Coming home: What to expect after your craniotomy / craniectomy neurosurgery

Why I created this document
I compiled this document in the hope that it might be useful to others like me who left hospital following brain surgery with virtually no guidance as what to do next. It is entirely possible that armed with information like this the incision might not have gone septic and I may have avoided the craniectomy and all that went with it.

This information enclosed is based on my personal experience after two brain surgery operations and content gathered from the Internet; see the See also section at the end for major sources.

Caveat
Be aware I am a patient, not a doctor and this is not an authorised medical document, just tips and ideas that I found helpful. Please check with your doctor or consultant before following the suggestions below.

After your craniotomy / craniectomy

 * Every day, check your incision (the cut the doctor made during surgery).

Things to expect

 * Infection following brain surgery is surprisingly common.
 * As your incision heals you may have some itching, burning or numbness around it. This is usual. You may also find the area more tender than usual. It is usual for your incision to be a little bit swollen and red. This should improve after a few weeks.
 * Your eye may swell shut, or you may have a black eye. This is normal. The eye should recover in a few weeks.
 * I found that my temporal muscle (the muscle to the side of the eye) had been torn by the first procedure and this remained badly swollen, together with my jaw muscle. These muscles were still tender and swollen more than three months after the first procedure. Although I never managed to get a definitive explanation for this, doctors behaved as though this was entirely normal.
 * You will probably feel exhausted doing the slightest task. It may take up to a year to get back to your usual energy level. It is very important to get extra rest so your body can heal after your brain surgery.
 * Headaches are common following surgery. Following the craniectomy I found that bending over, eg: picking items up from the floor, would give me an immediate headache. If bent over for a few minutes, I would suffer a migraine-type headache for 3 hours or so.  Discuss this with your doctor/GP if this becomes problematic and they should be able to provide medication to alleviate this. I found the headaches were greatly reduced once I had stopped taking the anti-epileptic,  Keppra (Levetiracetam).  Though this might just have been due to the time that had elapsed since the operation.

What's that tiny scar at the front, back, side of my head?
I had a small scar, with one suture (stitch) on my forehead and always thought that it was a wound I picked up during my fit. It turns out it was one of the 3 positions where the 3 point Mayfield skull clamp was fitted. It is used to hold the head very steady during the operation procdure.

Hygiene and safety

 * Ensure the sutures (stitches) or staples are removed between 7 to 14 days following the surgery.
 * Always keep your wound site scrupulously clean. I found Elasticated Hair Nets designed for food preparation were ideal for keeping the wound site clean after the stitches and dressing had been removed. They are not expensive, can be changed daily or more often.
 * Cover your head with a hat, cap, scarf, etc. if you go out, especially if it's sunny.
 * Do not lie down with your head flat. Use pillows to prop it up.
 * It is important for you not to get constipated. This is because straining to pass a bowel movement puts stress on and around your incision. Use stool softeners or laxatives that you can buy without a prescription. Call your GP if you are still constipated.
 * NEVER touch or pick at your incision.
 * If you are issued a helmet to protect your skull following your craniectomy, wear it at all times or as advised by your doctor or consultant, otherwise the smallest trip could be fatal.

Washing, bathing and showering

 * Do not go swimming unless your doctor tells you that it's ok to do so.
 * You should be able to bath and wash your hair 7 days after your surgery once you feel able, unless advised otherwise by your doctor.
 * Do not let your incision soak in water.
 * Use a very mild shampoo, baby products are ideal.
 * Gently pat soapsuds over your incision - do not rub on it. Let water and soap run down over the incision - do not spray water right on it. Gently pat it dry with a towel.
 * Do not use a hair dryer, cream, ointment or hair products on your incision.

Eating and drinking

 * Eat healthily and avoid junk food. Your doctor will be able to arrange for you to see a dietician if you need advice about this.
 * Drink lots of fluids but try to avoid alcohol.

Exercise & socialising

 * Do not do things that need a lot of energy. Do not play any sports where you may bump or run into another person. Wait to do these things till your doctor tells you that it is ok.
 * Walking is a good way to get back your strength. Every day, take a few short walks, going a little longer each day. If the weather is very hot, cold or wet, do not go out. Stop walking if you are tired or in pain.
 * It is ok to go back to having sex when you feel well enough.
 * Do not smoke cigarettes or cigars, and avoid other people’s smoke.

Driving after an epileptic fit

 * Do not drive any motor vehicle until your doctor tells you it is ok. In the UK you should advise the DVLA that you have suffered an epileptic fit. This will automatically remove your entitlement to drive.
 * This compulsory notification only applies to someone that has experienced an epileptic fit, someone that has experienced a craniotomy or a craniectomy - see [[Media:DVLA Fitness to drive.pdf|For Medical Practitioners - Guide to Medical Standards of Fitness to Drive (2013)]]. For these three conditions, you will loose your entitlement to drive for 1 year from the date of the incident or operation.  This period may be extended based on information the DVLA receive from your medical consultant.

Maxillofacial Surgery (cosmetic reconstruction)
If you have had a craniectomy it is possible that you will require cosmetic reconstruction to fit a titanium plate in place of the removed bone-flap. The branch of medicine that covers this (in the UK) is Maxillofacial Surgery. Although the appointment letter is confusingly entitled King's College Dental Hospital and makes reference to referral from a Dentist, it is in fact regarding cranial reconstruction.

Contact the emergency services immediately if:

 * You have trouble breathing.
 * You have a seizure (fit) and you have not had one before.
 * You have more seizures (fits) than usual.
 * You have a seizure (fit) that is not the type of seizure you usually have.
 * You have trouble urinating (peeing) or having a bowel movement.
 * You are not able to control when you urinate (pee) or have a bowel movement.

Contact your hospital immediately if:

 * You feel feverish or have a temperature of 38.5° Celsius (101.5° Fahrenheit) or more.
 * Your incision or the skin around it is very sore or becomes more red.
 * Fluid builds up under the incision and puts pressure on it.
 * You have blood, pus or liquid seeping from any part of your incision.

Contact your doctor right away if:

 * You are confused or have trouble remembering things.
 * You see or hear things that nobody else sees or hears (hallucinations).
 * You have big changes in your mood or the way you usually act.