Hello there, I am returning to this site because I have been meaning to leave a positive review for anyone struggling in the UK. In 2019 I had external styloidectomy and removal of tip of hyoid with Dr Jonathan Hughes in London (The London Clinic). He was, at the time, the only consultant who took me seriously and agreed to operate. I had reached such a low point I could not function for my children and I did not really want to live anymore. This man gave me a chance and improved my symptoms by about 70%. I had no side effects of the surgery, which went smoothly, despite being a rushed decision at a private hospital, which would not have been my preference. The scar healed quickly and is practically invisible. He is a very very skilled surgeon. He may not fix you 100% but you can feel completely at ease in his hands. He works at The London Clinic, UCL (NHS) and various other clinics around the south east. You can find his details on the DOCTIFY website.
I still have neuralgia and occasional vascular symptoms from the glossopharyngeal nerve which still gets trapped between mastoid/styloid stub and jaw…and I don’t think the loosening of the jaw after having stylohyoid chain removed helps…but it’s something I am learning to live with and I have been able to come off two sets of painkillers, and now fighting the pain daily with exercise and lots of sleep.
I will, as I am sure everyone does, still continue to explore whether anything more can be done to fix the symptoms. I am due to have a max fax assessment, I am being monitored by vascular team and I am hoping to revisit Dr Axon in Cambridge for advice on whether any further surgery is wise. But I honestly wouldn’t still be here if it weren’t for Jonathan Hughes so please see him if you need help in the UK!