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Surgery
If surgery is the path you are taking it is important to have ruled out ALL other possible causes of your symptoms. Surgery comes with its own risks and can bring new challenges. It is important to have researched the surgeon that is going to perform your operation. Due to the cyst/tumours central location in the brain it is a complicated and risky procedure and you want to know that your surgeon has experience of operating in this area of the brain.
So you've ruled everything out, you've found a surgeon and you've set the date! Here's some useful information on what to expect pre and post surgery!
Firstly it is important to know the risks of surgery and that no two recoveries are the same. Everyone's experience of surgery is different.
In the lead upYou will normally be asked to have a pre op MRI with contrast dye a few days prior to your surgery. This scan may take longer than previous scans as it will be more detailed to map out the exact location of your cyst or tumour. You will meet with a nurse a few days before to go over your admission paperwork and to go over any questions you may have about surgery. Your anesthetist may also want to see you a few days prior to your surgery or may even call you the night before. In the days leading up to surgery try to relax as much as possible, if you like massages go for a head massage as it will be awhile before you will be able to get one again. Drink lots of water the day before to make sure you are well hydrated. When packing for the hospital stay remember to take pajamas and tops that button up at the front as it will be difficult for you to pull anything over your head. Your neck and arms are going to be a bit sore too.
On the day of surgeryRemember to take your pre op scan, medical insurance if applicable, and your living will/advanced care directive to the hospital with you. It's understandable that you will be feeling nervous on the day of surgery. Try these grounding techniques to help you keep calm.
You will be fitted with a catheter this may be inserted whilst you are under anesthetic. You will also be fitted with a Peripherally inserted central catheter or PICC line for short. A PICC line is a thin flexible tube that is inserted in your arm. The tube is threaded into a large vein above the right side of the heart. It is used to administer medication directly into the blood stream in the event of an emergency.
During surgery your loved ones may be given a login to a tracking app. The app allows anyone with the link and code to follow the progress of your surgery.
On waking up from surgery you may or may not be feeling nauseous and you may or may not have pain straight away. Unfortunately your head is going to hurt at some point, you just had major brain surgery! It is important to keep up with your pain relief medication. You will have been unaware of the fact that your head will have been placed in a clamp during surgery. This clamp will leave some very small superficial puncture marks on your scalp and you may have a small amount of dried up blood at these points. The incision at the back of your head is going to cut through some of your neck muscles and your nerves. Your neck is going to be stiff and sore and you will lose sensation to a large part of your scalp. The nerve ending take up to a year to regrow and it will take this long for you to fully regain sensitivity.
The days that followWhen you return home it is important to ask your caregiver to keep a chart of when your medications are due and how much to take. Don't forget to take your medication regularly as it will take you sometime to get your pain back under control if don’t keep on top of it!
Sleep as much as you can as your brain will heal best whilst you are sleeping. It's a good idea to sleep at a 45 degree incline to help excessive fluid from building up in the brain adding to your discomfort. Try to keep your room as dark as possible, avoid TV, and any digital screens especially your phone for at least the first week. It will really help with your recovery and your vision. If you jump on a screen too soon you may experience temporary double vision.
You are not going to be able to easily lift your arms above your head for a few days due to a sore neck and arm where your PICC line was inserted. It is a good idea to have a shower chair in the bathroom and to have someone help you wash for the first week at home. Remember not to get your incision wet until you have had your stitches or staples removed, you will not be able to wash your hair during this time and it is going to drive you crazy! Don't be tempted to touch or pick your incision. Most people have their stitches or staple removed at around 10 days after surgery. Make sure you don't bend forward and it is important to keep your heart above your head. It is important not to lift anything more than a glass of water after surgery. Lifting and straining can cause hemorrhaging.
A combination of the anesthetic and all the pain meds are going to make you very constipated. Which brings me back to my last point you can NOT strain when going to the bathroom. Make sure you drink lots of prune or pear juice, eat liquorice and take stool softener tablets (just check with your nurse before taking the tablets) Make sure you take short walks each day 10 or 15 minutes at a time, don't push yourself it's not a race!
DietEat healthy, lots of fresh fruit and vegetables and protein. The body needs protein to heal. Drink plenty of water! Also it's a good idea to have a glass of cranberry juice a day as this will help keep away any possible urinary tract infections due to having had a catheter.
