Hey, I’m new to this forum, and to ES. I’ve not been diagnosed, but recently stumbled upon ES online and a lot of the symptoms apply to me. For years I’ve had chronic headaches with face pain and numbness, jaw pain, eye pain, pain at the roof of my mouth, neck pain and many other symptoms. All symptoms are on my right side. My chiropractor referred me to a regular CT without contrast after i brought up the possibility of ES. The first radiologist report showed both styloid prosesses at around 2,4cm. My chiropractor, who always goes above and beyonde, decided to go through the scans himself and measured both styloid prosesses to be 3cm, which later was confirmed by two radiologists. I’m now in the process of finding an ENT who’s familiar with ES. In the meantime I would love to get some tips on what to bring up during the appointment. I understand that it’s not just the length of the styloid process that counts, but also the angle and width. I’ve read that the normal length is between 2,5cm and 3cm, so I might be within the normal range. I’ve been to countless specialist in the past, and many times I’ve not been taken seriously, and it’s all been put down to stress. I usually end up leaving an appontment feeling defeated. Hopefully I’ll get some answers soon. I’ve posted some pictures of the CT scan, and I’d like some input. I’m aware that the members here are not medical professionals, but I’m sure you know a lot more than me.
Hi Mossy, & welcome to the site!
Your styloids do both look elongated to me, but the right side is interesting because it’s segmented- members have sometimes had fractured styloid processes (the styloids can be fractured quite easily, sneezing or laughing for example), so it could have been fractured at some point, or it could be the second section is not styloid process but calcified stylohyoid ligament.
The left side does look quite long too, it could be the CT, but it looks like there could be a bit of a gap at the top too.
It’s hard to get accurate measurements from the CT images as they’re taken in slices so it’s frustrating when doctors refuse to take it seriously over a 0.5 cm discrepancy. Also the angle & the width of styloid processes can affect symptoms too. There are links to research papers which mention these; it could be worth printing off to show a doctor if you have another appt.
I’m not sure if you’ve seen the latest doctors list; there are a couple of surgeons in Norway that members have had surgery with; would it be possible to see either of them? Here’s a link in case you haven’t:
Doctors Familiar With ES Countries Outside US Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
Best wishes!
Hi Mossy,
Ditto to what Jules said. Your styloids both look long but possibly segmented or fractured. Whatever the case, having the excess calcified portions removed will most likely help your symptoms subside to at least some degree. I hope you’re able to see someone knowledgeable about ES soon so you can get the help you need.
Hi, Jules and Isaiah!
Thank you for your answers. I do belive the left side isn’t segmented after looking through the scans, but the right certainly does look segmented. My right side is also the side with symptoms. After reading through some of the experiences and symptoms of other members, I do feel like it fits my symptoms. I also have problems with my heart rate, and I’ve noticed other members having the same issues. I have a fast heart rate and I also get these episodes that are triggered by bending over. My heart rate goes from being normal, to over 200bmp within a second. It can last from 10 seconds to 30 minutes. Cardiologist have not been able to explain why it’s happening, but they can’t find anything wrong with the heart itself. Maybe it’s all connected.
I’ve passed on the names of the doctors to my chiropractor and primary care provider, so hopefully I’ll get to see one of them soon. Thank you for your help!
Hi Mossy,
The vagus nerve controls heart rate & blood pressure. It is our largest & most extensive cranial nerve. It is often irritated by ES & can cause symptoms ranging from skull base to gastrointestinal tract & in between. It also affects breathing, swallowing & anxiety levels. I had a similar experience w/ my heart but mostly when I exercised. I learned my heart would race because my blood pressure would drop instead of elevating when it needed to. You may be experiencing a similar effect. This problem stopped after I had my styloids removed.
I’m glad your heart symptoms went away after the surgery, Isaiah. Thank you for taking the time to answer me.
I get something similar. Just today I was sitting having a snack and got this sensation my food was stuck and then my heart rate shot to 150 for like a minute and came down. I may have turned or bent over, not sure. If happens a lot. I know it’s not psychological. I pray it stops with surgery.
Surgery should help with your heart symptoms though the results may take a few months to become obvious. Nerves heal slowly.
Hi, one_day!
I hope surgery will help with your symptoms. Are you having surgery any time soon?
Tomorrow morning!
That’s great! Good luck on your surgery.