Hello, I’m Megan a 19 year old girl from Portsmouth. In December 2017 my left eye began closing and dropping. I found out after many hospital visits that I have an Ossifying Fiboroma (a benign boney tumour) growing in my left sinus above my eye. When I found out I tried googling to find out how other people coped and went through this but I couldn’t find anything that helped. I am writing this to give everyone updates on what happens and to hopefully help people who have the same problem.
Please scroll to the bottom to read the start of my story - it is easier to post updates at the top
7th May 2018
I went to the doctors today. I have had so much pain all weekend in my head. The headaches are so painful and feel like they did before the op. It’s my first proper headache and is so painful. The doctor that I saw asked me to explain everything so I did. He was shocked and asked how I am in myself to which I replied not good. He done a test which shows I am moderately depressed and have been referred to Talking change - a mental health service. I told the doctor that I don’t like speaking to people on the phone. I would rather message or email. He said I need to do this and if I don’t the next step will be anti depressants which I don’t want to do.
I have completed a form online and had a phone call today to book in my first appointment - 23rd May. Hopefully it’s a start to getting myself back to how I use to be because I hate feeling like this
1st May 2018
I had my first hospital appointment today since my operation. It was an eye appointment at QA hospital.
Me and Mum went in and saw a lady who looked in my eye. I noticed she kept looking in the magnifier thing then sitting back and looking at me. She asked if I had any problems with vision etc. I haven’t been able to wear my glasses because it hurts on my scar.
She said my vision is brilliant and hasn’t deteriorated which is good! She also told me that my eyes still aren’t symmetrical. I noticed this myself and I cry almost every day because they look stupid.
She said it may still be swelling. She wants to see me again in 3 months. If it is still the same I will be referred to the plastic surgeon who will perform an eye lift. Just when I thought things were over.
Ive been so down just feeling like it’s constantly something going on. Hopefully it’s swelling but we will see
25th April 2018
Today was my first day back at work. I woke up feeling sick to my stomach but knew I have to go in. I done 9-1 today so it wasn’t a full day but it felt like I had worked a week straight.
When I got to work, I felt so much better. The people i work with make me feel so welcome and comfortable. I met my new manager who told me I can speak to her whenever I need to and to take it easy.
Some of our regular customers came in and it was so nice to see people actually happy to see me.
By 11 oclock I started getting tired but managed to pull through.
19th April 2018
I haven’t been updating lately as I don’t think there is a lot to say at the moment.
I wasnt going to put this but i think people should get a true reflection on my whole recovery. The past few weeks I haven’t been myself. I’ve been lower than I’ve ever felt in my whole life. For a few weeks I kept everything to myself and thought things would’ve improved. But they didn’t.
I let things build up so much until they exploded. I needed to speak to my family and tell them how I’m not myself at the moment and just want to be alone and cry. I told my family and they told me it won’t just go away and it’s okay to feel like this. They all told me to make a doctors appointment which I did.
Honestly it wasn’t much help. I’ve decided to see how things are when I’m back at work and go back to the doctors if I still feel the same.
I have got my return urn to work form to start part time again on the 25th April.
Some days I wake up and just cry at the thought of leave the house. Other days im excited.
I received another letter from the hospital today and I instantly panicked. Why did I need 2 appointments at hospital? Was something wrong?
My Dad assured me if something was wrong I would be in earlier than the date given. So now I just have to wai
Thursday 5th April
Today I went back to the doctors, my pain seems to be getting worse and I seem to feel so low every day.
The doctor has signed me off work for another 3 weeks so I will be going back on the 25th April but I have been told to go back part time.
The doctor told me to try and cut down on codeine as sometimes that can make headaches worse.
I have got my appointment to see my surgeon again in June which seems like forever away. But I’m hoping to get more answers.
Hopefully I can drive sooner than expected. It’s driving me mad sitting in not being able to do anything.
Things seem to be catching up with me lately. I feel very drained from doing little things and my sleeping and pain has gotten worse over the past few days. Last night i slept from 3-7am but then napped from 9-12am. I havent been sleeping during the day either.
My mum is back at work now so I wake up and feel like there isnt a reason to get out of bed. It is so frustrating knowing I cant just jump in my car and go where I want and that i litterally wake up to sit in front of the tv or do colouring all day.
