Summary

I have been suffering with left sided facial pain for ten years. My pain relates to the soft tissue and muscle inside my left cheek, from my zygomatic arch all the way down to my jaw. The most agonising area is the masseter and parotid area, which is rock hard, burning hot, and it inflates and swells constantly. The images below show exactly where I experience most of my facial pain: in the bottom corner on the left side.

 

 

Parotid Gland Histology

In 2015, a salivary gland unit at an NHS London Hospital found that my left parotid gland was not working properly. Obstruction and mucous plugging were identified and was treated with repeated sialendoscopies and Corticosteroid irrigation therapy in the gland. These only brought me short term relief. In 2018, I had some of the superficial lobe of my gland removed. The histology showed dense secretions, numerous calcifications and reactive lymph nodes. The parenchyma was sialolithiasis.

My Residual Parotid Tissue

I have experienced an improvement following the removal of some of my parotid tissue, but a lot of my gland remains, and my parotid duct has not been cut and tied up. There are four images in my gallery on the MRI parotid page, which show how much of my left parotid remains.

Left Parotid – My Facial Pain

A scan done one year after surgery, showed that some of the superficial lobe still remains, as well as the deep lobe and some accessory parotid tissue over the masseter muscle. Whilst residual salivary gland does sometimes shrivel up and die after surgery, mine hasn’t. I have a large amount of a malfunctioning parotid gland alive and kicking in my face. Every time that it pulls and inflates, it feels like there is an animal, writhing in my face.

Buccal Fat Pad Abnormality and Masseter Enlargement

Recent MRI and CT scans have shown left masseter muscle enlargement and left buccal fat pad abnormality, which have not been explained to me or followed up with any remedy or treatment.

The top two images show the buccal fat pad, and the image below shows my enlarged masseter muscle. Many surgeons have offered me Botox injections, which I have refused. I have refused Botox injection because no cause has been identified for my masseter enlargement, buccal fat pad abnormality, parotid disease or periocular pain. Botox injections could therefore make things much worse. If infection if the cause, then the problem needs treating at its source. We need to know what we are treating.

   I am on a quest to find diagnosis and a cause to my facial pain.

My Quest To Find Answers

• There are over 100 radiology images in my gallery, which show a stark difference between right side, (the normal side) and left side of my face. I have received no explanation re what this asymmetry is. When I ask consultants to explain these scans, they tell me that it ‘is just the angle of the scan,’ but I do not see how the asymmetry that shows in all of these radiology images can be due to the ‘angle of the scan.’
• I asked an Oral Maxillofacial surgeon recently about what the two MRI images below show. He told me that ‘it was coincidence that what I am seeing on the scan is where I have the pain.’ I do not believe that it is a ‘coincidence’ that I can see something wrong in the exact place where I am in pain. What do these images show?

• What is the abnormality in the Buccal Fat Pad?
• What could the white areas on the left side of my face? As the histology from my parotid tissue showed hardened tissue, could the white be calcified soft tissue?

 

• A scan done in 2019, showed that there is still some accessory parotid tissue over my masseter muscle. This report is available to view in my download section. Could my masseter enlargement be caused by residual parotid tissue disease, or could the masseter muscle now be damaged? Below is an image of my left masseter muscle. Further CT and MRI images are available to view in my gallery.

• What are the white areas, which are visible on the MRI Left Enhancement page in my gallery?
• Left Enhancement – My Facial Pain

 Seeking A Prognosis

I am seeking a diagnosis and treatment for my facial pain. Receiving a prognosis is also vital. I want to know if there is irreparable damage to my soft tissue and muscle. I also want to ascertain whether or not this is now treatable, or if it been left too long, to now treat? Ultimately, I am looking for a Head and Neck surgeon, who could remove my remaining parotid gland safely.

Getting Past One Appointment

I can never get past one clinic appointment with Head and Neck surgeons in Oral Maxillofacial Surgery and Ear, Nose and Throat departments. Numerous GP’s and clinicians have referred me to over forty clinics at fifteen different NHS Trusts. Secondary Care clinics either reject or close down my GP’s referral. Consultants will sometimes send it on to another hospital, who then bat it back to the GP or referring consultant with no outcome. Or consultant’s see me once, twice maximum, and then discharge me with no treatment plan. It is like being on a merry-go-round. I feel exhausted.

No-one seems to want to deal with my medical problem, because it is too ‘complex.’ However, what Consultants forget is that there is a human being under all of these scans and blood tests, a human being who is suffering, and who has completely lost the quality of her life because of enduring pain. This person wants the quality of her life back.

If anyone knows of a Head and Neck Surgeon, who has an interest in benign disease, please get in touch. You can contact me via email; info@myfacialpain.com, on Twitter, or via the contact box, on my Contact page. Many of the surgeons who I have seen, treat solely oncology patients. I am on a quest to find a Head and Neck Unit which diagnoses and treats benign disease. There is no tumour in my left parotid gland, ear or head. This is likely, long-term infection and inflammation with potential soft tissue and muscle damage.