Patient guide

What is the first visit like?

The surgeon first asks when the problem started, what makes it worse or better, and what treatment you have had so far. Then there is an examination. Spine problems are diagnosed from the history, the symptoms, a physical examination and the results of tests and imaging. The same is true of brain tumours, where CT and MRI play a large part.

You do not have to decide about an operation at this visit. The first visit is for understanding the problem and talking about the options. Most patients with a slipped disc get better without an operation.

What to bring

• Imaging: the film or disc of your MRI, CT scan and plain X-rays, together with the radiologist’s written report. If you only have the report, bring that too, but the images themselves matter more.
• Records: test results, a nerve conduction study (if you had one), hospital files, discharge papers and notes from earlier doctors.
• A list of medicines: the name and dose of every prescription medicine, over-the-counter medicine, herbal remedy and supplement. Write down blood thinners (such as warfarin or aspirin), diabetes medicine and anti-seizure medicine in particular.
• Allergies: any allergy to medicines or other substances.
• Surgery and health history: earlier operations (even on other parts of the body), heart disease, diabetes, high blood pressure, lung or kidney disease.
• ID and insurance papers. If you want to use insurance, ask the secretary or the support team before the visit which documents are needed.

If you have not had an MRI yet, ask the clinic whether you need one before you get it. For nerve pain from a disc with no warning signs, an MRI is usually not recommended before six weeks. If you do have a warning sign (weakness, numbness in the saddle area, bladder or bowel problems), do not wait for a visit; read the section “When should I call urgently?”

Write down before the visit

• Exactly where is the pain? Where does it start and where does it go (for example from the back down the back of the thigh and calf)?
• When does it get worse or better? Sitting, standing, walking, coughing, night, morning.
• When did it start and how has it changed? Was it sudden or slow?
• Numbness, weakness or tingling: where, and since when? If your leg drags or you drop things, write it down.
• Bladder or bowel problems, or numbness in the saddle area (even slight). Be sure to say so.
• Earlier treatment and what it did: medicine, physiotherapy, injections.
• If you have headache, seizures, blurred vision, changes in behaviour or confusion: how long, and how severe?

A short note on your phone is enough. Visit time is limited, and stress makes us forget things.

Questions you can ask

• What exactly is my problem? What does this image mean?
• Do my symptoms match the image?
• Is an operation needed now? If not, what treatment do we start and how long do we wait?
• What happens if I do not have surgery? Is there a risk of nerve damage?
• Which signs mean I should come back sooner?
• If an operation is needed: what kind, with what benefit and what risk? What is the anaesthetic like? How long will I stay in hospital and when can I go back to work?
• How do I carry on with daily activities? Driving, work, exercise?
• When is the next follow-up and what scan or test is needed?

Who should come with you?

If possible, bring a family member. The subject is frightening, and two people remember better. You can ask the surgeon to repeat the explanation simply or to write it down. Ask permission and note the answers.

After the visit

If you did not understand something, or think of a question later, call the clinic. If you want to hear another doctor’s opinion, keep your documents and images and take them with you.

First of all

This page is general guidance. If the clinic or hospital has given you written instructions, those come first, especially about fasting and medicines. If two instructions differ, ask before the operation.

Before the consent form

Brain and spine surgery is a big decision. Before you sign, ask, and write down the answers:

• Why is the operation suggested and what are the alternatives? (What happens if I do not have it?)
• What will it treat and what will it not treat? Might some pain remain?
• What are the risks of this operation for me? Benefits and risks must be weighed, and there is no guarantee surgery will help every patient.
• What is the anaesthetic like, and which of my health conditions matter for it?
• How long will I stay in hospital? How long until I can go back to work and drive?
• Will I need physiotherapy or help at home after the operation?
• What are the cost and insurance cover? (Ask reception and the secretary about cost.)

General health before the operation

• Smoking. Stopping smoking some weeks before surgery lowers the risk of breathing problems and makes the anaesthetic safer; the sooner the better. If stopping is not possible, cutting down is better than nothing. Nicotine also weakens disc tissue.
• Weight. If you are overweight, losing weight lowers some anaesthetic risks.
• Teeth. A loose tooth or loose crown may need treatment before the operation, because it can be damaged when the breathing tube is placed.
• Other conditions. If you have diabetes, asthma, heart or thyroid disease, or high blood pressure, have a check-up with your usual doctor before the operation.
• Infection and acute illness. If in the days before surgery you get a cold, cough, urine infection, diarrhoea, vomiting or a flare-up of a skin condition, tell the surgical team.

