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• Introduction
• The Pituitary Gland – A little Anatomy and Physiology
• What is a pituitary tumour?
• Why do I need an operation?
  • Vision
  • Hormone Disturbances
  • Size
  • Other Functions
  • Incidental Discovery
• Surgical Treatment
• What will surgery achieve?
• What sort of surgery is undertaken?
• Transsphenoidal Surgery
• How long will the operation take?
• How likely is a cure & what can go wrong during the operation?
  • CSF Leaks
  • Bleeding
  • Vision
• What happens after the operation?
  • Immediate
  • The Next Few Days
• Hormone Replacement
• Craniotomy
• Follow-Up
• Other Factors to Consider
• Patient Story

Introduction

You might find it helpful to read our booklet The Pituitary gland and Its Hormones in conjunction with this booklet.

You have been referred for an operation on your pituitary gland tumour, which you might find a frightening prospect, especially as the operation involves the head. This booklet is intended to answer your questions and try and reduce some of these fears, especially as we find that most patients have similar concerns.

The Pituitary Foundation recommends that you see an Endocrinologist (a doctor specialising in the bodies’ hormonal system, including the pituitary gland) who will arrange for a set of blood tests to be performed before surgery. The endocrinologist should confirm any initial diagnosis and advise you on the recommended treatment route, which may include surgery, Radiotherapy and long-term medication. They will also arrange an MRI scan and visual fields test, both of which are needed before the operation. If possible take someone with you when you see the endocrinologist and the surgeon to help you remember what is said. It is recommended that you write things down if that helps. You should feel free to ask questions if you don’t understand.

The Pituitary Gland – A Little Anatomy and Physiology

The pituitary gland is normally a pea-sized gland that sits in a small depression in the base of the skull immediately under the brain and behind the eyes. It is not part of the brain but is connected to it by a stalk with a tuft of special blood vessels through which the brain sends the hormonal messages that control the functions of the gland. Across the space between the gland and the brain lie the optic nerves - the nerves that connect the brain to the eyes. The easiest way to visualise the location of the gland, is to imagine (if you can) that you could put your forefinger up your nose as far as it would go - and the gland would be at your finger-tip. The accompanying diagram will also help you understand the location of the gland.

The pituitary gland produces hormones, which are distributed in the body by the blood stream to control various important body functions. The pituitary is the controlling gland through which the brain instructs all the other major endocrine glands. Special cell groups within the pituitary gland control different functions:

• the stress response
• metabolic rate (which is the speed at which the body uses food as fuel)
• growth
• milk production
• sexual function (in particular the menstrual cycle in women) and fertility.

What is a Pituitary tumour?

Pituitary tumours are often known as ‘adenomas’; this means a benign (non-cancerous) tumour involving glandular material. With an adenoma, cells of the pituitary gland begin to function independently of the normal control by the brain, and slowly increase in number. Adenomas account for more than 95% of all pituitary tumours. We do not know what causes the majority of pituitary adenomas, but they are not caused by stress. Only in very exceptional cases, less than 1%, are they hereditary.

The other 5% of pituitary tumours have many causes. The most common in a very long list are meningiomas and craniopharyngiomas. All of these tend to cause similar symptoms to pituitary adenomas, although there are some subtle differences.

The word ‘tumour’ covers a lot of different conditions and may often have frightening connotations. The vast majority of pituitary tumours are benign: only very rarely (less than 1%) the tumour will be malignant (cancerous).

There are several different types of pituitary tumours. You will probably understand this leaflet better if you know what sort you have. If you do not know, ask your endocrinologist to explain the different types of tumour to you and tell you which one you have.

Why do I need an operation?

A pituitary tumour may affect your vision, your hormonal balance or other functions. These symptoms commonly lead to the diagnosis.

Vision

If your pituitary tumour has enlarged considerably, it may be pressing the optic nerves (to the eyes) which lie just above the pituitary gland. This can affect your eyesight, and may cause any of the following symptoms:

• It may reduce the amount that you can see overall so that particular areas in your field of vision are reduced. This usually affects the periphery (to the side) and makes it seem as if you are looking down a tunnel. It often affects one eye more than another. This is technically known as a bitemporal hemianopia.

• It can affect vision by reducing your ability to see detail. This is called reduction in visual acuity. This will be discovered when you look at the reading chart that you will undoubtedly have seen in almost every doctor’s surgery and perhaps, too, in one of the endocrine clinics you have attended.