Days 5 to 7It's at this mark your brain is likely to swell a bit and you may experience a rough few days.
Days 7 to 9You are most likely going to have an emotional crash! Your body has been through a lot and you may have a headache. After surgery we expect our symptoms to instantly go, we no longer have the cyst or tumour so therefore surely the symptoms must instantly go! The truth is your body has just been through MAJOR surgery, it's going to take some time to get over the trauma of that surgery. You will have been on a lot of pain medication by this point and the anesthetic is starting to work its way out of your body. Don't forget it takes some time to come to terms with all that has just happened, remember this is a huge life event! Your life here on in is going to be two distinct chapters, life before brain surgery and life after brain surgery! but remember you are here and you are still alive and kicking!
Some things to expect over the following months
It's important to note that some people return to work after only a month with a complete resolve of their symptoms, whilst others may take up to a year or more to recover. In a few cases some never return to work again and surgery has bought its own set of challenges.
It has been said may times that recovery is not a straight line and you have to take the good days with the bad. Listen to your body as it knows best!
Jo Warren | August 2018
So you've ruled everything out, you've found a surgeon and you've set the date! Here's some useful information on what to expect pre and post surgery!
Firstly it is important to know the risks of surgery and that no two recoveries are the same. Everyone's experience of surgery is different.
In the lead upYou will normally be asked to have a pre op MRI with contrast dye a few days prior to your surgery. This scan may take longer than previous scans as it will be more detailed to map out the exact location of your cyst or tumour. You will meet with a nurse a few days before to go over your admission paperwork and to go over any questions you may have about surgery. Your anesthetist may also want to see you a few days prior to your surgery or may even call you the night before. In the days leading up to surgery try to relax as much as possible, if you like massages go for a head massage as it will be awhile before you will be able to get one again. Drink lots of water the day before to make sure you are well hydrated. When packing for the hospital stay remember to take pajamas and tops that button up at the front as it will be difficult for you to pull anything over your head. Your neck and arms are going to be a bit sore too.
On the day of surgeryRemember to take your pre op scan, medical insurance if applicable, and your living will/advanced care directive to the hospital with you. It's understandable that you will be feeling nervous on the day of surgery. Try these grounding techniques to help you keep calm.
- Take deep slow breathes in and out.
- Focus on one thing you can see in the room, really focus on its shape, colour and texture.
- Listen to one sound in the room, really focus in on hearing it in isolation.
- Hold a loved one’s hands, feel how soft, rough, warm or cold they are.
- All the while taking deep slow breathes in and out.
You will be fitted with a catheter this may be inserted whilst you are under anesthetic. You will also be fitted with a Peripherally inserted central catheter or PICC line for short. A PICC line is a thin flexible tube that is inserted in your arm. The tube is threaded into a large vein above the right side of the heart. It is used to administer medication directly into the blood stream in the event of an emergency.
During surgery your loved ones may be given a login to a tracking app. The app allows anyone with the link and code to follow the progress of your surgery.
On waking up from surgery you may or may not be feeling nauseous and you may or may not have pain straight away. Unfortunately your head is going to hurt at some point, you just had major brain surgery! It is important to keep up with your pain relief medication. You will have been unaware of the fact that your head will have been placed in a clamp during surgery. This clamp will leave some very small superficial puncture marks on your scalp and you may have a small amount of dried up blood at these points. The incision at the back of your head is going to cut through some of your neck muscles and your nerves. Your neck is going to be stiff and sore and you will lose sensation to a large part of your scalp. The nerve ending take up to a year to regrow and it will take this long for you to fully regain sensitivity.
The days that followWhen you return home it is important to ask your caregiver to keep a chart of when your medications are due and how much to take. Don't forget to take your medication regularly as it will take you sometime to get your pain back under control if don’t keep on top of it!
Sleep as much as you can as your brain will heal best whilst you are sleeping. It's a good idea to sleep at a 45 degree incline to help excessive fluid from building up in the brain adding to your discomfort. Try to keep your room as dark as possible, avoid TV, and any digital screens especially your phone for at least the first week. It will really help with your recovery and your vision. If you jump on a screen too soon you may experience temporary double vision.
