A guide for patients following pituitary surgery

Introduction

The aim of this leaflet is to provide some answers to questions that are asked by patients after they have had pituitary surgery. We are aware you may have additional questions or may want more detailed individual answers.

If you require any further information please contact:

Clinical Nurse Specialist (CNS) Team on 0151 556 3449

If you have any queries specific to outpatient or radiology appointments please call:

Miss Gilkes’ or Mr Sinha’s secretary on 0151 556 3347.

How am I likely to feel when I go home?

No two people are the same. Some people recover quickly following surgery and others may take longer. We have listed some common symptoms patients may experience following surgery.

It is common to experience some discomfort, a blocked nose and mild headaches initially after surgery. These symptoms should be relieved easily with simple painkillers (e.g. paracetamol) which you can have prescribed to take home with you. You should find these symptoms get a little better with each day.

Another common symptom is tiredness and you will need to allow yourself time to recover, building up your exercise tolerance gradually. Allowing yourself time to rest, eating a balanced diet, gently increasing what you do on a daily basis are all useful tips.

Sometimes going home can feel a bit overwhelming. At a time when you have a lot of information to process, overcoming physical and emotional changes. You may need to talk about your feelings following surgery and how you are finding coming to terms with your diagnosis. Remember the nurse specialist is here to help and is happy for you to contact her to offer advice, support and a listening ear.

When will I be able to go back to work?

Depending on your job and circumstances, we recommend between four to six weeks off work as a recovery period. If you require further advice on returning to work you should contact your nurse specialist or GP.

Do I need to keep taking my steroids after I go home?

Yes, it is important that you keep taking your prescribed dose of hydrocortisone. Do not stop taking them without medical advice.

When you are prescribed hydrocortisone the pharmacist will provide you with a ‘blue steroid card’ from the hospital to carry. We recommend you carry the card in your bag, wallet or pocket to display your hydrocortisone needs.

If you become ill while you are taking hydrocortisone, it is essential to increase your dose appropriately. The doctor, nurse specialist or ward nurse will discuss ‘sick day rules’ at discharge. More information can be found on The Pituitary Foundation website www.pituitary.org.uk or discussing it with your GP.

Will I need to take hydrocortisone (steroid) forever?

Hydrocortisone is prescribed as a replacement therapy after pituitary surgery as you may not be producing enough cortisol, the stress/steroid hormone, naturally.

The endocrinologist will make an appointment with you after you have recovered from surgery to undertake some blood tests to assess your cortisol levels. These blood tests will confirm if you need to stay on hydrocortisone or if you can stop taking it.

What to expect after sinus surgery

It can take several weeks for you to fully recover. You’ll have some swelling and tenderness inside your nose after the surgery, but this is normal.

You may have symptoms like a severe cold or a sinus infection. This is due to swelling, dry blood, mucus, and crusting in your nose.

Some minor bleeding is normal for two to three days after your operation. If you think you are bleeding a lot, be sure to seek medical advice (General Practitioner, Accident and Emergency Department).

What to avoid after sinus surgery

Do not blow your nose for at least a week after surgery. Do not do any heavy lifting, straining, or strenuous exercise. This increases the likelihood of bleeding in your nose. If you have to sneeze, try doing it with your mouth open.

When do I start using the sinus wash (Neilmed) that I have been prescribed?

The surgical team will advise when to start using the sinus wash. The daily sinus wash will help your nose and sinuses recovery quickly, it gently helps clean and sooth the nasal passages to dissolve any nasal crusting following surgery. This should be done at least three to four times a day in the first two weeks after surgery.

How long after my operation will the stitches or clips be taken out?

If you had your surgery through the nose (trans sphenoidal surgery) you will not have any nasal stitches that will need to be removed.

The surgeon may have mentioned to you that a small amount of fat may be taken from your abdomen / leg to be used in the operation. If this is the case you will have a small wound containing stitches. These are often soluble. The ward nurses will check the wound prior to discharge and inform you of how to have the stitches / clips removed.

If you had an operation through the skull (craniotomy) stitches or clips are usually removed a week later (7-10 days). The ward staff will tell you exactly when they are due to come out and inform you of how to have the stitches / clips removed.

