I feel like this is a ridiculous question, and I’m sure I know the answer but I just need to ask it. Earlier this week my doctor diagnosed me and prescribed me pain meds, a muscle relaxer, and steroids. She explained what ES was and told me that if the pain goes away after a month of meds, then no need to do anything about it. She then said that if the pain continues, then we will do a CT scan. After educating myself and readying many forums here over the past few days…seems like she may not know the severity of it? Should I be demanding a CT scan now? Considering how dangerous it could be and seeing how the symptoms are affecting me (slowed speech due to a ‘tired’ feeling tongue and throat, excess saliva, headaches, extreme throat pain-like stabs, clicking in my throat, ear pain, etc) I am extremely nervous and want to know how long the styloid may be and if it is pressuring against anything serious. Any advice would help! I am going to a second ENT today for another opinion, I am not planning to tell him the diagnosis and going to see if he diagnoses me with the same.
Thank you all so so so much! I am so thankful I found this site!
You will all learn in no time…that I have horrible typos haha bare with me!!!
We won’t worry about typos!
For ES to be dangerous is extremely rare; vascular symptoms tend to be things like dizziness, fainting, pressure in the head (more detail in the ES Info section), so you can compare your symptoms with those. The symptoms you mention tend to be the more ‘classic’ symptoms. That said, things can change; ligaments can become more calcified & the styloid processes can continue to grow, & the pain itself can seriously affect quality of life… The only ‘cure’ is to have them removed, but some members find medications help enough that they don’t want to take the risk of surgery. (Surgery does carry a risk).
I can completely understand wanting to know what’s going on, so having a CT (ask for one with contrast to see if there’s any compression of blood vessels) isn’t unreasonable. Nor is not wanting to take a combo of steroids, muscle relaxers & pain meds for the rest of your life, as they’ll potentially have side effects, so if they do work, it should still be your decision as to whether you want to live with it or have surgery.
If your doctor is knowledgeable enough about ES to diagnose you with it, then I’m surprised she’s not willing to do a CT, just to see what’s going on!
I hope that you get on okay with the ENT you’re seeing today, if not you may have to get pushy if you feel you want surgery. Unfortunately there is still alot of ignorance about ES with doctors, & unwillingness for alot of them to do surgery, but there are doctors who will, so it may take time & going through the doctors list in the Doctors Info section to find one.
Let us know how you get on!
Thank you so much!!! After getting a second opinion, with a doctor who blew me off and told me to see a chiropractor for the pain in my throat, I decided to call the original doctor back for further discussion. I let her know that I have read many medical studies and educated myself in many ways, and she assured me that no one has ever had a stroke or died from ES…she even went further to say that if I did stroke because of it, that she would become famous from writing the first research in ES with a direct stroke correlation. After hearing that I am even more nervous, as clearly there IS a correlation based on what I have read. I am debating calling one of the doctors on the list I found in a forum, who has direct experience with this (as my doctor is knowledgeable but has not ever seen it or treated it). I decided to take the meds for two weeks to see if there is a difference in my symptoms, as she is refusing to do a CT scan unless I try meds first. This is just nerve racking! I have two littles and am a very active parent and am active in my job as well. I am nervous as these symptoms has become more prevelent lately, and if they are worsening, I don’t understand why a doctor would refuse a CT scan. Thank you again for all of your support and knowledge!!!
It is frustrating- if you do go back to her, I would find the research pieces , print them & take them with you! The first consultant I saw told me that the styloid processes couldn’t affect any of the blood vessels in the neck as well, but like you, I’d read up & knew they could, so I asked for a referral to a more experienced doctor. He did a CT with contrast, & that showed bilateral compression of the jugular veins! A copy of his report was sent to the first doctor, so at least hopefully he’ll realise how wrong he was now!
I can understand how worried you are, but hopefully in a couple of weeks you’ll have a clearer idea of what to do.
If you do decide to try another doctor, Dr Samji is the most experienced, although he doesn’t seem to worry about whether ES is vascular or classic, he just looks at a CT without contrast & is happy to treat using that. If you want to know more about him, Isaiah 40:31 knows him quite well!
Let us know how you’re doing,
best wishes, Jules