My Story
Hi, I’m Felicia. I am 51 years old. I am a writer, and I live in the beautiful county of North Yorkshire. I have been trying to get a diagnosis and medical treatment for debilitating left-sided facial pain for twelve years.
I have been to fifteen NHS Trusts in the UK: to Ophthalmology, Ear Nose and Throat, and Oral Maxillofacial clinics within these trusts, but I have been unable to get a diagnosis or any conclusive resolution or treatment for my condition.
Orbital Cellulitis
My initial diagnosis in 2013 was orbital cellulitis. It was triggered by a flea bite on my left eyelid. It involves pain and swelling of the soft tissue around my left eye, cheek and in recent years, my left ear. Severe orbital pain was the main issue to begin with. Oral antibiotics were prescribed, and the most effective one was Linezolid. Pain and swelling around the upper lid have persisted. In 2014, the left levitator of my eyelid collapsed. I was diagnosed with a left ptosis, but I was told by ophthalmology that my ptosis cannot be surgically corrected until all of my symptoms abate.
Parotid and Masseter Pain
In 2015, the pain around my left parotid and masseter area became severe, and I was unable to eat or drink due to pain. It was found at a London teaching hospital that my left parotid gland was not working properly. Obstruction, followed by a thickening of saliva, known as mucous plugging, was detected via ultrasound scanning and sialography. This was treated with ongoing endoscopies and washouts, which only gave me short term relief.
Parotid Gland Surgery and Histology
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 have had a sustained improvement since that section of tissue was removed. My pain levels significantly decreased, but sadly, a lot of damaged parotid gland remains, 70%. A scan done in 2019, a year after surgery, has shown that there is still some superficial lobe left, the deep lobe is all there, and there is some accessory parotid tissue over the masseter muscle. The parotid duct, which is thinned (stenosis), is still connected to the gland. The surgeon did not cut it and tie it up. I came through surgery with moderate to severe facial nerve palsy (House Brackmann IV), but I recovered full facial function within five months.
Post Parotidectomy
My remaining parotid gland is still producing saliva, but it is not draining fluid away, and it is hurting me. The parotid tissue is rock hard. It swells when I eat and drink, and it causes me unrelenting pain on a daily basis. Endoscopies and washouts are not a permanent solution. I have asked numerous Head and Neck Surgeons in the UK if they will remove the rest of my parotid gland, but they have said that they will not remove it because there is no tumour and because of the risk of further facial nerve palsy. Understandably, Head and Neck oncology takes precedence over benign disease, but if a patient has been living with debilitating facial pain for this long, which is caused by a parotid gland where parenchymal damage has been found, surely removing the rest of it would make sense to bring the patient some relief? I have been clear with all of the surgeons who I have seen that if revision surgery were carried out, I would accept the risk of facial nerve palsy and that if I did end up with permanent facial nerve damage, I would have a better quality of life than I do currently living with this pain. The answer is still no.
No To Botox Injections
I have been offered Botox injections, which would slow down the flow of saliva in my remaining parotid gland. I have refused these injections because no aetiology has yet been identified, so it feels dangerous to inject Botox into my face, when we do not know what the cause is. If a bacterial infection is the cause, then Botox injections could make things much worse.
Left Sided Ear and Head Pain
My facial pain is not confined to the parotid and masseter area. I have severe left-sided periocular pain and pain around the left temporal artery, which radiates down from my left eye, through my zygomatic arch and down my left cheek to my jaw. Recent scans have shown left masseter enlargement and abnormality in the left buccal fat pad, but I have been given no answers as to what this abnormality is and whether it is being caused by residual parotid disease. Two years ago, I developed severe pain in my left ear, which is persistent and worsening. My ear feels full, my hearing is muffled and I have had dozens of episodes of pulsatile tinnitus. I cannot get answers as to whether my ear pain is being caused by pressure from my swollen parotid gland, fluid inside my ear, a damaged Eustachian tube, or whether there is some mastoid or temporal bone involvement and enlargement. I have persistent pain around the left side of my head.
Bacterial Infection – The Likely Cause
All pathology found points to a soft tissue infection as the likely cause. Cancer has been ruled out. Two Lyme disease serums have come back negative, but I have had consistent raises with my white blood count, and in particular with raised neutrophils. The pathology found from my left Superficial Parotidectomy, sialolithiasis, is likely caused by infection, as is the collapse of my left levitator on my eyelid. I have been taking oral antibiotics for ten years, but they only quell my symptoms – when I come off them, my symptoms return. Oral antibiotics are the only drug, which subdues my pain. I have tried painkillers, oral prednisolone and high-dosage anti-inflammatory tablets, but they offer me no relief.
Intravenous Antibiotics
I have seen four Infectious Diseases consultants, who have all discharged me after one appointment, even when my infection markers are raised. I have asked repeatedly for an admission to try intravenous (IV) antibiotics, but I have been refused. I have never been given a reason why IV antibiotics cannot be administered. One Infectious Diseases Consultant has said that until the remaining parotid tissue is removed and cultured, it is pointless to administer IV antibiotics until we know what the actual bacteria is.
Radiology Images
If this is a soft tissue infection, I am extremely concerned that if a medical intervention is not offered soon, the tissue and structures of my face will become irretrievably damaged. In my gallery, you will see that the affected side of my face already looks significantly different from the normal side. The CT Neck and MRI Neck radiology images show that a lot is going on in the area where I am in pain, but I am unable to get any answers as to what these images are showing. I am seeking a radiologist who can read these images and give me some long-awaited answers as to what is causing my facial and peri-ocular pain.
Impasse
I have reached an impasse in the UK. I have genuinely exhausted all of my options and reached the end of the road. I have made numerous attempts with fifteen NHS Trusts and private hospitals, in both England and Scotland to find a consultant who is able to diagnose and treat me, but I have not been successful.
It is a merry-go-round situation; when a GP refers me to a consultant, I am either refused an appointment or the referral is sent on to a different hospital – which also rejects it – or I am seen once and then discharged with no outcome. Door after door has shut on me, and I cannot knock on any more doors.
My Facial Pain Is Worsening.
My facial and peri-ocular pain is worsening, and it is making my life unbearable. I have no quality of life, and I have now lost a decade of my life seeking a resolution. This is a lot of time out of one’s life span. We are not here long. I have dreams and aspirations like the next person, but I cannot pursue my ambitions or live any kind of meaningful life. I am imprisoned by my facial pain and by this unforgiving system, which will not yield.
I am desperately seeking a diagnosis and medical treatment for this debilitating condition. Please look through my gallery, my blog and my download section. If you think you can help, or you know of a medical consultant in England or abroad who can help, please get in touch with me via my contact me page.
Thank you,
Felicia X