Medicines

• Take a full list of your medicines (prescription, over-the-counter, herbal and supplements) with you.
• Do not stop your medicines unless your doctor or anaesthetist tells you to.
• Blood thinners, aspirin, diabetes medicine and herbal remedies have separate instructions. Write the instruction down and follow it exactly.
• Stop or continue anti-seizure or blood pressure medicine only on a doctor’s advice.

Fasting

The reason is that during anaesthesia the contents of the stomach could get into the lungs. Your hospital’s instruction is what counts. One example: water and clear fluids until 2 hours before admission, and anything else (food, milk, tea with milk, snacks, chewing gum) until 6 hours before. Some hospitals use other times. Following the instruction matters; otherwise the operation may be cancelled.

A few days before the operation

• Arrange someone to take you to the hospital and bring you back, and to stay with you on the day.
• Have someone at home with you after the operation, at least for the first days.
• Take loose, comfortable clothes, non-slip slippers and your personal things. Take your images, reports and medicine list too.
• Get your home ready: put things you use often at waist height so you do not have to bend, clear the walking route of rugs and cables, and put a night light by the bed.
• Arrange work and leave now. Returning to work after lumbar decompression surgery usually takes about 4 to 6 weeks, but your team decides.
• Remember that the risk of a blood clot after surgery continues even after you go home and may appear weeks later; ask the treatment team about prevention.

On the day

• Do not smoke.
• Take your medicines as the team told you, unless you were told not to.
• If you have a cough, fever or an acute illness on that day, call before going to hospital.
• Lumbar decompression surgery usually takes 2 to 4 hours or more. Ask reception where your family can wait and how they will get news.

After the operation in hospital

After you wake up, you stay in the recovery area and then go to the ward. You may have a drip and a urinary catheter; the catheter is usually removed after a day or two. The nurses help you to get up as soon as you can. Going home after a back operation is usually 2 to 5 days later and varies with the type of operation.

The next page is about caring for your wound.

First of all

The instructions of your surgeon and nurse always come first. Each surgeon closes the wound in their own way, and the advice on washing and on removing stitches varies. Before you leave hospital, ask:

• What is the wound closed with (dissolving stitches, ordinary stitches, staples or glue)?
• When and where will the stitches be taken out?
• When can I shower?
• Which number do I call outside office hours?

Save the number on your phone and write it on paper by your bed.

Daily care

To look after the wound:

• Keep the wound clean and dry. If the dressing gets wet, take it off, dry the wound with a clean towel and put on a fresh dressing.
• If you have a dressing that the team has not told you to remove, do not touch it. Do not touch the dressing, the wound or a wound drain, because germs from the hand can get into the wound.
• Stitches or staples: a nurse or doctor can take them out, and you need to book for the time given. 24 hours after the stitches or staples are out you no longer need a dressing and can shower normally. Follow your own team’s instructions on this.
• After brain surgery: you can bath or shower, but the wound must stay dry until the stitches or staples are out. After that you can wash your hair with a mild shampoo. Stitches or staples are usually taken out 5 to 10 days after the operation (sometimes later). Stitches under the skin dissolve with time.

What is normal?

• Numbness and tingling around the wound. For a scalp wound this is normal and may last several months.
• Pain that eases over weeks with the painkillers you were prescribed, so that you gradually take less. Do not suddenly stop nerve-pain medicine (such as gabapentin) without talking to a doctor. After brain surgery, headache may last for a while, so keep taking painkillers as instructed.

Signs of infection

Any of these means: contact the treatment team or a doctor the same day. If you can, take a photo of the wound to show them:

• redness, warmth or swelling that is spreading
• wound pain that is getting worse
• discharge or pus (often green or yellow) or a bad smell
• the edges of the wound opening
• a fever that does not go away, or feeling generally unwell, even if the wound looks fine

Wound infection usually appears from a few days after surgery up to about 2 to 3 weeks, but sometimes has been seen months later.

Fluid from the wound

Take any discharge from the wound seriously. A “leak of spinal fluid” is among the serious complications of lumbar decompression surgery, so contact the hospital straight away if there is discharge from the wound. Spinal fluid is watery and clear. So if clear, watery fluid comes from the wound, contact the surgical team the same day without delay. If it comes with a fever, severe headache or a stiff neck, call 115 at once or go to an emergency department (115 is Iran’s emergency number).

What not to do

• Do not touch the wound, the dressing or a wound drain.
• Do not remove stitches or staples yourself.
• Put any ointment or cream on the wound only with your surgeon’s permission.

