Rare Disease Day: Living with an Undiagnosed Condition for 11 Years

Introduction

I am a 50-year-old woman from the UK who has been suffering with an undiagnosed condition for 11-years for which I am seeking a diagnosis and medical treatment. I have been to 15 NHS Trusts in the UK, who have all closed my case. It has been soul-destroying. My condition involves debilitating left-sided facial, periocular, and head pain. Cancer has been ruled out. Medics have not identified a cause, but the pathology found in my soft tissue and blood samples, point to the likely cause, being a complicated SSTI, or chronic cellulitis, with possible lymphatic drainage damage (lymphoedema).

My Medical Backstory

My condition started in 2013. The trigger was a flea bite to my lower left eyelid. My GP diagnosed me with orbital cellulitis. My symptoms were pain and swelling around my eyelid and cheek. I have had raised infection markers from the get-go. In 2014, a professor of ophthalmology diagnosed me with a left ptosis, which he said needed corrective surgery once my symptoms have abated.

Figure 1: My Left Ptosis

In 2015, the pain in my parotid and masseter region became severe. The area became hardened. I could barely open my mouth. Dental radiologists detected obstruction in my left parotid gland, which they treated with wash-outs. In 2018, I had a left superficial parotidectomy. The histology showed dense secretions in the ducts, numerous calcifications and reactive lymph nodes. The parenchyma was sialolithiasis. I came through surgery with facial nerve palsy, and recovered full facial function in five months. Unfortunately, the surgeon did not do a scan before operating. He went in blind. He has left a lot of my damaged gland in; some of the superficial lobe, all of the deep lobe, and some accessory tissue remain. He did not cut and tie up my parotid duct, either. I have been unable to find a surgeon to remove my remaining gland.

February, 2024

I have severe pain in my left parotid and masseter area, and periocular pain, which is acute around my left temple. I have persistent pain around the left-side of my head, and in my left ear. I have a feeling of fullness and pressure in that ear. Scans have shown an enlarged masseter muscle, and abnormality in my left buccal fat pad and retromolar area. Both my GP and the NHS Trust, who found the abnormality, have not explained what the abnormality is nor taken any action.

Antibiotics

Antibiotics are the only medication that quell my symptoms, but when I come off them, my symptoms return. Doxycycline, erythromycin, clarithromycin, and azithromycin are all on repeat prescription. The antibiotics that are the most effective are Cephalexin, 500mg (which has been prescribed intermittently) and Linezolid, which I have only been able to get twice. Intravenous antibiotics were administered once, for 48-hrs in 2014. I have been unable to get them administered again. Consultants tell me that it is the anti-inflammatory agent in the antibiotics that I am responding to. However, when I take anti-inflammatory medication, (Naproxen 500mg and Ibuprofen 600mg,) for achilles tendonitis, they have zero effect on my facial pain, so that theory doesn’t stack up.

Impact On My Life

This medical crisis has impacted every aspect of my life, from my career to relationships and friendships, through to my overall inability to participate in the world, and my feelings of low self-worth. It is impossible to accept losing the quality of my life, when indignation and resolute resistance from the medical profession has contributed to this loss. Medical professionals could put this right, if they would just listen to me.

Gaslighting

I have experienced both medical gaslighting and discrimination from many medical consultants. The gaslighting has ranged from consultants changing abnormal scan images on their computer and telling me that I am ‘seeing’ things, to ignoring abnormal blood tests, and not acting on abnormal scans.

The impact of their behaviour on my mental health has been profound. In February 2023, after a serious gaslighting incident, I decided to walk away from these consultations, for my sanity. Eleven years on a merry-go-round is enough. I chose, instead, to seek medical help via a blog and website that I have created; My Facial Pain; A Quest to Find Answers. It’s not an easy route, but if it means that the journey is free of abuse, that is optimal to being browbeaten by people who are forgetting that I am a human being.

My Unanswered Questions

I have many questions. Could temporal arteritis be causing my temple pain? I want to find out if an enlarged mastoid or temporal bone could be causing my ear and head pain. I also want to know if an infection has damaged my Eustachian tube or whether my ear pain could be referred pain from my parotid gland. The radiology images show a stark difference between the affected side of my face, and my normal side. Whenever I have asked consultants about these images, they tell me that it is just the ‘angle of the scan.’ This does not resonate as true.

 

A Call Out!

I have lost a decade of my life to this battle, and I am desperate to live a normal life again. Any infectious disease physicians, head and neck surgeons, (ENT or Oral Maxillofacial,) or ophthalmologists who have an interest in complicated SSTIs, please come forward. I have been a prisoner of my facial pain for 11 years. To walk free is all I want. I am seeking a diagnosis and a prognosis to find out what can and what cannot be done and whether my soft tissue is permanently damaged. I need to know the truth.

I know of a head and neck surgeon at the Mayo Clinic in Rochester, Minnesota. His name is Dr. Eric Moore. I admire this guy, but I am not sure if he specializes, solely in head and neck oncology. If anyone knows if he also deals with benign disease, please get in touch. I would love to see if he could remove the remainder of my parotid gland safely.

Any physician out there who can help, please get in touch by email; [email protected], or you can message me through my website. You can also find me on X @myfacialpain.

 

About the Author


Felicia Kate Solomon is the founder and author of My Facial Pain, a website and blog that is dedicated to finding a diagnosis and treatment for her condition. Felicia uses her platform to also raise awareness about issues that she has faced with the medical system, including Medical Gaslighting, discrimination, and stigmatization.

Felicia is a fiction writer. She is a graduate of the MA Writing Program at Sheffield Hallam University, and she holds a Post-Graduate Certificate in Creative Writing from Newcastle University. Felicia’s debut novel was published as a Troubador title, in 2019.

Felicia is a born and bred Londoner. She currently lives in North Yorkshire.

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