On Revision Parotidectomy
Summary
The outgoing Head and Neck surgeon has left me in an uncompromising position. He has removed some of my superficial lobe, but not all of it. He has left a huge amount of my parotid gland in- about 70%, I have been told. A scan done one year after my operation showed that there is still some of the superficial lobe in, the deep lobe is all there, and there is some accessory tissue over the masseter muscle. The duct is still attached to the remaining gland. My surgeon did not cut my duct and tie it up. Below is a link to the MRI Neck images, which show how much of my left parotid gland remains.
My Situation 5 Years Since Surgery
We know that there is pathology in my salivary gland. It was found via ultrasound scanning and sialography at a London Teaching Hospital in 2015 that my parotid gland was not functioning properly. Mucous plugging and a thickening of saliva was detected, and was treated with ongoing sialendoscopies and steroid therapy. The histology of my parotid tissue from 2018 showed abnormality. It showed numerous calcifications, dense secretions in the ducts, and reactive lymph nodes. The parenchyma was sialolithiasis.
My remaining parotid gland is rock hard. It swells when I eat and drink, and it presses against my left ear. It constantly burns and the duct pinches. I did think that once parotid tissue had been removed, that the remaining gland would die, but this has not been the case. My gland still producing saliva, but it is still not functioning.
Because of my post-surgical paralysis, I am now untouchable to any incoming Head and Neck surgeon. I have seen over nineteen Head and Neck surgeons in the UK. They have all refused to remove the rest of my parotid gland because of the risk of further paralysis.
I appreciate that no surgeon wants to perform a procedure that could cause further paralysis. I also understand surgeons saying that they will only perform parotid gland removal unless there is a tumour there, as revision surgery is largely reserved for oncology patients, but, it is not healthy to have a salivary gland which is not draining saliva away, and which is calcified. There is no tumour, but benign abnormality hurts. I am in constant pain and I have no quality of life. It feels like there is an animal inside my cheek, which is constantly moving and burning.
My Plea To Head And Neck Surgeons
I have had many years to reflect on the risks involved if revision surgery were performed, the worst being permanent facial nerve damage. I have been living with incessant pain now for ten years, which is largely being caused by my damaged parotid gland. That is a decade of my life gone, and a decade during my prime years. During these ten years, my vocation, my relationships, and my ability to function normally have all been severely impacted. Both of my parents died at 78 years old. If I am to follow in their genetic footsteps, I have 30 years left of my life. I cannot live with this pain for another thirty years. I may have the ability to smile now, but I rarely do, because of unrelenting pain.
If I was left with temporary nerve palsy again, I recovered before. I would recover again. I know what to do now with eye taping etc. If I was left with facial nerve palsy for the rest of my life (and this may not happen with a pair of careful hands,) I would still have a better quality of life than what I currently have. Yes, it would be difficult. I would have to adapt, but I would cope. It is my body, and it is my life, that I am trying to desperately recover, and I would choose facial nerve palsy over this incessant pain.
Pathology Versa Chronic Pain
I find it frustrating that Head and Neck Surgeons do not hear me when I tell them that there has been a sustained improvement and reduction in my facial pain levels, following my superficial parotidectomy in 2018. I am able to eat and drink with less pain, and I don’t feel so systemically unwell. However, surgeons have told me that removing the rest of my parotid gland would make things worse.
Their argument implies that my pain is postsurgical pain. There is no way that the pain in my parotid area is post-operative pain. It is now five years since my operation. If I did have ‘complex pain syndrome,’ or pain related to scar tissue, then I can understand how further surgery would make things worse, but my pain is not coming from previous surgical injury. How do I know this? The pain that I have in the parotid area is the same gnarly pain that I had pre-surgery, just less of it, because some tissue has been removed. I can still feel the gland swelling and inflating when I eat and drink, and I still feel the duct pinching. Pathology was found in my parotid tissue and glandular malfunction was detected prior to surgery. We know that there is abnormality there.
Conclusion
I am certain that my residual parotid pain is coming from pathology in the remaining parotid tissue, and the thinned parotid duct. The case that I have been presenting to surgeons, but which does not get heard is, that if the removal of the parotid tissue in 2018 reduced the volume of pain that I had, then surely, removing the remaining tissue, and tying up the duct would surely be an amelioration. It may not resolve my surrounding periocular, ear or head pain, but it would solve one large piece of the puzzle.
I just cannot get heard with this one.
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