Thank you so much for sharing. I have been in touch with Mr Saunders in Bristol. He was helpful but was at pains to tell me that the operation would probably not be a success, which hasn’t inspired me. I am moving from Devon back to Hampshire soon so I’m planning to meet with Dr Hughes and Mr Axton.
I just find it so hard to understand why the GP in Devon refuses to refer me. I was diagnosed by a private ENT in Exeter (because gp couldn’t find anything wrong, not knowledgeable enough), and therefore I have no NHS ENT history yet. GP says only a consultant can order a CT and/or refer out of county. It’s so frustrating. I will see both these chaps privately and if they can help I will ask for their input towards a referral.
I hope you found the surgery helpful and that you will soon be free of pain.
I would’ve thought that the ENT yiu saw could still refer you- hubby has seen a cardiologist privately & was then referred for surgery with a different cardiologist for surgery on the NHS; is it worth ringing that consultant’s secretary & explaining the difficulties you’re having with your GP? They might be able to help. Also getting a CT before you see Mr Axon isn’t a problem as he likes to get his own done. Fingers crossed for you…
Hi Julia, I had my first removal of amyloid in 2003.It has grown again on both sides but from the beginning my left side has always been the worse.It has grown at an angle and is pressing on my carotid artery.I have seen 6 consultants around the country and each one has said that it’s too dangerous to operate. I read on the site about Mr Axon at Addenbrookes hospital who has operated on vascular Eagles.My ENT specialist referred me to Mr Axon and I saw him last Friday, the referral was very quick.He has put me on his waiting list to operate!! I need an MRI to see the position of the Carotid artery and Jugular but he is very positive and is approaching the surgery from the top of the stylus rather than from the bottom up.This was my last resort and I cried when Mr Axon said that he could help me.He is a very nice, reassuring man.I have my MRI on 5th Feb and then wait for the operation.I hope that this helps anyone in the UK who is looking for someone that can help them.I will keep you posted.
Jan x
This is great news! Mr. Axon is likely the most experienced ES surgeon in the UK & has helped many of our UK members recover from ES. Glad you finally “found” him & are now looking forward to recovering from ES. I will pray that your surgery can be sooner than later.
Hi @Jules i understand that the procedure Julia had was external. But she says that she gets pain when the styloid gets stuck between the jaw and the nerve. Doea this happen as Mr Hughes did not remove all of her styloid? In my case he is offering a similar surgery and this is my biggest apprehension. What do you think I should do?
I can’t find a mention of what surgery Julia had in the end in this discussion, did you see it else where? Maybe she was describing this symptom before her surgery? It was a while ago though, so Mr Hughes may well have got more experienced with the surgery since then…
