Hi all,
I have seen 3 ENT’s over the last few months and I am desperate for relief.
The 1st ENT told me I am making it up and I am fine because I am young (25 years old).
The 2nd ENT said it is ES, but he doesn’t do surgery. He saw 1.6 CM of calcification on the styloid ligament. He did not mention anything about the styloid process bone.
The 3rd ENT said the CT showed calcified ligament of 1.6 CM. He said surgery is too risky because the calcification is minimal. He also said I am young so it might not even be ES. He wants me to see a neurologist next. He was also googling ES during the appointment.
I have severe headaches, sore throat, severe ear pain, and PVCs. I am bed ridden sometimes for up to 2 days because of how bad it gets. I am desperate for relief and doctors are making me feel like I’m crazy because “I’m so young”.
Is 1.6 CM too small of a a calcification to be causing my symptoms?
Am I too young to have ES?
I have seen recommendations on here to see Dr. Milligan in Phoenix and I think I will do that. I didn’t realize how unfamiliar doctors are with ES.
Firstly, you’re not too young; we’ve had a 14 year old with ES who had successful surgery, so age isn’t an issue.
1.6 cms is barely average for ES (doctors consider anything from 1.5- 4cms as average, most consider 2.5 cms to be normal), but it’s not just the length of the styloid process which can cause symptoms, but also the angle and the width. The styloid processes are attached/ grow down from the skull base, close to where some of the cranial nerves exit, and it’s a very tight space, so if the styloid is growing at an angle it can easily compress those nerves. There’s info in the Newbies Guide Section about the nerves & what symptoms you can get if they’re compressed. Your symptoms could possibly be from ES but unfortunately there’s no definite way to tell except for having surgery.
Dr Milligan has done successful surgeries for members, so would be worth a try. Otherwise you can send scans to Dr Samji in CA for example, he does review CT scans & reports & do phone consults. Do you know if there was any calcification on the stylo-hyoid ligaments? Have you had a CT, & if so have you got copies of the scan & reports?
Hi Jules! @Jules
Thank you for your response. I have updated my original post to clarify that the ES the 2nd ENT diagnosed me with is calcification of the styloid ligament, 1.6 CM. There has been no mention of the styloid bone length being an issue.
I do have a copy of the CT scan but I have no idea what I am looking at.
The 2nd ENT I saw diagnosed me.
The 3rd ENT said there is calcification on both sides but on the side that is causing me pain it is 1.6 CM and he said to have ES it has to be 3 CM at least.
For many ES surgeons, having calcified ligaments w/o elongated styloids is a gray area. Most don’t believe/understand that calcified ligaments alone is also classified as ES. They wrongly believe that ES is only elongation of the styloid processes. We have several members who DID NOT have elongated styloids but had terrible ES symptoms from calcified ligaments alone.
As Jules noted, whether it’s the styloids or stylohyoid ligament calcification, thickness, angle, length, etc. all play in to the symptoms. Calcified ligaments alone can cause the hyoid bone to be tethered. It is normally free to move in all directions as you swallow, breathe, talk, sing, cough, etc. but when the stylohyoid &/or stylomandibular ligaments become calcified, that motion is hindered & pain results. Not only that, but the calcified sections can contact the aforementioned (Jules post) cranial nerves thus causing the pain you’re experiencing.
Below is a link to software that will help you convert your CT into 3D images. This will help you see what your doctors see. You can post 3D images on our forum, & we can give you our opinions, just keep in mind, we’re not doctors so can’t diagnose.
@Isaiah_40_31 thank you for your response! I will check out that resource to view my CT scan and I would be happy to upload it here if you believe users would be willing to give their opinion.
I think your ENT’s confused! Sounds like they’re not at all knowledgeable about ES…any calcification of the ligament which correlates with ES symptoms should be enough to get a probable ES diagnosis. (Some doctors measure the styloids on their own, sone tge styloids plus the calcified ligaments).
Hope you can upload the scan!
@Jules
Considering the ENT was researching ES on WEBMD with his cell phone during the appointment, I don’t believe he knew anything about ES. I ordered another disk today and I will have the images uploaded by the end of the week. I also got an appointment for the end of November with a Dr. Matthew Neal at the Mayo Clinic in Phoenix. I saw his name on this forum, I hope he is more knowledgeable.
