My CaverVoice FAQ, Hints & Tips

We are really excited at My CaverVoice to have the chance to create and build a community that can look out for, support and share experiences with each other to live their best life.

My CaverVoice see’s your ABILITIES not disabilities, those raspberries do not rule us.

FAQ

How do I tell people I have a raspberry in my brain or spine?

It can be hard for people with cavernomas to explain their condition as it’s a little bit special. Did you know that only 1 in 600 people have Cavernomas and for many of them they only find out by accident. It’s only 1 in around 400,000 that have any symptoms, so that makes you pretty rare. Anyway, because it’s so rare even some doctors have to google them, I know mine did!

You might feel that telling your friends, family or other people really daunting, but it needn’t be. You could start by talking to family and inviting them to look at our website. For some people, it might be helpful to ask someone to talk on your behalf or just be there to support you.

Sometimes it’s easier to tackle people individually, as you can get different reactions from different people. I know I found it easier to talk to people once I properly understood what it was myself.

The website here has lots of handy pictures that can help explain it to friends. We often talk about the ‘raspberry in my head’ and it’s true to say that’s what it looks like. Some of them are a little leaky, others behave themselves a little more, but sometime that can affect how you feel and what you are able to do. This is why it’s important to share how it feels for you, as that may be different to how it feels for someone else.

Some young people have opted to have an assembly to tell their friends at school about Cavernoma and how this makes you feel. More importantly, it also shares how they can help you. Cavernoma Alliance has some great packs available for your teachers and other adults to do this.

For me, I chose to go public in a more technical style. Once I understood my diagnosis, I felt it was easier to share my thoughts and feelings at my own pace and through social media. I have a short blog on Twitter where people can follow me and hear about my journey with cavernoma from diagnosis, through the surgery pathway and beyond.

What to do if I feel scared or worried?

If you ever feel scared or worried there are loads of different things you can do!

You could speak to a doctor who can answer any questions or worries you have about your cavernoma! This might also allow you to understand your cavernoma even better!

Speak to one of CAUKS young champions! We don’t bite and we are support you through your cavernoma journey by providing suggestions as to how you explain to friends and family (as that can be a little bit worrying). We can also just chat and take your mind off of cavernoma. Either way we are here to support you!!

And one of the most important things to do is speak to your parents! It is very important to speak to your parents as they are the ones who look after you and they need to know if there is something wrong. For example if you are worried about going to the doctors it is important to tell your parents this as they can sit down with you and explain what will happen!

What does an MRI feel like?

An MRI is like a giant doughnut. You are laid out on what looks like a table which then moves you in and back out of the ring itself. It can be quite noisy but it doesn’t hurt and it’s nothing to be scared about. It can take a bit of time for people to get themselves organised, so you may be there for 1/2hr or so, but they talk to you all the way through. You can’t wear anything metal and sometimes you have to change into a hospital gown. Some hospitals have videos you can watch whilst the MRI takes place, which is cool! So in summary, it feels like you’re laying on a table being wheeled in an out of a noisy giant doughnut, nothing to worry about.

What might I need for an overnight stay?

Your grown ups will be tasked with making sure you bring any medication and personal equipment you might need (like walking frame for example).  If you’re staying overnight, don’t forget your washbag, especially your toothbrush and toothpaste.  Comfy nightwear is a definite but think about accessibility. Some hospitals give you special gowns to wear, especially if they are carrying out a particular procedure. 

Don’t forget clean undies and perhaps a book or some colouring, something to stop you getting bored. You might like to bring something from home that is a comfort. For me it’s Bunny! I’ve had Bunny since I was 2 and she goes everywhere with me. My top tip is don’t forget some warm socks, you can get chilly feet!

How do I remove the sticky stuff from an EEG?

My top tip for this is soaking the area with conditioner and leaving it there for a good 5 minutes before massaging it. It may take 2 or 3 goes and a ‘tangletease’ type brush helps. It’s tricky, but you’ll get rid of it eventually, honest!

What is a CT Scan?

A CT scan (Computed Tomography) uses x-rays and computers to take pictures of the internal structures of your body.  Like the MRI, the CT scanner is a large doughnut-shaped machine with a hole in the centre through which a special bed can move. The scan can last anywhere from five minutes to 20 minutes, depending on the area and complexity of the scan. Although the bed will move through the scanner, it will not come into contact with you. Sometimes you might need to have injection of ‘contrast’ a liquid that shows up as a different colour on the scan. If you need contrast, in most cases, they will put local anaesthetic cream on your skin to make it numb before the injection.

What is the difference between a CT Scan and am MRI?

A CT scan uses X-rays to create detailed pictures of organs, bones, and other tissues. An MRI also creates detailed pictures of areas inside the body, but it uses radio waves and a powerful magnet to generate the pictures. They both feel very similar, noisy doughnuts.

Can my grown up come to the Hospital with me?

You may be allowed to have an adult with you throughout your stay. However, this depends on where you are and what procedure you are having. When you receive your hospital appointment letter it will tell you what accommodation is available. When I had my 5 night EEGs, mum was allowed to stay with me. However, Mum will not be allowed to stay directly after surgery, but she can be there with me until bedtime. It really depends on your hospital and appointment, but most of the time, there is an opportunity for a grown up to stay with you.

Can I bring my teddy to hospital?

ALWAYS! Teddies are a great comfort. I can’t lie, I also take my blanket with me too. Whatever makes you feel safe and comfortable.

What is hospital food like? How do I get it?

Well I really like hospital food. Honestly, I’ve had quite a few stays in quite a few hospitals in these last couple of years and it’s never been really bad. The good thing is, you get to choose. In some hospitals I have had to complete a form and in Great Ormond St they give you an iPad which have pictures and you choose your day’s menu each morning on that, which is pretty cool! You can choose from all sorts of things, both hot and cold, and they cater for all sorts of dietary requirements. In my experience, there’s so much to choose from that you’ll not go hungry. Most importantly, there’s always a pudding, which is a bonus!

Can I bring my own pyjamas?

Yes, but for some procedures you may have to wear a gown or something supplied by the hospital. Top tip, if you’re having a procedure, there’s this great charity that supplies special hospital pyjamas. I have some, made especially for me with a nautical theme, how cool is that? You can ask your grown up to apply to www.pyjamafairies.org

What will happen about my school work whilst I’m in hospital?

Most hospitals have a school room or facilities to support your learning. Your health comes first, but if you are in hospital for a long period of time, your grown up can arrange with school and hospital school to support your continued learning. They may visit you by your bed or if you are able to go to the school room, it’s a great change of scenery. Don’t worry though, you’re there firstly to support your health, I am sure school will do everything they can to support you on your return.

BIGGEST HOSPITAL TOP TIP

Socks with sticky bits on the bottom are a must. I get cold feet and wear socks in bed at the hospital. However, hospital floors can be very shiny and slippery, so the socks with those anti-slip sticky bits on the bottom are great at keeping you on your feet and off your bottom!