Summary

My medical problem began with a diagnosis of Orbital Cellulitis in 2013. This was triggered by a flea bite to my lower left eyelid. Periocular pain and swelling were my initial symptoms. They have remained chronic symptoms, which have worsened over time.

Acute pain in my lower eyelid was eradicated in 2014 with a one-week course of Linezolid. I have been able to only get the drug once in 2022. Since 2014, persistent pain and swelling around my upper eyelid, eyebrow, and the area around the temporal artery area has been persistent and acute.

In 2014, the levitator on my upper eyelid collapsed. I was diagnosed with a left ptosis, which I was told needs correcting. However, a Professor of Ophthalmology told me that until all of my symptoms have abated, it is not safe to perform the surgical correction of my left ptosis.

My Left Ptosis

My Symptoms Now

I have a gnarly pressing pain around my left eye. There is a constant feeling of pressure around my upper eyelid and eyebrow. The area burns.  I have severe pain around my left temporal artery, which feels tights and throbs constantly. The throbbing pain in my temporal artery region has worsened in the last year. It is now so bad, that it keeps me awake at night. My entire periocular area burns. It feels like I have hot mist under the skin. I am most worried about the pain around my temporal artery because of the blood vessels in that area. My vision in my left eye has also become blurred in the last two years. I now wear reading glasses.

Eye and Parotid Connection

My periocular pain is connected to the pain in my masseter and parotid area. It extends like a rainbow arch, down from my eye, through to my zygomatic arch and through my left cheek, to the region adjacent to my jaw. Below are two drawings that I did for a Medical Consultant in 2014 and 2016. They are supposed to illustrate that my eye pain and my parotid pain are connected. They are not separate problems.

In my drawings above, which I did in 2014, I highlighted the areas on the left side of my face where I experience pain. That same area is mirrored in the MRI scan images below.  It is clear from the scan images that all is not well with the soft tissue of my left eye and cheek, and that the problem with both my left eye and cheek is connected.

When I take oral antibiotics, my periocular pain subsides, but when I stop taking them, my pain returns. I have seen seven different ocularplastic surgeons in Ophthalmology clinics, at NHS Trusts in England. They have each discharged me after one appointment. I have not received a diagnosis or  answers re my orbital pain (apart from my ptosis diagnosis.) In spite of raises with my neutrophil and White Blood Count, no clinician has identified or named infection as the cause.

‘The Issue Is With The Tissue.’

I did get an acknowledgement from an Ophthalmologist, that this is a problem with my soft tissue. The Ophthalmologist who I most recently saw, said that the ‘issue is with the tissue.’  I asked him about the above scan images of my left eye, but he told me that ‘everything is normal.’ The pain around my eye does not feel normal. He said that it is just ‘the angle of the scan.’ This does not resonate as true. There are too many scan images from different hospitals and done on different dates, that show the same thing.

My Questions About My Periocular Pain

In the MRI Neck images below, there is swelling in the area around my left temporal artery, where I have acute pain. Could this swelling indicate inflammation of my left temporal artery, or chronic temporal arteritis? Would IV antibiotics improve things if infection is the cause? Or can steroids treat it?

 

In the one MRI and two CT images below, there is a heap of white surrounding my left eye and down the left side of my cheek, where I experience most pain.

Calcified Tissue?

The histology from my superficial parotidectomy showed calcified, hardened tissue. This report is available to view in my download section. Many of the radiology images, available to view in my gallery, show a lot of white on the affected side, particularly around my left eye. Could the white areas that surround my left eye be calcified soft tissue?  I am wanting to find out if this can be treated, or whether it is irreparable damage?

If the white areas are not calcified tissue, what could they be?

If anyone knows of an ophthalmologist, who specialises in ocular plastics and pathology of the temporal arteries, who could help cure my chronic periocular pain, please get in touch by Twitter, email;info@myfacialpain.com or via my contact page.

Photo by Priscilla Dr Preez on Unsplash

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