I was diagnosed with ES last December. Apparently it's on both sides, but the symptoms are only on my right side. I think my calcifications are actually not too big, and I have been told surgery isn't worth it for me as the risks outweigh the possible (and unknown) benefits. My pain is minimal compared to what I have read so far on this website. But I do have consistent pain in my right shoulder, neck, down my right arm. The pressure points on my head are almost always on fire. I get a referred pain into the area under my tongue when I have massage ... which makes me strongly suspect that the ES is causing heaps of the pain in my upper right hand side. And if I push under my tongue from the outside on my right hand side, it really hurts.
I have never had my tonsils out. I have had problems with too much Calcium in my system, but don't know how it is at the moment.
I would dearly love to see a doctor who actually knows what they are talking about. The 2 ENT's or pain specialists I have seen so far have given such completely different advice, and were far too dismissive about actually listening to me anyway. I currently live in Singapore but I come from Sydney, Australia. So a doctor there would be good, or also in the UK as I visit there when I can. So if anyone knows of any doctors in these countries, or even these regions, who know what they are talking about, I would be hugely grateful. Every few years I also get to Joseph in Oregon, so a San Francisco, LA or Oregon doctor (ideally Portland) could work too.
I am quickly learning it's not that great having a rare medical issue!
Some of the members have kindly done a spreadsheet listing doctors who've done ES surgeries. There aren't loads! But if you look back in the previous discussions you'll find it. The doctors are right in that the surgery does have risks of nerve damage, so shouldn't be undertaken lightly, but on the other hand most doctors don't realise the extent of the symptoms we get from ES, and that the symptoms can worsen; sometimes leaving it if the styloid is pressing on a nerve can also cause permanent nerve damage! There is also the results of a survey in the previous discussions listing the symptoms a lot of us get. The pain under your tongue is the same as I get; that is caused because the ligaments which run from the styloid process to the tongue muscles. I also get pain all through my neck and shoulders the worse side. I've always presumed that a lot of it is muscle tension from being tense with pain. Although if certain nerves are being compressed that could cause the pain, as could a compressed blood vessel.
I think your best bet is to read up as much as you can- there is some research on the internet, plus research on this site, and read through previous discussions, so you know what you're dealing with , as many doctors don't! (I was told by the first consultant I saw that the styloids wouldn't press on any blood vessels, only to find after referral to a new consultant and having a better scan, that the styloids both sides are compressing the jugular veins!!)
Good Luck in your search! I'm sure you will find someone in one of those areas! I know the closer to home the better, but finding a good surgeon familiar with ES is priceless! Keep us posted on what you find!
Good Luck in your search! I'm sure you will find someone in one of those areas! I know the closer to home the better, but finding a good surgeon familiar with ES is priceless! Keep us posted on what you find!
Christian22, Emma, and I updated the doctor's list and posted a new one a couple weeks ago. It's dated 3/3/15 and has the doctors arranged by location (states for the US and countries for outside of US). There's an excel version and pdf versions for those who don't have excel. I'll bump it up to the top of the list so people can see it.