• Large tumours, very rarely, can cause double vision.

Hormone Disturbances

A significant number of pituitary adenomas are discovered because they cause the over-production of one particular hormone. In contrast, another group of pituitary adenomas fail to produce one or more hormones.

The three most common types of over-producing adenomas are:

• Prolactin-secreting tumours (prolactinomas) which produce the hormone prolactin. (See our booklet entitled Prolactinoma.)

• Cushing’s disease: this is caused by over-production of the hormone ACTH (Adrenocorticotrophic Hormone) which in turn releases Cortisol (the body’s natural glucocorticoid steroid hormone). (See our booklet entitled Cushing’s.)

• Growth hormone-secreting adenomas - the excess secretion of growth hormone causes a condition called Acromegaly. (See our booklet entitled Acromegaly.)

There are a couple of other hormone-producing tumours, but these are very much more rare.

The groups of pituitary adenomas which fail to produce one or more hormones are called non-functioning pituitary adenomas. This condition results in symptoms of hormone deficiency. They are often diagnosed late because they don’t produce specific symptoms of hormone excess. (See our booklet entitled Hypopituitarism and Replacement Therapy.)

Size

When pituitary tumours are very small, (less then 1cm) they are called microadenomas. Large tumours (over 1 cm) are called macroadenomas.

Large tumours can also prevent normal hormone secretion by other parts of the pituitary gland causing symptoms of hormone deficiency. Sometimes they are more difficult to control.

Other Functions

A tumour can also be discovered when its increase in size has effects on functions other than vision. This usually occurs when patients have had scans for headaches, but occasionally (and again very rarely indeed) tumours can be so large that they can cause blockage of the circulation and fluid inside the brain, leading to a condition caused hydrocephalus (water on the brain).

Incidental Discovery

Pituitary tumours are sometimes discovered when a patient has a scan for some other reason. It may be causing headaches or no symptoms at all. This is happening more and more commonly as patients receive scans for other conditions. Sometimes dentists or opticians refer their patients. Patients with incidentally discovered tumours require surgery only if the tumour has reached a certain size or if it is found to increase in size over time.

Surgical Treatment

Operations on pituitary tumours should be very safe. This is particularly the case when the hospital unit has a lot of experience in pituitary surgery (centres of excellence) - the choice of surgeon is crucial to the likelihood of successful removal of the tumour, with experienced pituitary surgeons having the best results. Most patients only stay in hospital for a few days. Some units like to transfer their patients back to the referring endocrinologist fairly soon after the operation for more detailed tests. The minimum stay would involve being in hospital overnight, although it usually involves four or five days in the neurosurgical unit.

What will surgery achieve?

The aim of surgery is to remove as much of the tumour as safely possible, without damage to the delicate nerves and blood vessels in the area. Surgery can, in some cases, remove all of very small tumours but complete removal of large tumours can be difficult and inaccessible areas of the tumour will be left in place. For many patients it is an essential part of their treatment to achieving restoration of hormone balance – there is more information on this subject later in this leaflet.

What sort of surgery is undertaken?

Most operations on the pituitary gland are now carried out through the nose. This is called Transsphenoidal surgery. ‘Trans’ means across and ‘sphenoid’ is the air cavity in which the pituitary gland sits, as you will see from the earlier diagram.

Operations through the skull (craniotomy) are far less common these days than they used to be. There are a number of ways in which craniotomies can be carried out. They are used when the simpler operation through the nose would not achieve the desired result.

Transsphenoidal Surgery

There are a number of different ways in which the surgeon can reach the pituitary area:

• Until recently, the most common way was under the lip, just above the front teeth. Although it is being generally superseded, it is still very popular and safe. Some consider it has advantages over the approach that just goes through the nose.
• A popular alternative is to go directly through the nose making an incision completely hidden in the depth of the nose.
• Recently an endoscopic approach has been introduced in some centres. Fine tubes called endoscopes are pushed through the back of the nose, involving a small incision.

Each of these routes has theoretical and practical advantages and disadvantages, and ultimately will be the choice of the surgeon.

Once the tumour is removed, some repair work will be needed at the site through which the tumour has been removed. Some surgeons allow this to heal naturally, which it usually does. Others use body tissue to make a repair. Usually this tissue is either fat from the abdomen or a postage stamp-sized piece of a membrane from the thigh, sometimes with a bit of muscle as well. Your surgeon should tell you if he or she uses this sort of repair.

