Just been diagnosed with ES

Hi everyone, I have recently ( in the last week) been diagnosed with ES. years ago I had a brain tumour and for the past 7 years I have seen 2 ent consultants, 2 neuro consultants and 2 maxiofacial consultants all of which have told me the same thing - neuropathic pain due to scar tissue, until I paid privately to see a pain consultant as I thought there was nothing anyone could do so I needed to control the pain.
He suspected ES, I had a ct scan on neck and voila!!! There it was. I have been through fess in the last year ( functional sinus surgery) which I dont think was needed and was diagnosed hyperacusis in my left ear and wear a sound generator, I am feeling so low ( which us very unlike me as I am a counsellor) I am waiting for an appt for a follow up to see where I go.
My left is 5.5 and my right 4.8.
Thankyou for listening.

So sorry to read your story- not surprising that you’re feeling low as you’ve been through so much already, & then to have to undergo unnecessary operations through being misdiagnosed… very tough. But it is good that you’ve finally got a diagnosis & can now move forward hopefully wit treatment for that…
There’s lots of info in the Newbies section, so I’d suggest having a thorough read of it to educate yourself as much as possible before your next appt. Unfortunately there’s still a lot of ignorance with doctors about ES, the symptoms & affects it can have. Knowing more will hopefully help you feel more in control!
I’m not sure what sort of doctor you’re seeing for your follow up appt? It would be good if you were able to see someone experienced with ES, or at least ask for a referral to someone else at your appt. if you’re not confident with the doctor you see- unfortunately there’s very few doctors who are that we’re aware of in the UK, but you could have a look in the Doctors Info section at the 2017 list. I saw Mr Axon at Addenbrooks- he’s really experienced, if you’re able to travel. (Also you could message Gra1; he’s just had surgery in London I think, so you could ask the name of his doctor- he felt he couldn’t give the doctors name openly on the forum, but as you’re in London too, he might be happy to share it with you).
Obviously there are some treatments other than surgery for ES, but they’re not cures- the only real cure is to have the styloid process & any calcified ligaments removed. But if you feel that you’ve had enough of surgery (?), then there are some other things which might help.
I hope that knowing you’re not alone helps you, feel free to ask anything, or have a moan etc. on here, we do understand!
Sending you a hug! :hugs: :bouquet:

Oh you have had a tough time. You now have a name and a diagnosis. So sad that you may be facing more surgeries. I have been through many the past few years and facing one or two more seems insurmountable, but I am trying to find someone in my area to do the surgery so that I do not have to have it in a different area and stay for a week or two in a hotel. May you be blessed to find a good consultant and get over the hill and into a valley of less pain and a better life. Whatever you choose, we are here for you.

Hello Ersaj,
Welcome to this group - lots of information and super nice folks here. So sorry you have been through so much. ES is a crazy thing and will make you feel crazy as well, but don’t give up…there is hope now that you are on the right path. Getting that diagnosis is EVERYTHING! Now you have confirmation that you are not imagining these things! Some folks have tried the physical therapy approach and done well with it for a bit. For me the physical therapy just seemed to aggravate the situation. I hope you are able to be prescribed pain medication for those days that seem a bit harder than others. I have only had my diagnosis for a month or so and am awaiting my first visit with the surgeon. I think each days still seems better than the one before so I think you have much to look forward to. Now that you know what it is, you will better be able to kind of tell what’s happening with the various levels of pain and the triggers for it. When something is hurting, try just changing the position of your head/neck, etc and you may get some relief that way. Knowing what it is and how it is affecting you really is somewhat freeing. I hope you are able to get some help and relief soon. Please let us know what you find helpful and what is not.

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