I called the doctor today as I have been having bad anxiety, not sleeping and horrible pains. He prescribed me with some sleeping tablets and some more codeine.
I still haven't had my appointment for my MRI scan from the hospital but I am going to ring them tomorrow.
22nd March 2018
I've been having some more bad days recently. My eye is still closing now and then and my head is full of a lot of pressure. It’s hard to describe the pain but the best way I can is it’s like doing a hand stand and the blood rushes to your head. Sometimes I have to sit down as it feels like my head is pulsing.
Its been a month since the op now. I googled recovery for people who had the same surgery and it says it’s between four and eight weeks so hopefully things will start improving soon even though it’s still early days. I am sleeping better which is good and have stopped napping throughout the day. If my head still feels like this tomorrow will be going back to the doctors.
17th March 2018
Sorry I haven’t updated in a few days. I am in so much pain and seem to of had so much bad luck the past few days and I’m so emotional which makes things worse! I spilt water on the floor the other day and cried. I smashed a salt shaker at 1 oclock Thursday morning and cried and I smashed a glass on Thursday and cried about that too. I’m really struggling to sleep but I don’t know why. The pain is still there when I sleep but being dosed up it is bareable.
I have been drinking the Horlicks drinks, having a long bath before bed but still don’t sleep until about 3 and I’m awake no later than 9.
Today im spending the day with my dad and hopefully I will feel a bit better.
12th March 2018
Today I went back to the doctors. I woke up in agony with lots of problems. My head is still so painful and I’m still not sleeping. My throat feels like I’ve swallowed razor blades and feels so swollen.
Ive been so emotional today. I thought I was doing well but after today I think different.
My doctor checked my tonsils and said they are a bit red but nothing alarming. He said that my head is going to hurt after what I’ve had done. He gave me some ibroprophen and said if the pain gets worse or the tablets aren’t helping that they will move my appointment with my surgeon forward.
I have had a nap today but still arent feeling good.
I have also added a contact me button at the bottom of the page where I can reply to emails
9th March 2018
I haven’t been having a good past few days. Today and yesterday I have been in so much pain.
But today i was finally aloud to wash my hair!! First time in nearly 3 weeks!! I can’t wash it properly though, baby shampoo only and no drying it.
I felt so fresh after but still feeling rubbish. It’s 8pm now so my hairwash was about 8 hours ago. Be had a lazy day all day to try and feel better, but now my scar is so sore and painful. I think it’s because it’s soggy but not too sure.
Im hoping to feel a bit better tomorrow and hopefully get a bit more sleep as I’m still not sleeping too well.
8th March 2018
I didn’t end up falling asleep until about 1am. I don’t know why but my sleeping pattern is so messed up. I fall asleep about 12-1 everynight and wake up at 7 every morning.
My mum rung the doctors today to get some stronger painkillers so I have picked them up. I went to asda but the pain has been so unbearable today that I didn’t think I would be able to walk around so got a wheelchair just to be safe.
I can finally wash my hair tomorrow and I can’t wait. My head has been so itchy and hurting so bad. My eye has swollen up again today too
7th March 2018
Sorry for not posting yesterday, I woke up and saw my story had gone world wide and was very down so people from FOX newspaper in America had said some really nasty things. The story has been changed so much from the original and people were calling me an alcoholic and fat.
Well anyway, today is my dads birthday. I am going shopping with him and going for a meal later tonight.
I have just got back from shopping and I am soooo tired. I have been out about 3 hours and my heads been hurting a lot too. I’ve been wearing headbands so people can’t see where my head as been shaved but it’s been so itchy that I have had to take it off.
I was going to have a nap before the meal but i didn’t. I wasn’t feeling brilliant about it was but when i went for the meal i really didn’t feel well. My tablets seem like they are not doing anything anymore. I’m going to have an early night and see how I feel in the morning.
5th March 2018
Wow. Today has been very overwhelming. I have woken up to see much face around local and national papers and online. I will post the links below.
Today I managed to get dressed and go to asda with my Mum. I pushed the trolley as I wasn’t feeling great and didn’t want to fall over from being light headed.
My pain is still very much there but eases a little bit when I take my tablets. It still hurts when I move my head too fast or up.