All these operations are performed under a general anaesthetic. The anaesthetist will see you before the operation and will give you details of what will be happening. Modern anaesthetics are very safe and you will not wake up during the operation, only at the end.

How long will the operation take?

The anaesthetic will take 20 to 40 minutes, depending on a number of different factors. The surgery itself can take anything between 40 minutes and four hours, again depending on a number of factors. Most surgeries take in the region of an hour to an hour and a half.

How likely is a cure and what can go wrong during the operation?

The overall aim for treatment of a pituitary tumour - a cure* - is a complete normalisation of hormone balance. In many cases surgery is one stage of treatment to bring about a cure; radiotherapy and medication may also be required. It may be some time before hormones reach a ‘normal’ level.

For small hormone-producing tumours, most surgeons would expect over half of their patients to be cured by the operation, but larger tumours may not be completely removed even by an experienced surgeon.

Most surgeons would expect at least three quarters of patients overall to show improvement in vision with about a third returning back to normal. The extent of recovery will rather depend on how bad the vision is prior to the operation. The improvement, when it occurs, continues over 6 months after the operation.

*The use of the word cure in the section above is often used by surgeons as stated: the complete normalisation of hormonal balance. This use of ‘cure’ can be confusing to some patients. Some patients find significant reduction in symptoms, other patients complete reduction. However most patients experience life changes which can include taking medications long-term or adapting to physical changes that don’t go back to ‘normal’.

CSF Leaks

The most common problem, in 1-2% of patients, is a leak of brain fluid. This fluid is known as CSF (Cerebrospinal fluid). If it occurs, a clear salty fluid will drip down through the nose or down the back of the throat. If you find clear fluid leaking from your nose after being discharged from the hospital, phone the doctor-on-call on your surgical ward, to arrange to go back as soon as possible. It will be important for them to see the fluid, so collect any drips in a small clean jar. The fluid will be tested for sugar which, if present, suggests it is CSF. Sometimes, however, the fluid is simply watery mucous, which is completely safe.

Each unit has its own way of managing this problem, but it is vitally important to control it. Many units use a small fine tube (a spinal drain) in the back for a few days to control the leak. A second operation may be needed to take a patch of fat from the abdomen, or a bit of a membrane from the thigh, to seal the leak. Please note, this is only required in about 1% of all patients undergoing surgery.

If the CSF continues to leak, bacteria can creep up via the route that the CSF is escaping from and lead to inflammation of the brain, a mild form of meningitis. If you did suffer from this, you would feel unwell, develop a fever, a stiff neck and find bright lights bothered you.

Bleeding

• Very rarely bleeding during the operation can cause a problem and an operation may be abandoned and a repeat operation offered at some later stage.

Vision

• Patients concerned about the closeness of the operation to their optic nerve often ask about the risk to their eyesight. There is virtually no risk to eyesight with transsphenoidal surgery.

Finally, sometimes the surgeon will offer a second operation if the hormone condition has not been corrected. This decision should always be reached in conjunction with your endocrinologist.

What happens after the operation?

Immediate

If you have had transsphenoidal surgery, you will wake up from the operation with padding inside your nose. Some units use special sponges and some units prefer to use long ribbons. How long these are left in place varies. Sometimes they are removed the following day, but there are many different routines. The doctors and ward nurses will tell you, but be sure to ask. You may experience some discomfort while the packs are in and removal can be painful for some, but it is a short procedure.

When you wake up from the operation, you are likely to have a painful nose, perhaps a headache or bruising of your face. You will be asked routine questions by the nurse, many of which will seem a little strange, such as what day it is and where you are. They will also test your eyesight, and check movement of your arms and legs. You will have a drip in your arm and you will not be allowed to drink for a while. Because you have to breathe through your mouth you may feel rather dry and thirsty.

When you go back to the ward you usually feel very much more comfortable and you should be on your feet the following day.

The Next Few Days

If you have excess production of a hormone, you may not notice very much difference at all at first. This is particularly true with Cushing’s disease, although acromegalic patients who have had successful operations usually notice a reduction, even cessation, of sweating and the start of a gradual shrinking of their hands and feet by the time they go home.

If your vision was affected before the operation, you may notice your vision improving while you are still in the hospital. Most units will check this before you are discharged to make sure that the operation has had its desired effect.

