The Warrior Project: Portraits of Lindsey, Trigeminal Neuropathy
An installment of my special blog series “The Warrior Project” where someone with a physical or mental illness or disability shares their story with beautiful portraits meant to boost their confidence and increase awareness. This time, I am speaking with Lindsey, who was very recently diagnosed with Trigeminal Neuropathy, which was brought on by a recent surgery on her jaw to try and treat her Temporal Mandibular Joint Dysfunction. It causes intense pain, numbness and other symptoms (such as muscle weakness) in the face. Lindseys case is very complicated so lets hear it in her own words!
“My name is Lindsey. I'm Burnley born and bred although we've lived here and there before settling half a mile from where we grew up. I used to be a scientist but I retrained to be maths teacher 4 years ago after my son Karlis was born. It was the best decision I ever made - I love my school and the students and I have a really good work life balance. The past 18 months have been the hardest in teaching and we've come in very unfairly for quite a bashing. I'm geeky and proud - I love Doctor Who and Star Trek. My year 11s were gobsmacked when I told them I love killing vampires and draugr on Skyrim. I love knitting, sewing and a good book, usually a dystopian thriller or a random book on politics.
I was 17 when something first went crack and pop in my face. I yawned and it just went. It didn't settle so my dentist referred me into the maxillofacial specialists and was told I had Temporal Mandibular Joint Dysfunction (TMJD). TMJD isn't one condition, it's a collection of problems all related to the jaw joint. I have displaced discs, signs of arthritis, muscular problems and tinnitus. For a long time I was managed with botox injections and a splint, but fast forward to April 2019 and on a night out I ate a flat bread and it all went really wrong from there. It was like I had bitten into a piece of cement. I was in agony and it didn't get better. I got put on a waiting list for a joint flush but Covid delayed everything.
To look at me you wouldn't be able to tell - I've got very good at hiding it but the pain is always there. I can't open my mouth more than a thumbs width without it being painful and locking or popping. My face is really tender to touch, so alongside the tinnitus it really impacts how much sleep I get. Unsurprisingly it limits what you can eat as well. Basically if its chewy or hard it doesn't get anywhere near me so no steak, gum, toffee etc. Everything I eat needs to be soft or dissected into little pieces and it takes me a while to finish a meal. I also get these horrific bursts of pain that feels like someone is jabbing a screwdriver into the side of my head. It's so random so I never know when it will do it next. For my mental wellbeing I've kept working all the way through this and I'm lucky that I've got colleagues that look out for me and the kids I teach are also very perceptive about it and make sure I'm alright. Some days are better than others.
It's such an invisible pain and so I'm met with the "you don't look like there's anything wrong" or the inevitable talking down for not wearing a mask. In September 2020 I had a minor procedure to try and ease the symptoms. Things didn't really go to plan - the procedure was a technical failure, I got an infection and ended up back in hospital for a few days but the worst part was that my pain got worse and so did the nerve damage to my face. I've since been told that the blood supply was cut off to one of the branches of my facial nerve. This means I have weakness on the left side on my face. They literally broke my big cheesy smile. I was never told this could happen. This sent me on a spiral of depression and anxiety which I've been having counselling for since. For a long time afterwards I blamed myself for having the procedure but I've come to terms with that now - this wasn't my fault.
I had another procedure in April after getting a second opinion. That confirmed that there is a problem with my joint but the severity of my pain can't be explained with what they saw. A recent Pain clinic appointment was a disaster. To be told that I was on the recommended cocktail of pain killers and that as I was still working I couldn't have anything stronger was heart breaking. It's so frustrating because as bad as the pain gets work distracts me and keeps the depression and anxiety at bay.
I'm really not sure whats going to happen next. It's not easy waiting as the pain is getting worse. I'm waiting to see the neurosurgeons to see if there is a neurological reason behind the pain. There was talk of a potential joint replacement and that may still need to happen in the distant future but the extremeness of that terrifies me. I know what ever happens next, I've got an amazing network of people around me looking after me and sorting my care.
My advice to others going through a similar diagnosis: be persistent. GPs say go to the dentist, dentist say go to the GP - keep bugging them and don't be fobbed off. Be willing to take short notice appointments. I'm lucky that my employers knew I would take a cancellation if offered so it wasn't a problem when for my 2nd op I got 7 days notice and had to isolate for 3 of those and fit pre-op and other appointments in. It was worth it as I probably would have been waiting until next year. Also my biggest absolute essential is check that who you are being referred to is a TMJ specialist. My mum has been my biggest advocate and ass-kicker through out all this. I may be 31 but I still take her to all my appointments. I've had some pretty bad experiences and she has fought tooth and nail to get me seen and fixed. She hears the things I don't hear, she understands the medical jargon and I love her so much. I don't thank her enough for what she's done for me . And thank you Donna for doing this for me - I've reclaimed myself.
These were the first photos I've agreed to since my 1st op, I'm really self-concious about how my face looks and felt like my confidence had been stolen from me. I'd been chatting to Donna about it but had initially said no. I had another appointment at the hospital where things didn't really go well and said screw it, let's do it! If I'm honest I was really anxious but I didn't need to be because Donna was so amazing and funny. Having my hair and make up done was so relaxing, it's not something I normally do for myself. Dresses on, Rammstein playing and I had such a good laugh. I felt more relaxed the more photos Donna took and cuddles with Mavis made it even better!
My first reaction to seeing my portraits was “Wowser!” I didn't realise I could look like that. Looking at them I Feel like a weight has been lifted - I can do this, I don't look ridiculous and that fear of looking awful on camera has gone. It's helped me to reclaimed a part of me that was taken away. To anyone considering a portrait shoot with Donna I say, DO IT!! Donna is amazing and will put you at ease no matter how nervous and anxious you are. You will come out feeling like goddess and that you can do anything. I felt amazing afterwards and so will you!
Update September 2021: This week I got to see a neurosurgeon. Sadly we had to pay privately as the waiting lists are dreadful but it was the best bit of money we spent as I finally got a diagnosis for the nerve problems.
I have trigeminal neuropathy. It's basically the nerves of the face going haywire because of damage most likely caused by that first surgery. It's a bit different from neuralgia but the medical treatments are similar. My GP had the foresight to try me on some new medication which is actually the first line treatment for it so he got massive thumbs up from my Consultant!
I've named my demon. There's something about a name that gives you power over it. The thing about the diagnosis is it explains so much about why despite having a huge amount of local anaesthetic in my face, I was still in so much pain. It isn't all in my head, I'm not making it up. It explains why my nose goes numb, explains my cheek twitch and the godawful stabbing pains. I now have a long term treatment plan, including medications and a surgical option, under a consultant who was patient and kind and recognised the impact on my life.
Trigeminal Neuropathy isn't something that can be cured but it can be managed. I still have jaw problems to contend with but hopefully these will be easier to fix with this sorted. To get to this point took a lot emails and a fight for a referral letter. It has been worth it though and again a big shout out to my Mum for this (and Dad for the 200 mile round trip on his birthday!).”
Thank you so much to Lindsey for putting her trust in me, I could see how nervous she was on the day and I know she was super concerned about how she looked, but when I was editing the portraits I was blown away by the way her body language changed throughout the shoot, in the first images you can see shes still a little nervous (normally I would only choose the confident ones but I LOVED the journey you can see in her portraits!) but by the end, wow, what a transformation. She looks confident, glamourous and joyful, and I am completely over the moon at how happy she is with her images and how she can see that her gorgeous face, her beautiful smile is nowhere near as impacted as she thought it was. What a brave, stunning and inspirational woman she is. Thank you for sharing your story and your photographs Lindsey - Donna