I have lots of visitors tomorrow so hoping for a good night nights sleep.
4th March 2018
I have been in so much pain today. My head hurts whenever I move it, to look up or down, bending down. My dad called Southampton hospital and they rung me back to ask about pain. It feels like where my pins are are being pushed and shooting pains in my head.
They told me to see how I am tomorrow and if I’m not feeling better to call them again.
I have had a lazy day today as it has been a painful day of recovery. Hopefully I feel better tomorrow.
3rd March 2018
I had a lovely day today with lots of visitors. I got an order of lots of colouring books to keep me busy too!
At around half 9, I sneezed and must of tensed up. The only way I can describe the pain was it felt like my skull jumped out of place almost. I had bad shooting pains in my head and it really hurt.
I told my mum to ring 101 so she did and they advise I go to a&e straight away. They were going to send an ambulance but I said I would rather go down in mums car.
Me, Mum, Dad and Luke went to the hospital where we were taken to the major units. Only me and Mum could sit in the waiting room due to limited space.
They took my blood and told me to carry on waiting.
It got to around 1 oclock and my pain had gone down a lot. I was very very tired and obviously after having head surgery I wanted to sleep.
I asked the nurse how long the waiting time is and she said I had been here for half of it.
I shouldnt have, but I decided to leave as my pain had calmed down and I wanted my tablets and my bed.
Removing the staples
Me and Dad have just got back from having my staples taken out. I hate to say it and sorry to anyone who has staples in their head, but it was honestly the worst pain I have felt.
The part it hurt most was when the remover was under the staple. It was pulling my hair out too and was just awful. The nurse was really lovely and gave me water and tissues. She called one of the other nurses in to hold my other hand but it didn’t really help.
I cant wash my hair for another week to allow the staple holes to close. I can only use baby shampoo when I wash it and can’t use a hairdryer. She said I can lightly brush my hair whenever but I am going to wait until I feel up to it.
I am glad the staples are out but im going to spend the day sleeping as I’m in so much pain.
2nd March 2018
I am feeling a bit better today.
I have just had a phone phone call from my doctors who said because of all the snow they have had loads of cancellations so my local doctors can take my staples out at lunch time today!
Im not too sure how I feel about it. I’m so glad they are coming out and I can wash my hair but I think it is gonna hurt so much. I must have atleast 50 staples in.
1st March 2018
I can’t believe it is March already?!
I didnt sleep well last night. I was up until about one o’clock reading about how to start charities. I would love to start a charity and raise more awareness for not just benign tumours but cancerous ones too. If anyone has any tips then please drop me a message cos I’m not really sure where to start!!
I woke up screaming last night. I think I hit my head or caught my staple on something. I was still asleep but I remember being in agony and crying.
I got my mum to check my scar to to see if it was bleeding but it wasn’t. I am in a lot of pain today.
I have just had a visit from Ellie from the News who is going to be writing an article to spread more awareness.
I will probably spend the day colouring and sleeping as I am really not feeling well today.
28th February 2018
Again, I woke up very emotional today. It is driving me insane sitting indoors all day everyday.
I asked Mum and Dad if we could go for a drive today and get more arts and craft things - Dad brought me lots of painting and colouring sets.
We went in to work to see the team team and it made me miss it so much!! Everyone says enjoy the break but when you love your job as much as I do it’s so hard to enjoy sitting on the sofa doing nothing.
I saw one of our customers too who asked how I was and it’s just the little things that really make you appriciate everything.
We parked round the corner from the branch but I because out of breath and light headed walking in. I don’t know if it was because I was overwhelmed but it was a horrible feeling. We didn’t stay for long I just wanted to see everyone.
We drove to hobbycraft and looked around there and we’re going to get a costa but I was just too out of breath and tired. Instead we got a Burger King and went home.
I had a photographer from the news round today who took a brilliant photo of my scar and I cannot wait to see it properly.
26th February 2018
I woke up this morning very emotional. I am already bored and fed up of staying in doors and it is so cold outside that I can’t even go in the garden!
My Mum spoke to a doctor today to book in my appointment for taking my staples out. My local surgery can’t fit me in so I will need to go to Somerstown on Monday. I’m so deverstated I just want them out. I cringe so easily and they are so uncomfortable.