The doctors and nurses will want to know all about how much fluid you are taking in and passing out in your urine and therefore you will be on a strict fluid balance chart.

Very occasionally the part of the pituitary gland, which helps control the volume of urine can be disturbed and you may start to produce a lot of urine and be very thirsty. This is called Diabetes Insipidus (DI) (see our leaflet entitled Diabetes Insipidus) and is not connected with the much more common diabetes mellitus where you have too much sugar in the blood. If this occurs you may need either an injection, tablets or a nasal spray of DDAVP or Desmopressin to help control this excess urine. It may be necessary to continue this for a few weeks or even months. Occasionally it can be permanent. If you do feel thirsty, however, the most common reason is because you are breathing through your mouth.

About ten daysfollowing surgery, usually when you have returned home, a problem can occur with fluid balance, the ratio of fluid input to urine output (this is very rare, although more common in the over 65s). The pituitary becomes ‘confused’ and releases too much of the natural ‘DDAVP’. This interferes with the control of urine production and the body is unable to pass sufficient urine to balance the amount you drink. This results in very dilute blood and causes the sufferer to feel washed out, tired and headachy. If you feel like this after you have been discharged, tell your GP or the neurosurgery/endocrine unit as soon as possible. They should do a simple blood test to measure your blood electrolytes to see if your sodium level is low. If it is, you will be told to restrict your fluid intake to about ½ litre a day, and the problem will usually right itself. They may want to readmit you for a short while.

You may discover some stitches in your nostril or under your upper lip used to close the incision. These stitches are usually soluble. The wound will be completely healed in two to three weeks.

Hormone Replacement

Most patients will be given cortisol replacement as a drug called Hydrocortisone. In some hospitals, all pituitary patients are given these hormones; other hospitals restrict it to those patients with large tumours and those who have had surgery for Cushing’s disease.

Hormone replacement is often given as a precaution. The pituitary gland stimulates the Adrenal glands to make up the necessary anti-stress hormone (cortisol), without which you would rapidly become very ill. At first, hormone replacement will be administered in higher doses than needed and then reduced to normal levels.

Often, patients will be tested in the hospital and taken off hormone replacement before going home. Some patients will be sent home on hydrocortisone or prednisolone. If so, make certain you contact your GP so that you can continue the prescription until reviewed in clinic.

Those still on hormone replacement should carry a steroid card. It is crucial to educate yourself about emergency cortisol replacement in case of a serious injury or bad infection (such as flu). In cases such as these, you will need to double up on your dose in response to the extra stress. If the hydrocortisone need is long-term, patients should carry an SOS necklace or bracelet. See the resources section at the end of this leaflet for more information.

Craniotomy

If you have had a craniotomy for your tumour, most of the preceding notes also apply. Usually only a small amount of hair is shaved, this is often a thin strip along the line of the skin incision and thus isn’t very noticeable. When you wake up a small drain is usually under the skin of the forehead and you may have a headache. The incision is usually just behind the hairline, so that when everything settles down your hair will regrow and the incision is invisible. You may find that there is some swelling in the forehead and you may even have a black eye for a while caused by blood in the wound.

Most neurosurgeons use metal clips rather than stitches as these heal with a very neat scar and are quick to put in. These clips or stitches are removed between four and seven days following the operation.

Follow-Up

You will need to return to the hospital both shortly after the surgery and on a long-term basis.

After surgery, some hospitals follow you up in specialist pituitary clinics where you see the surgeon and an endocrinologist, and possibly even a radiotherapist (if you need or have had radiotherapy – your endocrinologist will usually explain this) at the same time. Others prefer individual follow-up, in which case you may need to go to more than one clinic.

It is usually possible to get your condition stabilised and, possibly with the help of additional medication and radiotherapy, to balance your hormones to the ideal state. This may take a couple of years. Most endocrinologists prefer long-term follow-up, maybe a visit initially every four to six months then every year or two. These visits give you an opportunity to ask the specialists about your particular case, and what the outlook is. You may find it useful to take a list of questions with you and again ask someone to come with you to help write down or remember the answers.

In many cases your long-term monitoring will be shared by your endocrinologist and GP. Because pituitary conditions are relatively rare, you might find that you will be the only patient with pituitary disease your GP is treating and (s)he might find it helpful to have a copy of our Pituitary Disease Factfile for General Practitioners.