After brain surgery: signs to report

If you have a worsening headache, a stiff or painful neck, discharge from the wound or a fever, call the surgical team the same day; if you cannot reach the team, call 115. If you have new or worse weakness in an arm or leg, new trouble speaking, a seizure or fainting (if you have not had one before) or marked drowsiness, call 115 at once. Details are on the pages “The first days after brain surgery” and “When should I call urgently?”.

If you are not sure

If you do not know whether something is normal, call. The treatment team would rather be told once for no reason than find an infection late.

First of all

The speed of recovery differs from patient to patient and depends on the type of operation (disc, stenosis, fusion), age and general health. Your surgeon or physiotherapist gives you the exact plan. The surgeon also decides when you go back to work, driving and sport. The times on this page are examples and do not replace your team’s instructions.

The first weeks: slowly, but do not stay still

Aftercare after spine surgery:

• For the first 6 to 8 weeks, build up activity slowly.
• Start with walking and do a little more as you can.
• Avoid lifting heavy loads and movements that twist or bend the back.
• Listen to your body. Do not do anything that hurts or is too much.
• After 8 weeks you can start low-impact exercise such as swimming or a stationary bike.

Some discomfort is normal when you gradually return to normal activity, but pain is a signal to ease off. Supervised physiotherapy helps some patients.

Do not stay still too long

For back pain and sciatica, avoid sitting or lying for long periods. Movement is painful but not harmful, and it helps recovery. This advice is general and, after surgery, should fit with your surgeon’s instructions.

An example timeline

For lumbar decompression surgery:

• Going home: about 2 to 5 days after the operation
• Back to work: about 4 to 6 weeks, depending on the job and the doctor’s opinion
• Full return to normal activities: up to about 12 weeks
• Driving and contact sport: avoid them during recovery; the surgeon gives the time. This source gives no set number for driving.
• Painkillers may be needed for a few weeks. Physiotherapy helps with movement and occupational therapy with daily tasks.

Jobs with heavy loads or long sitting may need a separate plan. Talk to your surgeon and your employer.

Pain medicine

As the pain eases, take the medicine less often or in smaller amounts. Note down what you take and when. Do not reduce or stop nerve-pain medicines such as gabapentin, amitriptyline and pregabalin without a doctor’s advice, especially if you were taking them for a long time before the operation.

Preventing clots

There is a risk of a blood clot after surgery, and it may continue after you leave hospital. Follow the preventive measures the treatment team gave you. The signs are:

• throbbing pain or cramp in the calf or thigh of one leg
• new swelling in one leg
• red, blue or darker skin
• a leg that feels warm

If you see any of these, contact a doctor the same day. If they come with shortness of breath or chest pain, call 115 at once (115 is Iran’s emergency number).

Signs that mean tell someone now

After spine surgery, if any of these happen:

• new pain, weakness or numbness in a leg, or it getting worse
• trouble passing urine or stool, or numbness in the saddle area (115 or emergency department at once)
• redness, warmth, itching or discharge from the wound
• fever or feeling unwell

In all of these situations, contact your care team, or 115 (Iran’s emergency number), at once. The full list is in “When should I call urgently?”.

A few tips

• Write a short, regular walking plan for each day and add a little every few days.
• Keep a notebook: how far you walked, how the pain was, what medicine you took.
• If an exercise or task makes the pain worse, step back a few days and tell your physiotherapist or surgeon.
• At follow-up, say every worry. The surgeon wants to know.

First of all

Brain surgery is a heavy experience for the patient and the family. This page puts the usual medical advice in plain words. The instructions of your own surgical team always come first. If you do not know something, ask; no question is out of place.

In hospital

• In the usual operation (a craniotomy), the surgeon temporarily removes part of the skull to reach the brain and then puts it back.
• After the operation a temporary drain may be left in the fluid spaces of the brain while the brain heals.
• A rehabilitation team (physiotherapy, speech therapy, occupational therapy) sees the patient if needed. These services are also used after treatment for a brain tumour and a haematoma.
• The surgical team decides when the patient goes home. It is best if someone is with the patient on discharge day and stays with them at home.

What may be normal

These are usually normal:

• Headache may continue for some time after the operation. Keep taking painkillers as instructed.
• Numbness and tingling around the wound, which may last several months.
• A lot of tiredness. Heavy tiredness is among the possible effects after brain tumour treatment.
• Trouble concentrating or remembering, changes in speech, vision or movement, and changes in mood. Some of these can appear months or years later. If you notice them, tell the team; physiotherapy, speech therapy, occupational therapy and psychological counselling help.