The doctor asked my mum how im getting on and she told him that I still can’t feel my head. He said this is normal because so many of the nerves in my head have been cut I may not ever get the feeling back.
A lot of people have been messaging asking how I am feeling but I can’t even explain it. It is a headache but it isn’t if that makes sense? It is so much worse than any ordinary headache or migraine. My scar is itching which is a good sign but it’s like a burning pain too.
Because my hair is so clumped with blood, I did have a bit of a meltdown when going to bed last night. It’s so uncomfortable and itchy. I cried for a while and told my parents I want to shave it off to save the pain of brushing it all out. They wouldn’t let me because I will regret it in the future. Mum has been bathing me and told me she will try and wash some of it out. We tried but because I can’t brush it, it doesn’t really do a lot.
I didn’t sleep well last night. I dunno why I was just laying there for ages and just couldn’t fall asleep.
I woke up early this morning too. So I have had such a bad headache all day. I’ve tried napping but I just can’t switch off. It’s so strange because I want to sleep.
I got some more lovely presents today including an orchid plant, 3 share size galaxy bars and a lovely jumper!
Im seeing luke today so hopefully I feel better tomorrow.
There isnt really a lot to update while im at home. I am spending the days on the sofa watching tv and sleeping so I apologise if there isn’t a lot to say.
24th February 2018
I had such a good nights sleep last night. I stayed in bed until 9 oclock and my mum helped me have a bath.
We tried washing my hair but its its too risky for getting water in the cut and my hair is just covered in blood.
I have to go to the doctors Friday to get my staples taken out.
Its weird, I feel so much better today as in I have eaten but I feel almost headless from my eyes upwards.
I have been catching up on hollyoaks all day and making up for not eating for 4 days!
I am so so overwhelmed with all the support I have had from everyone and writing this blog still makes me feel so better knowing I am hopefully helping someone else.
Going home - Friday 23rd February
It was around 5.30pm when all my meds and sick note became available.
I was still being sick but like I said - that wasnt stopping me.
I brought chocolate and a card for all of the nurses on the E nuero ward as I could never fault them - they were amazing!!
Mum hunted a wheelchair to get me downstairs, even though I could walk, it will still take time and I still get out of breath and light headed very easily.
My Dad and Jay went and got the car whilst me and mum waited in reception.
I was still using the flannel on my head but I threw up so much bile when waiting. I was in agony, so hot and nothing was helping.
When i I got home, I had a little nap. My mum was ordering a chinese as she hadn’t eaten all day and she gave me a little bit of rice. I was so hungry but nothing was settling.
I ate the rice and thank god it stayed down and I went up to bed at nine oclock
23rd February 2018
I didn’t sleep very well last night. Being on a neurology ward means everyone has different problems with their head. Some dementia, some loss of speech, some operations.
I was the only person on my ward who had a Bifrontal craniotomy and I was also the youngest on my ward.
Being woken up every few hours isn’t ideal, but a lady was screaming for her husband last night for a good few hours which obviously kept me awake.
I wasn’t the only person who was awake when she was shouting.
The doctor came and saw me this morning to look at my swelling and talk about moving forward.
I am still in a lot of pain - my eye feels strained as it’s closed up. Fluid has run down my whole face so it is all so swollen.
The doctor asked when I would feel comfortable leaving which I said today! He said okay but I will need to start walking more with the physio therapist and then get my medication and I can go. I couldn’t wait!!!
I had some toast for breakfast but my belly just wasn’t feeling right. I asked my mum to bring me a McDonalds happy meal to see if I was just hungry. By the time she had I arrived I was really sweating but luckily I had my flannel on my head and the nurses gave me a fan the night before. I ate one chicken nugget and still didn’t feel good.
I was sick after one chicken nugget. Between 1.30 and 3.00pm the ward asks visitors to leave so patients can have a sleep to help with the healing or recovery. When my mum left I tried to sleep but again came over with the sweats and was sick again. Because I hadn’t eaten a lot, it was mainly bile and obviously having my head stitched up, it was agony every time.
22nd February 2018
As you can see, this was the worst day. I honestly felt so useless and fed up and I would never ever wish blindness on anyone.
