Hi! I am new here! Glad you have a nice supportive group. I will just read and learn from you from now on!
Hi, and welcome! We have had several members join who have EDS and/ or Chiari, I’m sure that they must be linked. Metabolic disorders are thought to be a cause of ES, so it would make sense that connective tissue disorders are too. Quite a few members have Vit D and calcium problems so are prone to bone spurs and calcification.
I noticed that the ES pain got a lot worse when I had other neck problems- I have a bulging disc C5-C6, and I think that maybe that small shift with all the neck bones pushed the styloids more into contact with the veins… I don’t know, it’s just my idea! My neck pain in general has improved post-surgery though, but obviously you have a lot more going on with your other health problems!
I don’t know what medication you’re on, but the shooting ear and face pain that you get sounds like nerve Amitriptyline, if you’ve not already tried those? (More info in the Newbies Guide section).
Some members have found the steroid injections really helpful, but they’re only a short-term solution.
Thanks, Jules! That’s great info.
Hello! I am actually participating in a study that is trying to determine if there is a correlation between ES and Chiari. The NS I see is a Chiari specialist he has noticed has noticed that there are some Chiari patients who have ES.
Wow! That’s really cool! Keep us posted about that.
Hopefully if you’ve read up a bit on medications you’re doctor would realise that you’re well-informed… but it doesn’t always work! We do advise on here though that people get as much info as they can, and print off info if necessary to take with them to appts. It’s not unreasonable to say to your doc that you think you might be having nerve pain (Eagles is mentioned as a possible cause for Glossopharyngeal Neuralgia and also Trigeminal Neuralgia which causes the shooting pains, or constant aching), and to ask if you could try a medication for that. Your doc should know which medications are advised for that sort of pain…
It is highly unlikely that there is a connection between Eagle and EDS (not saying one couldn’t have both or folks don’t win the lottery) BUT it is unlikely that if one did, there would be any connection Eagle’s Syndrome is a condition which involves hypo-mobility (tissues do not move enough), and is the opposite of EDS which is a hyper-mobility syndrome. 90% of Chiari is non symptomatic and when it is, it is a brain stem/CSF flow issue which is in most modern medical centers being treated NOW by shunting to restore the CSF and not surgically which has had VERY poor outcomes (except in cases where there is a syrinx) Although there are a few docs in the NYC area who would offer a package deal surgery…
Bulging discs is an entirely different issue and 80% of the population (over age 40) has one or more bulging discs so while one may have that problem its also unlikely to be connected. The numbers can’t run only one direction.
Sooooo what does one do? Start with a condition that has known issues on the list and that would be Eagle.
BTW EDS is a VERY well known condition, the first Doctor to teach on it was Hippocrates. Its was the basis of differential diagnoses and is still used to teach docs the process. It probably one of the first diseases 1st year medical students learn. Its popular lately on the internet to explain unexplained symptoms, but not so much in actual practice as a lot of it is controversial (the hypermobility version not the one you can test for.) None the less no doc should be dismissive of it when presented to them even if it is generally disregarded.
Thanks! Have a nice weekend.
One of the amazing things about EDS @ombili is that as a doc goes through the differential diagnosis for the hypermobility type he eliminates over 500 related conditions. Because it is a syndrome and not a disease (there is actually a big difference) I’d be a tad bit disappointed if a new doc didn’t go through the steps. But somehow they have a way of making us feel like hypochondriacs when they do. Really and truly it’s because we have been through it 19 time before but it’s the first time for them with their new patient and symptoms do vary between individuals.
Genetics is a funny thing. I have only 10 first cousins. Two are gone from complications of my disease. But of the 9 left, I am the only one that does not have Fuchs Dystrophy. How it skipped me I have no clue.
In any event hang in there. Good things will come. BTW we have an EDS community that could use your experience