None of this means the patient is at fault or “weak”. Illness and brain surgery tire the body.

Wound care

• Keep the wound clean and dry and leave the dressing in place.
• Do not get the wound wet until the stitches or staples are out. After they are out, wash your hair with a mild shampoo.
• Stitches or staples are usually removed 5 to 10 days after the operation (sometimes later) (by a doctor or at a clinic). Stitches under the skin dissolve by themselves.
• Look at the wound every day: discharge, more redness or swelling, more pain.

Details are on the “Wound care” page.

Blood clots

After discharge, wearing anti-clot (anti-embolism) stockings is advised: day and night, for at least two weeks and until your movement is back to normal. Check the skin of your legs every day and do not leave the stockings off for more than 30 minutes. Ask your own team for their instruction. If you cannot put the stockings on or take them off properly, say so before you go home.

Work, driving and activity

• Work: returning to work depends on how you feel and on your job, and about 6 weeks off work is not unusual.
• Driving: you must tell the licensing authority and your insurer, because there may be restrictions. Your surgeon tells you the exact rule; ask before you drive.
• Alcohol: read the labels on your medicines and ask the surgeon.

Signs to report straight away

If any of these happens, call the surgical team or the surgeon the same day. If you cannot reach the team, call 115:

• a worsening headache
• pain or stiffness in the neck
• discharge from the wound
• a fever or high temperature

Call 115 at once (115 is Iran’s emergency number) and do not wait for the team to call back if: there is new or worse weakness in an arm or leg, new trouble speaking, a seizure or fainting (if you have not had one before), marked drowsiness, the person has a seizure or cannot be woken, a sudden and very severe headache, sudden weakness on one side of the body, a drooping face or trouble speaking, shortness of breath or chest pain. The full list is in “When should I call urgently?”.

For the family

• Choose one person to be in touch with the treatment team so that information is not lost.
• Write questions down and ask them at the visit.
• You will get tired too; accept help from others.
• If the patient’s mood changes or they lose interest, do not take it personally. Tell the team.

Follow-up

For benign tumours, because a tumour can come back, follow-up and scans are usually needed for at least several years. Take follow-up seriously. The surgeon sets the times.

First of all

This list does not replace an examination. When in doubt, call. No doctor minds an unneeded call, but reporting late may be impossible to put right.

• 115 is Iran’s emergency number. In any emergency, the number to call is 115.
• Do not drive yourself. Ask someone to take you or call an ambulance. Take the medicines you use with you.
• The treatment team’s number: before you leave hospital, ask the surgeon or nurse which number to call during and outside office hours, and write it by your bed or on your phone.
• Do not wait for an appointment or for the clinic’s opening hours.

Call 115 or go to an emergency department at once

Back and neck: severe pressure on the nerves at the bottom of the spine

If you have back or leg pain and any of these come with it:

• numbness or reduced feeling around the anus or genitals
• being unable to pass urine, trouble starting to pass urine, or loss of control of urine
• losing the sense of needing to open your bowels, or loss of control of stool
• pain, tingling, weakness or numbness in both legs, or weakness that is getting worse
• a change of feeling in the genitals during sex, or new trouble with erections

This group of signs is called cauda equina syndrome. It is rare but serious, needs emergency admission, and the longer it goes untreated, the greater the chance of permanent paralysis and incontinence.

Back pain after an injury, or with chest pain

These two are not cauda equina syndrome, but they are emergencies too. If you have either of them, call 115 at once:

• back pain after a heavy blow or a car crash
• chest pain together with back pain

A sudden and very severe headache

If a headache starts suddenly, is extremely painful and does not go away (called a “thunderclap headache”), it may be a sign of bleeding under the arachnoid membrane of the brain. At the same time there may be: neck pain or stiffness, nausea and vomiting, discomfort in light, a seizure, fainting or confusion. These symptoms can start while coughing, going to the toilet, lifting something heavy or during sex.

Signs of a stroke

Stroke signs are remembered with the word FAST. If you see any of these, call at once:

• Face: one side of the face has dropped, or smiling is hard
• Arms: the person cannot raise both arms and keep them there
• Speech: speech is slurred or confused
• Time: time matters; call at once

Get help straight away even if the symptoms go after a short time, because you may think you are well again. Tell someone if these signs were present in the last 24 hours. Weakness or numbness on one side of the body, problems with vision (blurring or loss of sight in one or both eyes) and trouble finding words are also signs.

