I am a woman on a mission to share my experiences and to help others who may be going through issues relating to facial pain, facial deformity, TMJ disorder and jaw/orthognathic surgery.
This blog takes you through my journey of facial pain, wrong diagnoses by doctors and orthognathic surgery. Along with this, I provide helpful check sheets, useful tips and leaflets. Feel free to message me or add me on twitter. Always happy to help if I can :) @jawandface
Thursday, 25 August 2016
Happy 5 Years Face!
So it's 5 whole years since my surgery. Yay! This
year particularly has been a largely reflective time for me. Lots of changes
and endings. Lots of repeating patterns and destructive thought processes. It's
been a long old journey. Sometimes I wonder whether it's time to pack this all
in. To finally close the book on my orthognathic journey. Although the surgery
was a huge success in so many ways, there are still a great many things I
struggle with. My journey certainly didn't end after orthognathic surgery.
One of the main findings to come out of this year
is the whole sinus infection issue. After suffering terribly with constant
reoccurring sinus infections after my first surgery, I had both my upper and
lower plates removed. This was in hope that it would ease the pain and muscle
spasms on my bottom jaw and ease the sinus congestion and constant infections
related to my upper jaw. Unfortunately, although the surgery helped with my
breathing and nasal drainage it did not resolve the sinus infections 100%. They
were definitely less frequent after surgery, but I still experience nasal
congestion daily and sinus infections once - twice every 3 months.
I went to see an ear, nose and throat doctor
before having my plates removed and he suggested another surgical procedure.
But as you all know I am not willing to go through any more surgery, so I
refused. In January this year a 6 year leak was discovered at my mother’s
house. A lazy plumber had not installed the pipework correctly and the waste
water pipe from the boiler was unconnected to the waste pipe. As a result, over
the 6 years water and waste dish water had been seeping into the floor and
under the foundations of the house. The leak was fixed, but the moisture, mould
and damaged floor was not. The housing association finally got around to
sending a surveyor, who proposed a list of works; repointing, walls stripped
and replastered, floor brought up and dried out and mould treated. They then
discovered asbestos tiles throughout the downstairs living area and promptly
stopped all work. It was then when they all disappeared. We couldn’t get hold
of anyone. The housing officer, the surveyor, the workmen, the maintenance
department, no one.
The air is thick with mould. My eyes constantly
itch and burn and my nose feels like I’ve just jumped into a swimming pool. My
brother has had flu like symptoms for months and my mother’s asthma is
terrible. The house we had worked so hard to make nice was now ruined. The
mould started making its way upstairs to my brother’s room, the airing cupboard
and the bathroom. We moved all of his clothes into my room. We continued to
call, write and email the housing association, but nothing. I took it upon
myself to message the MP who was fabulous again and wrote to the housing
directors immediately. Another 2 weeks went by and nothing. I email the
directors myself, the tweet the CEO@Steve_Howlett, write to the MP again and the
Ombudsman. More people have arrived to survey the house and disappeared again.
I really don’t know what to do. The mould report says it all.
So anyway, after that long story, we now believe that after years of suffering, pain, high temperatures, shivering and having to take constant antibiotics that this leak may be the cause of my sinus issues. Something that could have been completely avoided if someone had done their job properly. Look what negligence can do. To make matters worse Peabody are in no hurry to rectify the problem and in fact lied and told the MP, the ombudsman and environmental health that the problem has been fixed. Oh to be a millionaire and leave the UK!
This year, like all the others since my operation has been a step forward. I now have a steady stream of money and clients and I am becoming more confident in myself and my abilities. I have had the opportunity to work for myself and explore different areas of work I had never thought of. For example, I have fallen in love with online marketing. If it wasn’t for the operation I would be working in H&S or HR for some corporation somewhere.
On the flip side I have also had to wrestle hard with myself. I get negativity thrown at me all the time and I take it very personally. I hate myself and constantly pick holes in anything I have done. Be it a lost word during a telephone conversation, a spelling mistake on an email or forgetting to do something. I know no one is perfect, but with my medication and pain, I really have to concentrate extra hard on everything I do. So when it doesn’t go 100% right, I beat myself up for it. Why put in all this effort to mess it up anyway?
