I’m considering going to see Dr. Axon privately to discuss surgery, but I have a few questions for anyone that had surgery with him.
I was initially put on a waiting list for a local ENT surgeon to do a trans-oral robotic surgery but unfortunately he hasn’t operated other patients with ES and I’m quite scared to go ahead with it so I would prefer Dr. Axon to do it instead.
What were your symptoms before the surgery? Have they resolved post surgery?
How was the recovery post surgery, especially the first few days (was it very painful, was swallowing ok etc) and how long did it take you to go back to work and feel somewhat normal?
Did you have any complications post surgery?
Were you asked to go back to Dr. Axon for a post op check up and if yes, how long after the surgery?
I haven’t seen Mr Axon for private surgery, but I did have surgery with him on the NHS. I had nerve pain in my jaw, teeth and ear, and pain in my neck , but the vascular symptoms were worse. I had bilateral IJV compression, so had head and ear pressure, off-balance/ drunk feeling, dizziness, tiredness, brain fog & some other scary symptoms, as well as pulsatile tinnitus. (Mr Axon is very interested in pulsatile tinnitus & was doing a research paper at the time, so that symptom got his attention!). Recovery after surgery wasn’t too bad- I took coedeine in hospital (Mr Axon uses a drain to help with swelling & preventing infection, so you have to stay in overnight while it’s in), but only needed paracetemol once I got home. I had no trouble swallowing afterwards, but couldn’t open my mouth very wide, I had to have soft foods & smoothies for the first week, which is quite common with surgeries. I couldn’t drive for 3-4 weeks, as it was difficult to turn my head. Overdoing housework etc would set me back, I was only doing voluntary work but as that involved liftig small children I took 4 weeks away from that to make sure I’d healed properly. If you have a desk job then you should be okay to go back earlier than that. Numbness around jaw & ear lasting a while, that’s pretty common. My second surgery was a bit different- I didn’t have any trouble eating after that one, but had a weird feeling around my ear, like concrete had been poured in it & I lost my hearing, but this was fine after 2 weeks. I could drive sooner after the second surgery too.
Although my surgeries were on the NHS, the first one was outsourced to Spire Lea hospital to reduce waiting list- I have to say that was a very nice hospital to have surgery in, & I was looked after really well!
I saw a different doctor for my 6 week post-op check up, but did see Mr Axon again between the 2 surgeries, I can’t remember exactly when though, I would imagine if you were seeing him privately that would be just with him, but not sure…
I agree with you that it’s best to see a doctor who has done the surgery before- I think some US members have had intra-oral surgery with robotics and it was successful for them, but I wouldn’t want to be the first patient!
Hopefully if anyone else has seen him privately they can chip in, hope the info about surgery is helpful though.
Thanks so much for taking the time to reply. I was hoping to have a private appointment with him, see what he thinks and then hopefully get on his NHS list for the surgery as it’s very expensive. I have tinnitus on the left side where the styloid is elongated, my tonsil hurts on/off as the styloid is at mid tonsillar level, I have this “pressure” type of feeling on the left side of my neck, under the jaw. Sometimes my left side of the throat hurts when I breathe in, eat, exercise. I will possibly book an appointment to see him in the next two months. I’m pretty worried about the surgery itself but I know he’s the best in the country for ES which is reassuring. I was quite happy to try and have surgery locally but the doctor doesn’t monitor the nerves during the surgery and when I asked about nerve damage he didn’t seem bothered at all which made me seriously rethink my options. I may not need surgery yet, as the symptoms are manageable and I can function normally, but I’m worried that maybe my styloid will keep on “growing” and by the time I see Dr. Axon and await surgery I will suffer terribly. Even now the wait for this surgery can be around 1 year or possibly longer so I think it’s wise to just go ahead and see him. Thank you for all your help
Yes, there are definitely long waits for surgery with Mr Axon! Unfortunately we have had a few members who have been refused surgery on the NHS with Mr Axon; it seems he has to get surgery approved by a committee now & there are strict criteria for who he can help. @Warrick saw him & did post about which symptoms you need to have before he can do surgery in this discussion: Can anybody help me to confirm if my CT shows elongated styloids? - Welcome / New User Help - Living with Eagle
So hopefully you would fit into that category!