I have been having daily blood tests; do I need any more blood tests?

Yes we recommend that you have a blood test between 7 and10 days following discharge. This blood test can be taken at your GP practice and it is to monitor your salt (sodium) levels. A letter will be given to you that you must past to your GP in order to arrange the blood test.

When will I be able to drive?

You must tell the DVLA if you have a pituitary tumour. You will be asked to complete a B1 form. This can be completed online https://www.gov.uk/pituitary-tumour-and-driving.  

Or by contacting the DVLA directly (see below)

Trans-sphenoidal surgery (surgery through the nose) does not itself limit your entitlement to drive. You will be able to drive when you feel able and safe to do so. The only condition likely to affect your driving is having a problem with your eyesight. Your eye specialist (ophthalmologist) will be able to discuss this directly with you.

If you have an operation through the skull (craniotomy) you also have a legal obligation to inform the DVLA and you will be unable to drive for a minimum of 6 months. The DVLA will liaise if necessary with your consultant and let you know in writing when you can return to driving. For more information please speak to you doctor, nurse specialist or contact the DVLA directly.

What follow-up should I expect after surgery?

A formal discharge letter will be sent to your GP following your discharge.

You will receive two outpatient appointments sent to you through the post: firstly, a scan (MRI) will be organised between 8-12 weeks following surgery.

Then you will be sent an appointment to attend the joint Endocrine and Neurosurgery Clinic to meet with your consultants.

There may be ongoing appointments with the endocrinologists for blood tests to assess pituitary function and the eye specialists (ophthalmologists) to monitor your vision.

Are there any symptoms that I need to watch out for after I go home?

Yes, these are:

• Any continuous discharge of watery fluid from the nose
• Any high temperature, severe headaches, or neck stiffness
• Any excessive thirst or passing unusually large volumes of urine

If you experience any of these symptoms you can contact the nurse specialist team.

If you are experiencing severe symptoms you should seek medical advice, either from your General Practitioner or Accident and Emergency Department.

When can I plan to fly?

This depends on the type of operation you have had. This can be discussed with your consultant at your outpatient appointment. However if you wish to fly before that appointment please discuss this with your consultant prior to discharge. You have a responsibility to inform your insurance company about any change to your health as your travel insurance will not be valid if you do not declare all of your medical history.

When can I resume sexual relations?

There is no time restriction; it will depend on how you and your partner feel after your operation. You can resume sexual activity as soon as you feel able.

What about alcohol?

You can drink alcohol after your operation but we recommend no more than 1-2 units a day, which equates to a small glass of wine or half a pint of ordinary strength lager.

Where can I get help and support?

If you find you are having some lasting symptoms or worries following surgery, the CNS team will be happy to see you in clinic to discuss this in detail. We call this consultation a holistic needs assessment (HNA). Many patients find this very useful as it provides time for you to talk about things that are impacting your overall recovery and is led by how you are feeling. This can be a good step forwards in your recovery process and can be done at any point following your operation.

Clinical Nurse Specialist

The Walton Centre

Telephone: 0151 556 3449 Via switchboard: 0151 525 3611 bleep 5342

Email: wcft.skullbasenurses@nhs.net

Endocrinology Nurse Specialist at Royal Liverpool Hospital

0151 706 2417

 

Endocrinology Nurse Specialist at Aintree Hospital

0151 529 4874

 

The Pituitary Foundation

PO Box 1944

Bristol BS99 2UB

Helpline: 0845 450 0375  www.pituitary.org.uk

 

The Brain Charity

Norton Street

Liverpool Merseyside L3 8LR

Telephone 0151 298 2999 www.thebraincharity.org.uk

 

DVLA

DVLA Swansea SA99 1TU

Telephone 0300 790 6806 (car drivers & motorcyclists)

Telephone 0300 790 6807 (bus, coach & lorry drivers)

www.gov.uk/dvla-medical-enquires

 

For practical advice our Patient Experience Team can be of assistance.

Contact them on 0151 556 3090/3092

Email: wcft.patientexperienceteam@nhs.net 

or www.thewaltoncentre.nhs.uk

 

Alternatively, log on to:

www.thebraincharity.org.uk or call 0151 298 2999 for advice and information for people with neurological conditions and their carers.