I just looked for posts mentioning Dr. Neal & didn’t find any. That may mean that his name was put on the list long ago (this forum has been operating since around 2012) because someone saw him for ES/ES surgery. Some doctors on our list do stop taking ES patients or doing ES surgery. If you find this to be the case w/ Dr. Neal, Dr. Milligan has done 300-400 ES surgeries & is quite experienced. Our members who’ve been to him for surgery have generally had good results so he would be a great next step if you need to take one.
I leaned towards Dr. Neal because the 3rd ENT I saw named Dr. Rothman (who didn’t know anything about ES) recommended a neuro specialist for my next appointment.
Also, Dr. Rothman practices with Dr. Milligan at Arizona Otolaryngology Consultants. I was very unhappy with Dr. Rothman so that is why I made an appointment at the Mayo Clinic instead.
However, considering what you and Jules have said about Dr. Milligan’s success rate, I will make an appointment with him tomorrow as well.
Thanks for your response, Mnfarr37. I’m sorry for your experience w/ Dr. Rothman. Even though he & Dr. Milligan work in the same practice, that doesn’t mean the two doctors have equal knowledge or experience. I totally understand where you’re coming from though & would probably have high-tailed it out of there, too, if the doctor I saw was having to Google info about my condition during my appt.
Jules updated our Doctors List & reposted in on March 2019. Many of the names on the list have been there for years. We only remove a name when we learn from a member that (s)he has been told that specific doctor no longer deals w/ ES or has moved to another state, retired, died, etc. I am interested in knowing if Dr. Neal is still active in treating ES since his name hasn’t come up in ages so please let us know what you learn after you see him.
Lately after I’ve been eating I have this feeling that my throat is closing on one side and I am having trouble breathing. Is this normal for ES? It’s giving me anxiety when it happens and anxiety is not normal for me, and of course the anxiety makes it worse. I can’t wait for this to go way I wouldn’t wish these symptoms on my worse enemy. Thank you to everyone who has responded to my post and given advice. I will have my CT uploaded tomorrow.
The vagus nerve can affect your throat, swallowing & anxiety levels. I suspect your throat isn’t actually closing but the nerve irritation makes it feel like it is which sends alarm signals to your brain which causes adrenaline to be released. That elevates your heart rate which increases anxiety levels. Crazy throat symptoms are common w/ ES. I had the throat closing symptoms more during recovery from my first surgery, but as my nerves healed it gradually went away.
I’m sorry you’re struggling with that symptom. It is scary but expect it to go away after your styloid(s) are removed.
I agree with Isaiah that it’s more likely to be an irritated nerve giving that sensation rather than your throat actually closing, like the sensation of something poking the throat is. But it must be horrible, I feel for you, & with the anxiety too, I hope you can get treatment soon…
@Jules@Isaiah_40_31
Thank you for your responses. This forum has been a great resource for me to ease my worries, I would feel really alone as I’ve come to realize not many people, including doctors understand ES. I know it is just the sensation caused by the irritation, but when the anxiety starts it is a challenge to convince myself that everything is okay and it is just the ES. I am shocked at how weird these symptoms are over one tiny ligament. Truly, thank you for being an internet friend to me through this.
I just called Arizona Otolaryngology Consultants again and they will not allow me to see Dr. Milligan because I already saw Dr. Rothman. They said they do not allow second opinion. I am pretty livid and don’t understand why they would have such a silly rule. I explained that Dr. Rothman was googling ES and he isn’t able to provide me proper care and they didn’t care.
That’s not good at all…I’m UK so not sure how your system works, but it seems crazy when there’s a doctor in the practice who is experienced with ES & you’ve seen someone who knows nothing about it! Did you mention when you made the initial appt that you had been diagnosed with ES & wanted clarification? If so, then it’s their mistake for putting you in to see Dr Rothman, so I’d think a complaint would be in order…
@Jules The 2nd ENT that I saw, that originally diagnosed me, referred me elsewhere because he does not perform surgery. He chose Dr. Rothman because he is about an hour closer to my house than Dr. Milligan.
Unfortunately, I didn’t discover this forum until after I had already seen Dr. Rothman or else I would have requested Dr. Milligan as I don’t mind the drive.
My fiancé and I filed a complaint with a few agencies and with my insurance as we believe their rule for not being allowed to switch doctors within the practice is borderline neglect considering Dr. Rothmans inexperience.
I guess this is common with specialist in Arizona, but I was unaware until now. I hope they can make an exception considering the rarity of ES.
I wouldn’t wish these symptoms on my worse enemy. Thank you to everyone who has responded to my post and given advice. I will have my CT uploaded tomorrow.