Relatives with same symptoms

I am wondering if anyone else has relatives with this? My niece is now having the same symptoms as I was when I was young. They were not as bad then ear pain off balance. They progressed over the years. She is just 16 and has not looked into eagles. I was told by a eagles doc he does not c this in same familiesvmembers but she seems to have what I do

No family members with symptoms.....actually I never even heard of it until my diagnosis! I have 6 siblings all with children of their own. If your niece has symptoms, at least your issues can help point her in the right direction to have Eagles checked out!

What may be possible is an underlying problem/disease that causes the calcification that may be related that makes you more prone to getting Eagles???? For instance, it seems like I read a few people that have Eagles also have Ehler-Danlos Syndrome or Fibromyalgia, Lupus or Lymes (which I don't know if any are genetic). Just a thought to consider. I have always wondered how many of us may have some underlying genetic issue that may cause the calcification in our bodies. I am by no means trying to say that everyone has an underlying condition, just thought myself about can this be genetic.

My Mum has had neuralgia problems intermittently and balance/ ear problems- she has been diagnosed with Meniere's disease- and she has neck pain too. I don't think her problems have been bad enough for her to seek any other investigations/ diagnosis, nor would they be for surgery if it was ES , but it seems strange that a lot of the issues she has are the same as I get which I'm convinced are ES. I have an identical twin too, and although she doesn't have any symptoms, it would be great if she could have a CT to see if her styloids are long too. That might shed more light on things!

My first cousin has ES. We also both have vitreous detachment in both eyes. This is when the vitreous humor detaches from the retina. In his case, one of his retinas tore, & he had to have surgery to repair it. So far, my retinas have stayed intact.

I was told that this syndrome is not common in children and/or teens. But if you google Eagles Syndrome with a specific age, many cases will come up. I have seen them with children as young as 9 or 10 years of age. There isn't enough known about Eagles for them to say its not genetic. My question to that doctor would be how many families of patients did he do CT scans on to come up with that conclusion or is it based solely off the fact that only one family member has been to the doctor.

She could always go to a Chiropractor for a neck adjustment. They will do x-rays first and the Eagles will show up on them. If the eagles is there say that your concerned about what that is and want to get that checked out before getting the adjustment done. Just encase its probably wise to become familiar with what eagles may look like on an x-ray so you can point it out - since you and/or your niece know about eagles and chances are the Chiropractor doesn't.

yes, I have a cousin that was actually dx but took the medication route. She also has had a heart attack recently. I think back at all those on my dad's side that have died of heart disease and wonder.

I am sorry about the heart conditions. How do you think they r related?

Eagles caused a lot of issues with my heart. If you look at a diagram of the heart the top is right in between your collar bones. Blood going to your body is released through the Aortic Arch and up the right and left common carotid arteries. It Y's around the jaw into two smaller arteries the internal and external carotid arteries. The right side of my eagles was not only pushing downward on the Y but when I moved my head it would put pressure on either of the arteries making my heart beat fast.. extremely fast. When the blood supply is cut off the heart beats faster trying to get blood where it needs to go so that your body doesn't get deprived of oxygen.

LAD, your explanation of ES & heart issues helps to explain & make sense of the crazy heart problems I was having during intense exercise. I've had one styloid removed (perhaps the offending one) & am anxiously awaitiing removal of the other one. I've been to my cardiologist a couple of times & even w/ a stress test, he sees nothing wrong but is concerned about these oddball symptoms. If the cause is ES then the symptoms should go totally away after my next surgery.

So glad you wrote your post! I hope you've been able to have your styloid(s) removed & are feeling back to normal.

Thanks so much for that info. I have had so many weird things with being shaky like my adrenaline is turned on and always low blood pressure since childhood. I am now 52 and evidently it is unusual for a person my age without heart failure to still have problems with love blood pressure. I have often been told to eat lots of salt by various health care providers. I have not had surgery as my case is a bit complicated and I want to make sure I get the right surgery. I have my jugular being compressed by my styloid. I know most surgeons do not take the amyloid back to the skull base. I am wondering lad how much steroid do u have left?

I meant LAD, how much styloid do you have left?