Me and Mum went to subway downstairs today. She pushed me in a wheelchair although it only went backwards haha
It didn’t last long as I was sooooo paranoid that everyone was staring at me. We went back up to the ward as I was very upset. I know its human nature to look but when you are feeling As bad as i am you cant help but think that everyone is whispering about you.
This was my worst recovering day but the doctor came round and said the swelling is normal and a cold flannel should help reduce my swelling.
22nd February 2018
Sorry I didnt update you yesterday and I'm writing this on the 23rd. Yesterday was one of the worst days of my life. I woke up to both of my eyes completely closed. I was very panicky and scared so I have had lots of attention from the nurses today.
At around half seven, one of the nurses came and sat with me just to talk and make me feel more comfortable as I was so scared. She took my bandage off for me and I am amazed at the results. The scar isnt as big as I had expected and it looks so so neat!!
The physio therapist came round at about 9 oclock and asked how I was feeling. She asked if I wanted to go on a short walk and that the soon I done it the sooner I could go home. We only walked from my bed to the ward doors and back but I felt confident doing it so I started walking to the toilet rather than using the commode (with assistance).
I saw mum, Dad, my auntie Lynn and uncle Paul.
My head is really hurting.
I haven’t eaten anything today apart from a toastie which I threw up almost instantly. I just want to go home now I’ve had enough.
21st February 2018
Its now half seven. Both of my eyes have closed up now and I am really struggling to see.
My surgeon came round and said my eyes are as expected and will probably get worse tomorrow.
He said that he is happy with the progress but I need to start eating. My bandage wont come off today but can tomorrow - it is so tight I cant wait to get it off!
He said that he is off for the next 2 days but another doctor will be round to check on me and I will be seeing my surgeon in 3 months time for a check up.
He sent me for a ct scan to check that it had all gone. Luke came with me and they took me down on my bed so I didnt have to get out. At this point, I couldnt get out of bed so they had to roll me on to the bed for the scan.
The surgeon came back up to say that the tumour has completely gone!! I will need to have check ups for a few years to see if there is any chance of it growing back on either my other sinus or anywhere else.
Today I have been so fed up, I have seen mum, dad, Luke, Hannah, Liam and Auntie Kim. I just want to go home, I havent felt myself in so long and just want to feel normal again!
21st February 2018
I didn't sleep well atall last night. As I had came out of theatre yesterday, I had checks every half an hour until 2.30am. Then it went down to every hour.
I didnt eat my sandwich in the end. My belly is just turning constantly. As soon as my checks at about 6.30 came around, I was awake for the day then (apart from my mid day nap). I just wait for breakfast and then wait for everyone to come up. Its constantly waiting which is testing for me being so impatient.
The doctor came round today and said that everything went as planned. There were no problems during the op or with the maxi facial specialist and that the only thing now is to recover.
The doctor said that my bandage may be able to come off later today but if not then tomorrow. It is so tight around my head all the time.
I came out of theatre at around 3.30pm and went into recovery. I don’t actually remember anything about recovery. I woke up and saw my mum and her and my dad swapped every half hour to see me as it was only me and a nurse and one other person allowed in the room.
I remember being in a lot of pain when I’m recovery and thought they had shaved my whole head as it was wrapped in the bandage - they didn’t though.
When i went to the ward, they were just doing dinner so asked if I wanted anything. I just wanted a sandwich as I wasn’t hungry anyway.
I didn’t eat any of it but dad brought me a double chocolate chip cookie which I obviously ate all of.
When in theatre, I did have a catheter in but they took it out as soon as I was in recovery. Can I just say they are the strangest things ever! It felt like I needed the toilet but wasnt sure if I was actually going? Anyway, when i went back to the ward they asked if I want wanted a bed pan or to use the commode. I chose the commode and after only about 4 times of needing help to go, I started getting myself out of bed. The nurses said this is amazing after just a few hours out of theatre.
I was sad when my mum and Dad left. I hate being left out of my comfort zone by myself but I was so tired and they were back up by 10 the next day.
At around eight o’clock, a doctor came in and done a blood test on me and asked me general questions. He told me that there is more than one theatre as there was around 7 people waiting and I was getting very worried of why they all had beds but not me.
At about quarter past 8, a lady who worked on the day unit, came and said there has been a change around and that my operation would be first and I need to get ready now. I went to find my bed and put my gown and socks on, take my jewellery out and prepare myself.
