Going home following removal of an acoustic neuroma

Going home

You will be able to go home as soon as the doctors, nurses and physiotherapist are happy with your progress. The nurses will want to be sure that you will be able to manage at home with only minimal assistance. The medical staff will want to be happy that the wound has healed and that no leakage of cerebrospinal fluid (CSF) is evident.

The physiotherapist involved in your care post-operatively will need to ensure that your balance has compensated enough, allowing you to walk safely. This is usually about a week after surgery.

We will involve you in the discharge plan, so that you can ask friends or family to collect you at a convenient time.

There are certain questions that people regularly ask after their surgery and these are covered. If you have any further questions then please ask.

Facial weakness

Following the surgery you may have one or several of the following:

• a degree of facial weakness
• incomplete eye closure
• inappropriate facial movement
• dryness or excess fluid in the eye  alteration of taste

These are due to the proximity of the facial nerve to the acoustic neuroma. As you begin to make your recovery from the surgery these should slowly begin to improve. The physiotherapist may give you some simple exercises to perform, to prevent the muscles of the face from becoming too tight or too weak. This weakness can occur up to two weeks later so it may develop after discharge. If it does develop after discharge, please contact the clinical nurse practitioner (CNP).

Nerve regeneration is a slow process and it can take up to eighteen months for recovery to be seen, so please be patient

Taste disturbance and mouth dryness or excessive salivation

There may be some alteration in taste, a sore tongue and the amount of saliva secretion after surgery. In a few cases this Change may be prolonged. For others, increased salivation and tear production may occur when eating or talking.

Eye care

If you have facial weakness after surgery you may have difficulty in closing your eye. Depending on the amount of difficulty you experience it may be necessary for you to see the eye specialist prior to being discharged home. Even if you do not see the eye specialist after surgery, it is vitally important that you take great care of your affected eye.

If your eye does not close properly it is open to foreign objects and infection. It may also become dry as tears may not be produced. If necessary, eye drops and eye ointment will be prescribed for you to take home.

Eye drops should be used to keep the eye moist during the day and prior to bed. These can be used every 15 minutes if the eye is particularly dry. If the eye stings when the eye drops are inserted then it is possible that the preservative in the drops is an irritant. You should obtain some preservative free drops from your GP or chemist.

Eye ointment should be used at night and can be used during the day, but it can blur the vision. Put the ointment in after the drops, otherwise the drops wash the ointment out.

Think blink to help the muscles around the eye recover and to protect the eye, think blink and actively try to close your affected eye at least once an hour.

If the eye becomes red, sore or irritable then seek early advice from your GP or an ophthalmologist as this could be the beginnings of an infection and it may need to be treated.

Headaches

Headaches are troublesome for some. The pain may be related to intracranial pressure changes, holding the head in one position, muscle spasm, anxiety or other unknown causes. Headaches immediately after surgery are common but by now these should have started to resolve if they have not disappeared completely. Some people do suffer with nagging headaches after the surgery and these can be relieved with pain killers.

If headaches do persist and are not relieved by pain killers, the light hurts your eyes, you have a stiff neck or they are accompanied by vomiting then please contact your GP or CNP.

Cerebrospinal fluid (CSF) leak

Whilst you were in hospital the doctors will have been keeping a close eye on you for leaks of fluid CSF from your nose, ear and wound. By the time of your discharge it is unlikely that a CSF leak will develop, but should you develop a leak of clear fluid from your nose, ear or wound, please contact CNP or GP.

There are some simple precautions we ask you to take to prevent a leak happening.

• avoid any activity that may raise the pressure in your head for approximately four weeks
• prevent constipation by taking laxative to remain loose
• no heavy lifting
• no strenuous exercise or weight training

Fatigue / tiredness

Feeling particularly tired following surgery is quite usual. Fatigue is a problem for some patients long after other symptoms have disappeared. It is important to adjust your pace in harmony with your energy level. Please remember that you have had major surgery to your head. You may find it useful to take naps in the afternoon until your energy level returns. It is very important that you do not do too much when you get home. A slow gradual increase in your activity level will help you to recover and will avoid the side effects of immobility.

If there is a particular event or activity you want to participate in, and you feel able to then try. If you become tired then stop, and if you are exhausted the next day then rest and recuperate!

Balance problems

As the balance apparatus in the normal ear compensates for this loss, unsteadiness will improve. You may find that your balance is not good particularly in darkness, when you are tired (by end of the day), or when there is sudden change in position.

The physiotherapist will have been working with you on a daily basis to improve your balance. You will need to continue to work on your balance at home by working through the exercises that the physiotherapist has given you. Regular walking is particularly useful.

Flying

Travelling by aeroplane after acoustic neuroma surgery should be avoided for at least three months after the surgery. This is to ensure the patch that has been used has healed fully after your surgery to prevent leaking CSF. After three months the area should be well healed and flying should not cause any problems.

Driving

There is no need to inform the DVLA (Swansea) that you have had surgery, unless specifically instructed to do so by a medical team. The DVLA’s advice is that you do not return to driving until ‘fully recovered from the surgery.’ This varies enormously between patients and depends on your ability to perform an emergency stop, being able to glance in your mirrors and being able to look right and left without feeling nauseous and dizzy. Once you feel able to do these, you are able to return to driving. To begin with, only drive short distances, and gradually increase the distance.

Informing your GP

You will be given a discharge letter which will summarise your stay in hospital. This should be delivered to your GP surgery as soon as possible. This will inform them of any tablets, drops or ointments that you have been prescribed on discharge and the details of your surgery. You do not need to make an appointment to see your GP unless they have specifically asked you to do so or you have any problems.

Outpatient follow-up

The surgeons would like to review you in outpatients. All appointments are likely to be in about six weeks with neurosurgeons. The neuro-otologist (ENT Surgeon) will see you in the clinic around 12 weeks after surgery. The clinical team will advise you on when you will a post-operative MRI (magnetic resonance imaging), and for how long scanning should continue to ensure that your acoustic neuroma has not re-grown. Once you have been given the all clear at five years you will be discharged.

Returning to work

It is not unusual for people who have had this surgery to remain off work for approximately three months. It can take a long time to build up your energy levels. Do not be tempted to go back to work too early as this is likely to cause you to become very tired, very quickly.

If you have a job that allows you to resume work on a part-time basis, then take this opportunity and gradually build up to your previous hours.

Only you will really know when you feel able to go back to work, but a good rule of thumb is around the time of your 12 week appointment in ENT clinic.

There is a lot of information here; it is not intended that this will answer all your queries, so if you have any further questions, please do ask.

Contact telephone numbers

Clinical nurse practitioner: 01223 245151 and ask for bleep 154-175
AMNET (The Acoustic and Meningioma Network): 01953 860692