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!
Thank you for this wonderful review. We’ve had a few members who’ve seen Dr. Hughes, but I don’t think anyone’s come back with such a thorough commentary about him. I am really pleased that you are feeling so much better and understand the desire for the remaining symptoms to go away. It is great that you have found ways to manage them w/o pain medication in the meantime. Nerve pain medication could help w/ the glossopharyngeal neuralgia if there is no other option for you. Many of our members have found they need nerve pain medication after ES surgery as sometimes nerves don’t fully heal.
I wish you the best & hope you are able to find a path to full recovery.
Thank you very much for giving us feedback about Dr Hughes; as Isaiah says we’d not heard back from anyone about how surgery went, so glad that you have! And very pleased that you have had a significant improvement in symptoms…I hope that you’re able to find some answers to your remaining symptoms though. Mr Axon has a very long waiting list, & if you have vascular symptoms he seems to be having to do a new protocol for testing which delays things even further if you were thinking of seeing him on the NHS?
Yes, I would wholeheartedly recommend Dr Hughes. He even returned my call when I rang him sobbing from A&E which was beyond the call of duty and he came to visit me on his one day off, the day after surgery. A good man, who just wanted to help. I wanted to see Dr Axon but I would have had to go through additional expensive tests with his vascular colleagues including lumbar puncture, before he could operate - and at the time I was absolutely desperate beyond belief for immediate help. I’ve been on amitryptyline and gabapentin but I put on three stone in weight and they eventually stopped working. I have 50/50 pain and no pain, depending on whether and when the nerve gets trapped, and I don’t think any neuralgia pill can mask the pain of a trapped nerve. Just have to grin and bear it. I take codeine and go to bed early on bad days! The only time I get concerned is with heart palpitations because of compression but it’s so hard to measure or treat because it’s so sporadic. I’m seeing my local NHS vascular team for that. There is not enough knowledge in the UK and it is not an operation many are willing to carry out (which is odd, seeing as so many are willing to take tonsils out from an early age, which is the root of my problem!), but I strongly recommend Dr Hughes whether people can afford to see him quickly and privately, or on the NHS - he deals with a lot of cancer patients, but he promises to try and see people as swiftly as possible.
Thank you, again, for sharing your experience. It’s really great to get a positive report about a doctor on our list. There are a few we hear about with some frequency so getting information about someone else is really helpful. Dr. Hughes sounds like a very compassionate & experienced doctor.
I’m sorry for the symptoms you’re still having & do hope the vascular team is able to help resolve the symptoms you have from intermittent vascular compression. I hope your nerve is no longer trapped & is simply still healing from your surgery so that pain subsides with time as well. It’s good to know that overall your symptoms are reduced & you’re feeling better.
Hi @julia did Mr Hughes just do this on one side or both the sides? Did he just remove the stylohyoid ligament or a bit of your styloid too? Was the incision in the front of your neck or under the ear. I am having a similar syrgery with him and would appreciate your input. When you say your styloid gets stuck between the mastoid process and jaw? Was that not discussed before surgery? Please do reply as i have all these questions to which i need answers. If this was going to be the case why didnt he remove it completely from skull base?