.

Pharyngoplasty: Two pieces are taken from the sides of the throat and joined together to make a ‘bulge’ on the back or sides of the throat.

Palate re-repair: The original cleft palate repair is opened, the muscles are realigned, and the palate is repaired once more.

These procedures help to block excess air from going into the nose, but still allow you to breathe normally. You will be asleep during the surgery, and will usually be able to go home one or two days later.

What about after?

You’ll need to take around two weeks off to properly recover, and you’ll need to stick to a soft diet for 2-3 weeks as well as follow other recommendations from your Cleft Team. The inside of your mouth will be swollen after the surgery, and it may take a little while before you can clearly tell if there has been a change in your voice – how long depends on the procedure.


Want to tell your story or ask a question? Leave a comment below!


 

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Published: November 2015

Next Review: February 2017

Source(s): Range of existing literature from CLAPA, including a leaflet produced by the Royal College of Surgeons in association with CLAPA. Stories and suggestions from teenagers born with a cleft have been included throughout. Information from Changing Faces was also consulted. This information has been reviewed by cleft health professionals as well as CLAPA’s Children and Young People’s Council.

If you have a comment or question about the information in this page, or would like to know more about the sources of this information, please contact Communications & Information Manager Anna Martindale at anna.martindale@clapa.com or 020 7833 4883.

 

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