The surgeon came to see me and just explained what’s going to happen, how my Mum and Dad can know when I’m out of theatre and if I had any questions. One question I was worried about - what if I needed to sneeze after? He said there isn’t really an answer to that. Yeah it will hurt but the operation isn’t on my nose.
The lady from the day unit sat down with me and said how I was one of the calmest on the ward and the youngest! However I did get upset the closer it was getting - I had never been so scared in my whole life. She told my mum and Dad she will walk down to theatre with me and she will ring them when I’m in recovery.
We all walked to the theatre doors and it was time to say goodbye to my mum and Dad for a few hours. I cried but knew I had to get this done, I hate seeing people worry so I was more worried about what they were going to do for the next 6 hours!!
On arrival in theatre, there was 4 anaesthetists who were all so lovely. I laid on the bed and they began general conversation to calm me down. Where did I work? Did I get good holidays from work? To be honest I don’t really remember an awful lot of how I fell asleep.
20th February 2018 - operation day
I am currently sat in the waiting room at the hospital with my mum and Dad. It’s half seven but we have been here since quarter to.
I will either get my mum Mum or sister to update this for me or I will do it when I can see again.
19th February 2018
It’s operation day tomorrow. Last day at work and last drive in my car. My lovely work colleagues brought me the most thoughtful gift. 2 hampers, one full of my favourite chocolates and sweets (kinder and haribo) and one filled with smellys, colouring book, hair stuff, Easter eggs. It made me cry again!!
this evening I have just packed my bag with my Mum. It still hasn’t hit me. I don’t think it will until the morning
my boyfriend is staying tonight so we’re gonna eat as much food as we can cod I can’t eat after 2am
15th February 2018
So I had my pre op yesterday. I think it’s all starting to become real and scary now.
I saw a nurse who weighed me, asked questions etc. He explained the op to me again. They will be taking out part of my skull and then nailing it back in to place after. I will be at hospital for 7am Tuesday but I am the 2nd out of 3 operations that day so will probably go down about 12 oclock
he explained that when my head is shaved, it will be shaved in like a loveheart shape. This is so the staples don’t pop out.
The nurse said that i will be in a lot lot of pain after the op which I was expecting anyway. I will be given 2 straight shot a of morphine to help with the pain and my bandage will be really really tight.
He told me if I become cold on the operating table, I may be put in intensive care so they can keep an eye on me.
I have nearly sorted all my stuff stuff but I am getting more worried each day.
My boyfriend treated me to a night away for valentines yesterday and I had such a good time but this was still playing on my mind and I just wanted to cry all the time.
I am at work tomorrow, Saturday and Monday and then will I off until atleast the 20th april.
14th February 2018
Today I have my pre-op at Southampton. I’m not even sure how I feel. I am so glad that it’s less than a week away but I’m scared. I suppose it’s better to have it early then I can’t think too much about it but it’s really starting to get to me about my hair.
I will keep you updated on how my pre op goes.
13th February 2018
I called Southampton yesterday as this week I have had constant migranes and wanted to see if there was any more news.
The receptionist took my number and said someone would call me in the morning.
Today I received my operation date..
Tuesday 20th February - NEXT WEEK!
11th February 2018
Today I am still waiting for my operation date. I have another appointment at QA next Monday to check my eye sight again and I am hoping to be in by March.
I will keep everyone updated on eye tests, letters and dates that I get and I will be uploading photos of my recovery.
Please, if you are going through the same thing, message me as I know how hard it can be feeling scared.
2nd ct scan
I can’t remember the exact date, but I went back to Southampton for a CT scan.
I had also been to QA again for an eye check up.
My vision is still the same - brilliant news. But I still require tests before and after my op to make sure it doesn’t change.
After my Ct scan, I asked if I needed to see the surgeon. They advised me that I will need to wait 2 weeks for both the surgeon and maxi facial specialists to sit and look at it together and agree a date.
22nd January 2018
As much as I didn’t want to, it was time to take my hair extensions out.
I wont be able to brush or wash my hair for a few weeks and it will be easier with out them.
I know theyre only hair hair extensions and of course my health is more important, but this was a big thing for me. I also booked my hair to be cut for the 2nd of February.