You are not going to be able to easily lift your arms above your head for a few days due to a sore neck and arm where your PICC line was inserted. It is a good idea to have a shower chair in the bathroom and to have someone help you wash for the first week at home. Remember not to get your incision wet until you have had your stitches or staples removed, you will not be able to wash your hair during this time and it is going to drive you crazy! Don't be tempted to touch or pick your incision. Most people have their stitches or staple removed at around 10 days after surgery. Make sure you don't bend forward and it is important to keep your heart above your head. It is important not to lift anything more than a glass of water after surgery. Lifting and straining can cause hemorrhaging.
A combination of the anesthetic and all the pain meds are going to make you very constipated. Which brings me back to my last point you can NOT strain when going to the bathroom. Make sure you drink lots of prune or pear juice, eat liquorice and take stool softener tablets (just check with your nurse before taking the tablets) Make sure you take short walks each day 10 or 15 minutes at a time, don't push yourself it's not a race!
DietEat healthy, lots of fresh fruit and vegetables and protein. The body needs protein to heal. Drink plenty of water! Also it's a good idea to have a glass of cranberry juice a day as this will help keep away any possible urinary tract infections due to having had a catheter.
Days 5 to 7It's at this mark your brain is likely to swell a bit and you may experience a rough few days.
Days 7 to 9You are most likely going to have an emotional crash! Your body has been through a lot and you may have a headache. After surgery we expect our symptoms to instantly go, we no longer have the cyst or tumour so therefore surely the symptoms must instantly go! The truth is your body has just been through MAJOR surgery, it's going to take some time to get over the trauma of that surgery. You will have been on a lot of pain medication by this point and the anesthetic is starting to work its way out of your body. Don't forget it takes some time to come to terms with all that has just happened, remember this is a huge life event! Your life here on in is going to be two distinct chapters, life before brain surgery and life after brain surgery! but remember you are here and you are still alive and kicking!
Some things to expect over the following months
- Your hair may thin due to the anesthetic it will grow back in time.
- You are going to lose sensation in your scalp for about a year, but bit by bit the nerves that were cut during surgery with start to repair.
- You may experience short episodes of double vision it normally passes.
- You may experience white flashes in the corner of your eyes for a short time.
- You may experience facial twitching again this may pass.
- You may still experience headaches and discomfort on and off for some time as the brain can swell on and off for up to a year after surgery.
- You will have a permanent dent in the back of your skull.
- The back of your skull may ache and hurt from time to time, especially when it’s cold weather.
- You may have a small metal plate and some screws permanently fixed in your skull, check with your surgeon to see if he or she has used any hardware to keep your skull plug in place.
- Take sun glasses and ear plugs with you when going out as you may have sensory sensitivity for several month after surgery.
- Your surgeon will want to do a follow up MRI, the timeframe varies from doctor to doctor.
- The above list is a guideline and everyone's experience of surgery is different it is important to remember to follow your Doctor's advice.
It's important to note that some people return to work after only a month with a complete resolve of their symptoms, whilst others may take up to a year or more to recover. In a few cases some never return to work again and surgery has bought its own set of challenges.
It has been said may times that recovery is not a straight line and you have to take the good days with the bad. Listen to your body as it knows best!
Jo Warren | August 2018
Surgery Shopping List
- U shaped travel pillow - so that your incision doesn't touch the pillow
- Shower cap - to keep the incision dry
- Wash cloth - it will be easier to shower with a cloth
- Stool softener - you'll need to check with the doctor if you're OK to take this
- Hand cream and lip balm - for a bit of pampering
- Ear plugs
- Sun glasses
- Face wipes
- Cold pack
- Non fluoride toothpaste
- Natural anti bacterial gel - the less chemicals after surgery the better
- Button up pyjamas and tops to avoid pulling anything over your head
- Podcasts downloaded to phone or ipod
- Cranberry juice to help fight any UTI’s from having a catheter
- Prune juice to help with the constipation
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Remember to take to the hospital
- Admission paperwork if not already submitted to the hospital
- Any scans you have been asked to take
- Medical Insurance documents if applicable
- Medical Directive/Living Will
Contacts List and Passwords
- Name: Mobile: Email:
- Account Name: Password: