I read the comment posted by delusive re: Waiting for UK Referral on Dec 7th last and I also read both of your responses and you seemed pessimistic in getting surgery done in the UK. I am interested because although I was diagnosed with ES in Dec last, I have had this condition for 6/7 years now. Despite constant appts with GP and being sent to ENT on 2 occasions plus having an MRI scan, nothing showed up.
Eventually an ENT Dr who had experience of ES in India confirmed the condition with a physical exam together with my symptoms.
After finding this website and reading the comments I have come to the conclusion I would rather have an operation than spend a lifetime on painkillers/drugs which I am on now as these do not cure the condition. Over the years my symptoms have worsened which means in the future I will be prescribed stronger painkillers.
However, a GP at the practice I attend has flatly refused to refer me for the operation because of where the operation would be carried out, that is an area full of nerves and surrounding tissue. Although he is not my GP I'm afraid that if I approach my own GP his influence would sway her opinion as he is a senior GP at the practice. I really don't know what to do but I do not want to be denied an opportunity of getting rid of this condition before it worsens. What advise would you offer me?
I would really appreciate any feedback you can offer.
I'm fuming for you! What right has this GP, who's probably never read up on ES, decide for you your treatment! Unfortunately (not that I'm particularly good at this myself!) I think you'll have to get a bit stroppy, but arm yourself with the facts first. Under the NHS, you are entitled to a second opinion, so a GP should refer you to someone more qualified for help. (If you Google asking for a 2nd opinion with the NHS, it will tell you your rights, you could print that out to take with you.) I would go to your own GP, and explain exactly how the ES affects your life- I wrote down a long list of symptoms I have so that I wouldn't forget anything. Ultimately, you may not find a surgeon willing to do the op either, but at least you'll have that chance to find out. I have an appt. at Addenbrooks next week, so I will see if he is willing to treat me. I'm very worried about the op, and as the pain is reasonably well under control, I think perhaps I should leave it, but then I think of the damage which is being done daily to the nerves by the styloid process, and think I don't want to leave it until it gets horrendous, and then it will be too late, and too much damage done to repair! So I think, if I'm given the chance, I would now take it, while I'm fit enough to hopefully get over the operation fairly quickly. I know it's hard to be assertive with doctors, but remind yourself their priority is probably their budget and not your well-being! Yes, it is a risky operation, but then that is what surgeons are trained to do, and you would be made aware of the risks by a surgeon. I don't know how well off you are financially, but sometimes if you can afford to see a consultant privately (I think about £200-£300), it gets you an initial appt. a bit easier, then you can have the rest of the NHS treatment privately. Although you do still need to be referred by a GP. If you have a surgeon in mind who has done this op before (Mr Axon at Addenbrooks is a skull base surgeon, but I don't know if there are any surgeons in London who do the op), then that can help. I was lucky that the consultant I saw initially, who was not at all helpful, got fed up with seeing me, so he was very relieved when I suggested someone to be referred to! Pester power!
Thank you so much for getting back to me so quickly and for the sound advice. It's given me something to work on and follow up. Yes you are right this GP didn't even know what ES is and had to look it up on the internet. I will update you later on and once again thank you.
Jules said:
Hi Pepper,
I'm fuming for you! What right has this GP, who's probably never read up on ES, decide for you your treatment! Unfortunately (not that I'm particularly good at this myself!) I think you'll have to get a bit stroppy, but arm yourself with the facts first. Under the NHS, you are entitled to a second opinion, so a GP should refer you to someone more qualified for help. (If you Google asking for a 2nd opinion with the NHS, it will tell you your rights, you could print that out to take with you.) I would go to your own GP, and explain exactly how the ES affects your life- I wrote down a long list of symptoms I have so that I wouldn't forget anything. Ultimately, you may not find a surgeon willing to do the op either, but at least you'll have that chance to find out. I have an appt. at Addenbrooks next week, so I will see if he is willing to treat me. I'm very worried about the op, and as the pain is reasonably well under control, I think perhaps I should leave it, but then I think of the damage which is being done daily to the nerves by the styloid process, and think I don't want to leave it until it gets horrendous, and then it will be too late, and too much damage done to repair! So I think, if I'm given the chance, I would now take it, while I'm fit enough to hopefully get over the operation fairly quickly. I know it's hard to be assertive with doctors, but remind yourself their priority is probably their budget and not your well-being! Yes, it is a risky operation, but then that is what surgeons are trained to do, and you would be made aware of the risks by a surgeon. I don't know how well off you are financially, but sometimes if you can afford to see a consultant privately (I think about £200-£300), it gets you an initial appt. a bit easier, then you can have the rest of the NHS treatment privately. Although you do still need to be referred by a GP. If you have a surgeon in mind who has done this op before (Mr Axon at Addenbrooks is a skull base surgeon, but I don't know if there are any surgeons in London who do the op), then that can help. I was lucky that the consultant I saw initially, who was not at all helpful, got fed up with seeing me, so he was very relieved when I suggested someone to be referred to! Pester power!
Pepper, just to correct what I said about paying to have a private consultation, if you might consider that, then you have the rest of the treatment on the NHS, not privately- didn't check what I'd written before I posted!