Hi I’ve just been diagnosed with eagle syndrome I have massive migraine constantly pain in right side of neck and throat specially when I move I when I talk it always feels odd in my throat as if something is in the plus I have constant pressure in my right ear and have lost hearing also, I have been told by my doctor that’s its in my right side he couldn’t give me much infomstion as I’m his first patient ever to have this and before me he has never heard about this. This means he could not give me much answers and I can’t see my specialist til end of March this is extremely difficult as I don’t know anyone with what I have I’m 23 with 2 young kids 11 months and 2 it would be good to talk and meet people with this condition. Can anyone however tell me if I have it in one side can I possibly get it in my left side? And what can be done to help fix it or at least ease it? And also anyone know why this happens? Thank you for help in advance
Hi!
Welcome to the site. So sorry you're suffering like this, especially with young children to look after too. On the positive side, at least you have a diagnosis, and a referral to a specialist- sometimes that can take forever! there are some members from Australia, who can perhaps give you advice about the best doctors to see; Emma has also done a list of recommended doctors- if you look in the discussions section you can find out those nearest to you. Has the person you've been referred to treated any ES cases before?
At the moment there's no definite known cause for ES; there seems to be a link to having tonsils out, quite a few people have had an injury to the neck, and others have thyroid and high calcium levels, and some consultants think that you're born with elongated styloids. From your CT scan, could you see if both sides were long, or just one? Often people have both sides long, but only one side symptomatic. But sometimes the other side can start later too.
The only 'cure' is to have the styloid removed, otherwise it's a case of managing your pain as best as you can. Can you get some medication for the migraines? I get a lot of neuralgia type pain along my jaw and face, so that's been helped with pain killers specifically for that. Other people might have suggestions for better painkillers for you, or you could look through previous discussions. Some people find sucking on cold ice lollies etc help, but for me that makes it worse, so I find a hot water bottle on my neck helps, and sleeping semi-upright helps with the pain at night too.
I hope that you can get some help soon- have you any family around for support? Also, just an idea; I don't know if there's any Home-Start Australia schemes in your area, but if so they could perhaps help you so you can have a bit of a break and some support as you have young children?
Sending you a hug, God Bless.
Thank you jules what’s a home start schemes are u talking about?
I have no idea if he has or hasn’t yet all I know Is that my doctor was talking to him about it the other day,
From memory the only thing that i recall doing to my neck is a car accident I had over 2 years ago which resulted in my partner breaking his neck I also still have my tonsils in aswell
Home-Start is a charity which helps families with young children; a volunteer can come in and spend time with the children if parents are finding things difficult, perhaps because of illness or all sorts of reasons. I volunteer with a couple of families in the UK, I did google it and they work in Australia too. Try googling Home-Start Australia to see if there's any schemes in your area.
Stac01 - I agree with what Jules said. You can definitely get Eagles on both sides. And surgery is really the only cure. Lots of people get medications to help get them thru until they can get a surgery. Some people have some relief with nerve pain medications like neurontin (don't know what it's called in Australia). Some other people find more relief from facial pain medications like amitriptyline and nortriptyline. For the migraines you may need a narcotic or something else they treat migraines with. If you find a good pain doctor, he or she may be able to help you deal with things until you can get it fixed. A lot of us have had many trial and error periods with different medications. It's hard to tell what will work and what won't because you don't know exactly what nerves are being irritated.
Try to read through as many of the past discussion as you can to get a better picture of what you're dealing with. The more knowledge you have, the more you can distinguish if what the doctor is saying makes sense to you. Unfortunately, a lot of doctors don't know much about Eagles because they haven't seen that many cases. And I've discovered that if they've only seen a couple cases, they tend to think that all other Eagles cases will be exactly like the ones they've seen and that's just not true.
I'm so sorry you got this when you're a young mom. But this forum is a good place to get information - which is a really good thing.
Ok - the only thing I would disagree with Jules about : ) is that we're trying to make it known that the doctors on the list are NOT "recommended". These are doctor who we know have done a successful surgery on at least one of our forum members but in some cases, they've been unsuccessful with other members. We want everyone to know that we can't be certain about naming any doctors, but these are a good start.
We're in the process of updating the doctor list and should have a new one to post in the near future. I just checked it and there are 3 doctors listed in Australia .
| Pindara Specialist Center | Dr Sam Dowthwaite. |
| NSW Australia Callaghan University Drive Callaghan NSW 2308 Australia | Dr Andrew Salmon |
| Geelong Victoria | Dr. Roy Nicholson |
I don't know if they're anywhere near you, but if not, you may be able to call them and talk about your situation. They may be able to refer you to someone else too.
Hi Stac01!
I was just diagnosed too. I'm so sorry to hear that you're in chronic pain and have two little ones to care for! It's a lot harder to manage everything with little kids. I understand. I have two preschoolers, no husband, a commute from hell and full time job. Keep seeking a doctor who has experience with ES. As you've probably figured out, it's very important that you eat properly and sleep well. Sleep is hard to control with a 2 year old and 11 months old. Is anyone able to help you with the kids at night?
Many people on here are wonderful! So glad you found this site.
Sorry - wrong choice of words with 'recommended' doctors, thanks for the work you're doing on the spreadsheet :)
heidemt said:
Stac01 - I agree with what Jules said. You can definitely get Eagles on both sides. And surgery is really the only cure. Lots of people get medications to help get them thru until they can get a surgery. Some people have some relief with nerve pain medications like neurontin (don't know what it's called in Australia). Some other people find more relief from facial pain medications like amitriptyline and nortriptyline. For the migraines you may need a narcotic or something else they treat migraines with. If you find a good pain doctor, he or she may be able to help you deal with things until you can get it fixed. A lot of us have had many trial and error periods with different medications. It's hard to tell what will work and what won't because you don't know exactly what nerves are being irritated.
Try to read through as many of the past discussion as you can to get a better picture of what you're dealing with. The more knowledge you have, the more you can distinguish if what the doctor is saying makes sense to you. Unfortunately, a lot of doctors don't know much about Eagles because they haven't seen that many cases. And I've discovered that if they've only seen a couple cases, they tend to think that all other Eagles cases will be exactly like the ones they've seen and that's just not true.
I'm so sorry you got this when you're a young mom. But this forum is a good place to get information - which is a really good thing.
Ok - the only thing I would disagree with Jules about : ) is that we're trying to make it known that the doctors on the list are NOT "recommended". These are doctor who we know have done a successful surgery on at least one of our forum members but in some cases, they've been unsuccessful with other members. We want everyone to know that we can't be certain about naming any doctors, but these are a good start.
We're in the process of updating the doctor list and should have a new one to post in the near future. I just checked it and there are 3 doctors listed in Australia .
Pindara Specialist Center Dr Sam Dowthwaite. NSW Australia Callaghan University Drive Callaghan NSW 2308 Australia Dr Andrew Salmon Geelong Victoria Dr. Roy Nicholson I don't know if they're anywhere near you, but if not, you may be able to call them and talk about your situation. They may be able to refer you to someone else too.