Hi there-
I have been dealing with symptoms of ES for about a year now.
I saw an ENT doctor back in October and he ordered a CT scan of my neck to see if elongated styloid was the issue. The ct scan did not show any elongated styloid’s but the ENT said my symptoms sound like they are ES.
After that appointment the pain that I was having seemed to go away. That is until about a month ago I noticed my symptoms starting again.
The random tings of pain in my throat, Globus sensation, fear to move my head or neck a certain way as not to trigger any attacks.
Has anyone noticed their symptoms worsening/lessening with the seasons or time of year? Or does ES just go away and come back randomly?
I am debating on getting a second opinion because I know the symptoms I am feeling and they are not normal.
Any advice?
Thank you to everyone for their continued support in this journey.
I had a CT 8 years ago because I was having pain in my neck. It was elongated styloid of 6.8 mm and 5.2 mm. Yes ES. I was told that when I was tired of the pain they could be taken out. The pain went away and I was not wanting surgery then. Now 8 years later and the ES is back and bad. I am in the middle of this long journey to get them taken out. I have so many symptoms now and I am so ready.
I posted this information after your other post so will repost it here as it’s more appropriate in this thread:
Hi @beccaaaaa1,
I want to encourage you to get a second opinion. It’s not just styloid elongation that can cause ES symptoms. Even if they aren’t long, the angle the styloids are growing, how thick they are, & how pointed or twisted they are all can contribute to the styloids causing ES symptoms. Another thing that can cause ES symptoms is having calcified stylohyoid ligaments. These connect the styloid process to the hyoid bone. In some cases, people’s styloids stay normal length but the ligament calcifies, often starting from the hyoid bone & up toward the styloid process. Many doctors do not recognize a calcified stylohyoid ligament as ES but it definitely is a form of it.
I don’t know whom you saw for your appt., but you can schedule a video appt w/ Dr. Samji in San Jose, CA, or Dr. Cognetti in Philadelphia, if you don’t want to travel. Another option would be Dr. Osborne in Los Angeles as we know he has done surgery for at least one person who had calcified ligaments but not elongated styloids.
I hope this info helps. Not every doctor or radiologist reads the CT scans the same so one person may measure the styloids as being normal where another sees them as elongated. Also, many doctors don’t look for calcified ligaments. They will be visible in the CT if calcified.
Definitely seek a second opinion - and, yes, my symptoms would come and go for years. It’s only in the last year that they’ve been so bad that I cannot function.
Yes my symptoms were intermittent and not constant, until they were at which point they were debilitating. I first started having symptoms around age 23 or 24 and they became unmanageable by the time I was 29 almost 30. Unfortunately they do not tend to improve if left alone.
Hi, for a second opinion you could have a dentist With a panoramic x-ray machine, do a panoramic x-ray. That would absolutely show elongated styloids. It is also not as expensive as a CT