The doctor told me its up to 3 months to wait. I am listed as an urgent case but of course, he deals with people that have brain tumors and of course they are before me for cancellations but hopefully I will get one soon.
Coming to terms with the doctors choice
After finding out the op was bigger than I thought, it took a while for me to come to terms with it all.
The week i spend in hospital will be the following-
day 1) spend around 7 hours under general anaesthetic having the operation done
day 2-4) my eyes will be completely closed. After the op, it will cause them to go black and puffy and I will not be able to see. On day four my eyes should begin opening again
day 5-7) the next two days will be spent with a physiotherapist to get my balance when walking again. Once I have shown my balance is normal, I can go home.
Me, Mum and Dad spent the next few hours after visiting the surgeon in the cafe crying. This is a big op and of course it comes with a lot of risks. The surgeon said he wants me to have another ct scan before I come in so they can get better views.
My job is a travel agent. I absolutely love it. Having 2 months off is the last thing I want. My colleagues have been amazing, swapping days so I can visit hospital appointments and they brought me a lovely bunch of flowers. My company doesn’t offer sick pay apart from SSP whichever of course, caused more worry.
I brought myself a lovely car in may of 2017 and my tax, mot, insurance is all coming up. I won’t be driving my car for six months but now I am worrying about paying my bills and my car ficnances on just £88 a week!
January 19th 2018
Today is the day I get to meet my surgeon for the first time. Again, both my parents were there with me and we were seen exactly appointment time.
The surgeon called me in and showed me my scans again. He asked questions like could I smell properly, have a got a cold? All to which I answered no and he was shocked. He done so eye tests to see if my eye was becoming lazy but it wasn’t.
The surgeon explained my surgery - it was nothing like I was told before.
I am going to be having a Bifrontal Craniotomy.
The doctor said that my eye socket has now collapsed which can be seen in my scan photo before.
To do the best job, there is two options.
1) cut my forehead open and have a scarred forehead for the rest of my life.
2) perform the operation by almost pulling my face down.
He told me he wants to do it via my head and not my forehead. As a 19 year old girl, he wants what’s best for me and I completely understand that.
‘I will shave your head from ear to ear, around a cm width, I will then cut it ear to ear and pull the skin down so i have full access to the mass and can completely take out your sinus - to prevent it coming back’
Anyone who knows me knows that I love having long hair and have hair extensions in at the moment.
I broke down in tears and He told me that everyone he tells this too cries so it is completely fine to be scared.
The good news - my surgeon wants to do the op with a maxi facial specialist to ensure everything is okay after the op and my hair will eventually grow back over my scar.
The bad news - I will need atleast a week in hospital after the op. I will need atleast 2 months off work. I will have to give my driving licence back to the DVLA for atleast 6 months.
So many things I love about my life was being taken away from me.
8th January 2018
Today I had an appointment to meet the consultant from QA hospital.
Both my parents came with me - they have both been amazing throughout this whole thing and I couldn’t thank them enough.
The consultant looked at my scan from another angle. He asked I had any questions and at this point I had so many.
Will I need surgery? Will I have a scar on my face? Will it grow back? What caused this? How will the surgery be done? How long will I have to wait? Will I need time off work? So much wasn’t going through my head.
To sum it up. I would need surgery. He told me that it will probably be done through my nose and I may need a little cut in my head to drain whatever this is out. I would need 2 weeks off work to recover and it is just ‘one of those things’. Because it isn’t serious, they could leave it where it is. It is something that has grown in my head. However, because it was effecting my vision they needed to get it out.
He told me that as the mass is bigger than usual ones, I will be referred to Southampton Nuerological Hospital as they deal with this more regularly. He then advised he will send a letter to the surgeon and I will meet with him in a few weeks.
New Year 2018
This New Year was not as expected. I would normally spend it at a house party or with my boyfriend. This year I just didn’t feel comfortable doing anything.
I decided to spend the night with my mum and some close family friends. I wanted to wear eyelashes - after all it wasn’t them that was affecting my eye.
Although it wasn’t the worst news, it still wasn’t great and my confidence was at an all time low. I went in to the new year crying with my mum. 2018 is going to be the year that my life will change. But I didn’t know how much.