Loss of Libido, Infertility and Relationships

You may suffer from a low sex drive, impotence or lack of self-esteem due to the imbalance of hormones and, in some cases, physical changes. This, in turn, may cause a strain on your relationship. There is also a possibility that you may have problems conceiving. It may help to talk to your partner about how you are both feeling and to consult your GP/endocrinologist. You may also wish to request a copy of our leaflet Psychological Issues in Pituitary Disease.

Other Factors to Consider

Returning to Work

The nurses will sort out a certificate to cover your stay in hospital and you will be advised how long you will be expected to remain off work. This usually depends on what your job is and whether you are self-employed or not.

Prescriptions

If you will have to take hydrocortisone, Thyroxine or desmopressin permanently you will get free prescriptions for all medicines. Ask at your GP’s surgery, hospital or pharmacist for form FP92 (EC92A in Scotland).

The form (which will need to be signed by your doctor) tells you what to do. You will then receive an exemption certificate. These certificates only last for a finite period after which they must be renewed. Your health authority may automatically send out an application for renewal.

Information about free prescriptions and the full list of medical conditions which qualify for exemption from prescription charges can be found in leaflet HC11, available from pharmacies and main Post Offices or on www.dh.gov.uk. If you are not sure whether you are entitled to free prescriptions, you must pay for your prescription and ask for a NHS receipt (form FP57 in England, EC57 in Scotland) when you pay; you can’t get one at a later date. This form tells you how to get your money back. You must claim within three months.

If you don’t qualify for free prescriptions and need more than five prescription items in four months, or more than 14 in a year, ask your pharmacist about pre-payment certificates. This will be more economical way of paying for a large number of prescription items.

Driving

You have a legal obligation to advise the Driver and Vehicle Licensing Agency (DVLA) if there is any reason why you should not drive. Many patients with pituitary conditions will find there are no restrictions on their driving, but you should check with your GP. The only condition likely to affect you is problems with your eyesight. Transsphenoidal surgery does not in itself limit your entitlement to drive. Your doctor or specialist will give you full advice. You may also seek extra advice from the DVLA by contacting the Medical Adviser, The Drivers’ Medical Branch, 2 Sandringham Park, Swansea Vale, Llansamlet, Swansea SA6 8QD. 0870 0600 0301. There is a 24 hours answering machine.

However, it is not a good idea to rush back to driving after any major operation, regardless of whether it is legal or not. Try to leave driving for a week after returning home and only drive for short journeys to start.

Alcohol and Replacement Hormones

There is no interaction between alcohol and these drugs, and you are allowed to drink in moderation. You should restrict yourself to one to two units of alcohol a day.

Insurance and Pensions

Each case will need to be assessed individually. As a guide, if a pituitary tumour has been completely removed, you will probably be accepted at normal rates. Of course, each insurance company will have its own practices. You need to persevere and be specific about your condition, as the people you speak to initially may not have any medical knowledge themselves. It is not unheard of, for instance, for diabetes insipidus to be confused with diabetes mellitus (sugar diabetes). If you would like more information, please email us on helpline@pituitary.org.uk or telephone 0845 450 0375.

Employment Issues

If your pituitary condition is causing you difficulties in retaining, seeking, or returning to employment, contact the HelpLine or your local Citizens Advice Bureau for the most up to date information about employment rights and where to get advice about benefits.

Personal Medical Identification

If you are taking hormone replacement medication, it is a good idea to wear a medical information bracelet or equivalent as the information will help the doctors if you have an accident and are unconscious.

Members have tried:

• MedicAlert® The MedicAlert Foundation, 1 Bridgewharf, 156 Caledonian Road, London N1 9UU. Tel: 0800 581420. Website: www.medicalert.org.uk
• MediTag, 37 Northampton Street, Hockley, Birmingham B18 6DU. Tel: 0121 200 1616. Website: www.medi-tag.co.uk.
• Doctag, 31-33 West Pilton Drive, Edinburgh, EH4 4HS. Email: info@doctag.net. Website: www.doctag.net.

Patient Story

This leaflet has been prepared for patients with pituitary conditions.  The aim of this page is to provide general information about pituitary surgery. It is written in general terms, therefore, not all of it will apply to you. Hopefully you will find it helps you to understand your condition better and gives you a basis for discussion with your GP, neurosurgeon or endocrinologist.

We would like to emphasise that all patients are different and you should always seek advice from your specialist or GP.

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