I’ve also had to come to terms with the fact that I am 28 and miles behind others my age and so far away from where I thought I’d be. I take comfort in that fact that this time two years ago, I didn’t think I would ever be able to work again. Constant pain and fatigue made it impossible for me to even go to the shops or see my friends. I still have pain every day and I get awful face and head migraines but these are less frequent now. 2-3 times a week, on a good week. I can sit at an office chair for 7 hours now and not have to go home to sedate myself with powerful pain relief. I still take the pain relief but a lot less. 2-4 co-codomol 30/500mg, ibuprofen 400mg x 3 and 20mg amitriptyline daily. I have sumitriptan nasal sprays and diazepam for really bad days. It would be nice to think that by this time next year I will be able to write and tell you that the medication has all gone and I am pain free at last. Let’s keep our fingers crossed for that one!
My assessment for King’s College body dysmorphia clinic has finally arrived. I have that booked for the 5th September. My mum can’t come with me, so my brother has agreed to. I shall let you all know how I get on. Hopefully, this will be the missing piece in the psychological part of my recovery. I have waited for this appointment for almost 2 years now. In that time, I have only seen my psychiatrist and psychologist at King’s 6x. I know I need to work on this side of me. I know this inner bully needs to be quietened down and I need to be less scared of the world. I need to learn to love myself and to believe the good comments and ignore the bad. I am always waiting for someone to validate my self-hatred. When they do, that is it, nothing else matters. All the negative feelings of hate and fear come rushing back. Stef you are a freak, you are ugly, you have put on weight, you are unlovable, everyone you love leaves, you won’t ever have what you want. Look at that chin, that fat, you are stupid, you are pathetic and weak, you have to rely on other people, just give it up, it will make the world a better place. I suppose some of these are normal, in moderation, but this is all consuming for me. These are my 10 commandments. These are the demons I face every time I leave the front door, answer the phone, speak to someone. It is always there looking over my shoulder waiting for someone or something to back it up. And for the most part people have no problem making that happen for me.
Have that for a deviated chin! Sure many will hate seeing this picture!
Be it a spiteful comment at work, your partner lying to you, your friend letting you down or just some silly troll online. There is enough hate in the world and I refuse to join these people or to stop helping people who need it.
Well this went a bit dark. So finally, for now, I shall finish by writing a little bit about plate removal surgery. I have had a lot of people message me recently about removing their plates. It is completely common practice in places like Switzerland to have your plates removed after a year. The only reason it is not common practice in the UK is because it costs money. Personally, I am all for removing the plates after a year. It is much more natural and stops future issues with bone growth over the plate sites. Furthermore, you may find that like me, your jaw movement and breathing gets a lot better once the plates are removed. Many people have a horrible time with orthognathic surgery and this puts them off suggesting plate removal surgery. However, plate removal surgery is a lot easier and a lot less painful. Even people who have had their plates removed 12 years after surgery can tell you this.
Plate removal surgery is day surgery and all work will be done inside your mouth. You will be sore after surgery and maybe a little numb from the stretching, but nothing like the original surgery. My surgeon said I could go back to a normal diet after a couple of days but I stayed on soft food for 1 month after the plate removal to allow the bones to properly heal and for me to build my facial muscle strength. A lot of people do not have the same pain and or problems with muscles tearing as I do, so this step would be totally irrelevant for you. You can go back to work and resume normal activity as soon as you can.
Pain of orthognathic surgery 10
Pain of plate removal surgery 6
Average pain levels for me
Pain level on a good day 3
Pain level on a bad day 6
This time last year, I dyed my hair red to celebrate my transformation and achievement and this year I make a vow to myself. To be honest and to work on myself. To stop cutting everyone out and to really try to love me and everything I have achieved. As always I send my love and strength and hope that this blog continues for many years to come.