Coping with eagles

How does everyone cope with eagles syndrome it is ruining my life, the pain and dizziness on a day to day basis.

I am waiting to see an ENT surgeon and i am just hoping that they can do something, i carnt imagine what i can do if they carnt, it is ruining my life.

Has anyone been to a surgeon through the NHS in west yorkshire for this disease?

I just take it day by day, if u stress urself about eagles I find my symptoms get worse! Yesterday I had an impacted wisdom tooth that was trapped by my jaw bone removed it wasn’t a pleasant experience but I am now distracted with that pain to tink about es! Distraction is great! Keep busy

Hi, I’m in the uk, and had to travel miles and miles to find a surgeon competent in performing styliodectomy and I found that surgeon at Addenbrookes. He has patients travel from wales and Ireland for surgery with him. I am 5weeks post op and very very happy with how its all gone and my improvement.

Hi Kazza,

Living with it's not easy....I'm in a lot more pain at the moment, things have definitely worsened since I was diagnosed a year ago...I've got an appointment next week with the consultant who diagnosed me, but he's an oral doc so not a specialist. I'd like to be referred to perhaps Mr Axon in Cambridge, but I think that'll be a battle with the NHS!! Distraction does help if you can- but when you have to give up things which used to distract you because they're causing pain (I love cycling, but that's causing too much pain in my neck at the moment!) that's not easy. Trying long walks instead now. Was very lucky to have just had a couple of days away, in a lovely hotel with a hot tub- and soaking in that helped all the muscle pains in my neck and shoulders- bliss! Maybe I could get referred to a health spa for pain therapy- haha!

I get dizziness too, and that's hard, haven't found anything to help with that.

God gives me the strength to keep going- wouldn't want to do it without Him!

Jules

Thanks for answering to my post, i am experiencing very bad dizziness at the moment too, feel really faint when this happens, its just awful, preventing me from going out on my own sometimes.

Really scares you when your on your own and you start to feel so dizzy.

Yes no doctors take this seriously i am waiting to see a ENT specialist, waited ages, got an appointment in Dec so almost there, just hope something can be done, had some x rays done at Maxio facial which showed the elongated styloid on my right side, they wouldnt touch it said its running up my neck, and referred me to ENT, not hopeful though, dont want to live with this, its terrible.

Hi Kazza, I'm very sorry to hear your not doing well. I know there are some really terrible illnesses out there, although this Eagle Syndrome's symptoms are awful to live with and for me also it is 24/7 pain, dizziness, severe fatigue, all over body cramps and nerve twitching, severe skin peeling to my extremities, tooth pain, inability to sleep, heart palpitations and headaches. It really does upset the whole body chemistry and nervous system (well has done in my case). It really makes things worse when you do not get support from either family or the medical profession, makes you feel as thought you are crazy. Your not alone, I have gotten to the point now where I have had to take leave from my work as I am not coping with day to day tasks, even something as simple as going to the shop, I am so shaky and disorientated, really can play with emotions too. I used to be very athletic and would train everyday, that has completely gone out of the window. I have finally been diagnosed with a severe case of ES and am I having surgery next Thursday, really hoping this can be sorted, only having one side done first and the other after as I have really bad calcification's on both sides right down to my voice box. My surgery will be in Birmingham, UK. It has taken 5 years to get to this point though, been a tough battle! I'm surprised that the maxilofacial have refused to do your surgery. I think it's a case of finding the right surgeon who can or is willing to do it for you. I have been passed from surgeon to surgeon as none wanted to do mine and always found an excuse and fobbed me off. All the best to you in finding someone to help you in Yorkshire.

Good luck with your operation Loubell; will be praying for you. Perhaps you could let Kazza know the name of your surgeon- Kazza, could someone take you to Birmingham? It'd be worth travelling for another opinion?

Jules

Hi Jules, thanks so much. I am having surgery with Mr Bernard Speculand and 2 other consultants at the Queen Elizabeth hospital in Birmingham. He has operated on ES twice in his career and also referred someone to an ENT for intra oral route. There is also another maxilofacial surgeon in Shrewsbury, Shropshire, Mr Sunhil Batiya, who I have had talks with, he has done the surgery once. I hope this helps.

Thankyou for your replies and your help it is so kind of you , it makes me feel a little better knowing someone else knows just what i am going through too.

When anyone hears what this illness is, they just laugh and say they havent heared of it, it is a terrible illness and it is ruining my day to day living also, i have arthritits in my knee also, ive been waiting to have an operation on it, but havent felt well enough to have the knee operation due to this eagles syndrome.

Thanks for all your support.

Karen

Loubell said:

Hi Jules, thanks so much. I am having surgery with Mr Bernard Speculand and 2 other consultants at the Queen Elizabeth hospital in Birmingham. He has operated on ES twice in his career and also referred someone to an ENT for intra oral route. There is also another maxilofacial surgeon in Shrewsbury, Shropshire, Mr Sunhil Batiya, who I have had talks with, he has done the surgery once. I hope this helps.