A seizure

Call 115 in these situations:

• it is the first seizure ever
• the seizure lasts longer than is usual for that patient, or, if you do not know the usual length, more than 5 minutes
• the person does not return to normal as usual afterwards, or another seizure starts before that
• three or more seizures in 24 hours
• the person was seriously hurt in the seizure
• the person passed out and is not coming round, or breathing is hard

A seizure usually lasts from a few seconds to a few minutes and ends by itself. A patient with epilepsy who has a written care plan can follow it.

After a blow to the head

If someone has hit their head and:

• lost consciousness and has not come round, or cannot stay awake or keep their eyes open
• has had a seizure
• fell from more than a metre or about five stairs
• has problems with vision or hearing
• has clear fluid from the ear or nose, blood from the ear, or bruising behind the ear
• has a black eye, but did not hit their eye
• has new numbness or weakness, or trouble walking, with balance, understanding, speaking or writing
• was hit at high speed, such as in a car crash
• has a head wound with an object in it, or a dent in the bone
• is behaving differently (irritable, distracted, uninterested)
• is being sick (vomiting)
• has a condition that thins the blood, or takes medicine that thins the blood
• is under 1 year old and has a bruise, swelling or a large cut on the head

Fever, severe headache and a stiff neck

If a person over 5 years old has any of the signs of meningitis, it is an emergency: a very severe headache, a stiff neck and being unable to look at light, a rash that does not fade when a glass is pressed on it (on dark skin, check the palms, soles, mouth and eyes), a very high or very low temperature, or a first seizure. After brain surgery, report a fever and a stiff or painful neck to the surgical team the same day. If a fever comes with a severe headache and a stiff neck and you cannot reach the surgical team quickly, call 115.

After brain surgery: weakness, speech, seizure or drowsiness

If any of these happens after brain surgery, do not wait for the team to call back. Call 115 at once:

• new weakness, or worse weakness, in an arm or leg
• new trouble speaking
• a seizure or fainting, if you have not had one before
• marked drowsiness

After surgery: a clot in the lung

If, after an operation, you suddenly:

• become short of breath
• have chest pain or pain in the upper back that is worse when you breathe
• cough up blood
• have a very fast heartbeat or faint

this could be a pulmonary embolism, a clot that has travelled from the veins of the leg to the lung. It is life-threatening and needs immediate treatment. The risk of clots after surgery lasts for weeks, even after you go home.

Contact the surgical team or a doctor the same day

Signs of a wound infection

• redness, pain, warmth or swelling around the wound that is increasing
• discharge or pus (often green or yellow) or a bad smell
• the edge of the wound opening
• a fever that does not go away, or feeling generally unwell, even if the wound seems fine

Infection usually appears from a few days to 2 or 3 weeks after an operation, but sometimes months later.

Watery fluid from the wound

After spine or brain surgery, report any discharge. A leak of spinal fluid is one of the serious but uncommon complications of back surgery and may need another operation. If clear, watery fluid comes from the wound, call the same day. If it comes with a fever, severe headache or a stiff neck, call 115 at once.

After brain surgery

If any of these happens, call the surgical team the same day. If you cannot reach the team, call 115:

• a worsening headache
• pain or stiffness in the neck
• discharge from the wound
• a fever

A clot in the leg (deep vein thrombosis)

If you think you have a clot, contact a doctor the same day. The signs are:

• throbbing pain or cramp in the calf or thigh of one leg (rarely both)
• swelling of one leg
• red, blue or darker skin (harder to see on dark skin)
• a swollen vein

If it comes with shortness of breath or chest pain, call 115 at once.

After spine surgery

After lumbar decompression surgery, if you get new pain, weakness or numbness in a leg, contact the surgical team or the hospital at once. If you have trouble controlling your bladder or bowel, or numbness in the saddle area, call 115 at once.

Other things not to put off

• a worsening headache, or a headache that is different from earlier ones or wakes you at night
• changes in vision such as spots, flashing lights or sudden blurring, or vomiting for more than two days
• a severe headache that does not ease with painkillers after a blow to the head, or confusion and memory loss
• sudden severe back pain that gets worse quickly, or back pain with feeling unwell and a fever (contact your care team at once, or 115)

See a doctor as soon as you can

For back pain, make an appointment with these signs:

• pain that has not improved after several weeks of home treatment
• weight loss with no reason
• a lump or change of shape in the back
• pain at night, or pain that does not ease with rest
• pain that gets worse with coughing, sneezing or opening the bowels
• pain between the shoulder blades (instead of the lower back)

If you are not sure

If you do not know whether a sign is dangerous, call. A doctor or nurse would rather be told once for nothing than have a serious sign reported late.