The doctor at ENT said I needed a camera up my nose to see if there is anything else they can see. I wasn’t comfortable with this but I had had so many tests and I just wanted to go home so anything to make it easier!
She said there is nothing she can see with the camera so we looked at my scan photo.
The first good good news I had heard all day is that because the scan is showing a white mass - it isn’t cancer or anything deadly.
This is the best news I could have heard - after spending by this time nearly 11 hours at the hospital, I had all sorts running though my head.
What the doctor said was that I have a mass growing in my sinus above my head. Like I said, it isn’t deadly but they still aren’t sure exactly what it is. She suggested it being mucus or bone.
My question - what is this to do with my eye? It is pushing on my eye socket which is why my eye lid is closing up.
She sent me home and told me that they would be in contact of what to do next.
28th December 2017
Today, me and my mum decided to go to St Marys to see if I had an infection or allergic reaction in my eye. We arrived around 8am and were called within 10 minutes. We thought that this would be my appointment, however the hospital advised me as it was a walk in centre, they may have to refer me somewhere else if they cannot see an infection. They only deal with things that have happened within a week that they can cure or fix as soon as possible. Because my eye had slowly been dropping since the start of December, they said it’s not straight forward. My boyfriend noticed at my works Christmas party that my eyes weren’t even but I thought because I had had a drink that this was due to that - it wasn’t.
St Marys checked my vision for eye an infection but couldn’t find anything. They referred me to Queen Alexandra Eye department where I was told they have an appointment for me.
There, they checked my vision and eye movement but weirdly, it was all fine. I did have blurred vision but this was due to my eyelid being half shut.
The doctor had said he hasn’t seen this before and wanted his boss to look at it. Again, we waited, until the senior doctor looked and again was confused as to what had happened. The doctor done a blood test to which I passed out. (Normally I am fine with these!)
They instantly sent me to the MRI and CT scanners to see if they could pick anything up.
By the time I had both the CT and MRI scans, it was 5pm. Nearly 8 hours at hospitals. My dad had met us at 11am so we were all getting tired and restless and just wanted answers.
The eye department at QA was closed by the time we were finished but the amazing doctor stayed after to discuss what they had found - they were not letting me leave until they had found out what was wrong.
He explained they had found something on my skull and referred me to ENT (ears, nose and throat).
The doctor also took photos of my eye and said he wants to see me regularly to check my vision isn’t deteriorating.
On arriving at ENT, we waited a further 2 hours. I was very teary, had a cannula in my hand (they cringe me out) and just wanted to go home.
A nurse took me in to a room where we looked at my scan. What I saw was not what I expected...
27th December 2017
On the Wednesday, things started getting worse. I was getting headaches even though I was wearing my glasses and my eyes were not improving atall. I decided to ring my local opticians to explain the situation and see if they had any earlier appointments (I had already made one for the 4th January). They told me that they couldn’t fit me in but if it gets worse to call back straight away. I called back around 4 oclock where they said I need to be seen but they couldn’t fit me in so advised me to go to my local walk in centre at St Marys Hospital. I called the hospital and it was over 5 hours wait so me and my mum decided to wake up early the next day and go down when it opened.
26th December 2017
Boxing Day is always spent with my dad. Me, my dad and my sister had breakfast and done our presents. As you can tell from my last photo, I love wearing fake eyelashes which my dad suggested maybe I am allergic to the eyelash glue. I never thought of this so decided after this day I was going to have a break from them and see what happens. I have attached a photo of what my eye looked like on Boxin gDay.
25th December 2017.
On Christmas Day 2017, I first started noticing serious signs that it wasn’t just tiredness that had caused my eye to drop. I spent the day with my family and in the evening had a games night round my mums friends. There was about 8 of us there and every person had asked what was wrong with my eye. This is when I think I first started realising it wasn’t just me that was noticing the change in it. I have attached a photo below of what my eye looked like on this day.
On the 6th December 2017, I had my work Christmas Party. Nothing beats a Hays Travel Christmas Party!
I was off work this day so got ready at home and met my team at the shop and we all got a taxi together.
I facetimed my boyfriend while in the taxi and he said that he thought something was wrong with my eye. I had been drinking so I automatically thought this is what it was.
I didnt think much of it after this but looking back on photos now. I can see that it definately was noticable.