Being a patient having this condition is hard enough, but at times we may forget about the people around us and how this affects them.

It is not easy to explain to people about what chiari is - how I tell people is by saying; "my brain is too big for my head and is falling down my spine!"  One of my children thinks I have something wrong with me that makes me tired and I have a radio in my head!  The truth is what ever helps you, (the patient) to explain this condition is fine.  If you have young children and want to tell them about the surgery it may help to remain positive and try and tell them about the surgery without using too many long medical terms.  I told my children by saying my brain was too big and the doctor was going to take away some bone to give me more room in my head.  Try and prepare your children that when they come and visit you you may have tubes and needles attached but tell them these are there to help you and assure them they do not hurt.  It may help both you and your children if they do not see you on your day of surgery - it may upset them.

If you have this condition but dont want to explain it to people around you, or if you are a relative of a patient you may not like to ask, here are some points that can be read that may help them.

You may notice a change in the patients behaviour before and after surgery - they may become ratty, depressed, emotional, they may be fine one minute but not the next - all these emotions are normal if you consider what they are going through.  The patient may have suffered for many years before being diagnosed so will have been through a range of emotions.  They may have been living with chronic pain for many years so a diagnosis may even be a sense of relief for them.  Whatever the case please try and remember that it is alot to come to terms with - the best you can do is let them know you are there and can support them.  However, if you notice any of these behaviours continuing or affecting their daily lives it may be worth speaking to the GP with them incase there is anything that can be done.

It may not just be the patient who goes through these emotions if you are a parent you may also go through the same emotions as well as feeling fear and guilt - please try not to think these things.  This condition is not your fault - it is something that quite simply just happened and in most situations is a defect from birth that could not be avoided.  If you are worried about how any of these emotions may be affecting your daily life please contact your GP.

 

Some things you can do to help:

• you can go with the patient to hospital meetings, maybe to take notes or just as company.  Having someone there to take notes will be a big help as quite often the patient may forget what has been said to them in appointments.
• you could ask the patient in advance if there are any questions they want to ask their doctor in appointments, then you could write them down and always ask them if the patient forgets.  Don't worry about asking the doctor.
• be patient!!  they will be going through a huge amount of emotions - bare with them - it is not easy but if they know you are there that will help.

 

What to expect after surgery

I know I have written about the surgery but that is my point of view as a patient.  It may be different for you seeing the patient from the outside.

If you ask the hospital you may be able to go to the anaesthic room with the patient, if you find this difficult it may be best for both of you if you say goodbye at the ward - they will know you are there and that will help them.

After the surgery the patient will go to the recovery room, they might be apart from you for up to six hours.  When they come back to the ward they will be likely to be on oxygen, with other tubes attached to them - please do no worry about these tubes - they are there to help the patient and will not be painful for them.  The patient may be unresponsive initially - but this is normal so do not worry.  They may be sleepy for a few days - this again will be normal - please no not worry, sleep is likely to help them with their recovery.

 If you do have any concerns or feel something is wrong, please speak to a member of staff or the patients consultant.  Don't worry about being too pushy of over sensitive - you will know the patient better than the hospital staff you feel something is wrong by raising your points may simply eleviate any fears you have.  Please remember though that hospital staff should not discuss directly with you any aspects of the patients care or condition unless you are next of kin or have the patients permission.