Been a long road

General
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Hello all, I have been lurking here for a while and decided to post now that I have something concrete to contribute in order to add to the body of knowledge available on this website and to possibly help another person like me who stumbles onto this website looking for information and help. Sorry for the long post.

Much like everyone else here I have been on an a journey for over 10 years or so trying to figure out what the heck is wrong with me. I have been to ENTs, Neurologists, Headache Specialists and Physical Therapists along the way. I have tried too many headache meds to mention, nerve meds, dry needling, trigger point injections to the neck and TMJ, nerve blocks and botox. Several MRIs and CT scans. I’ve spent a lot of money on all of this to get very little help and it makes one very angry with our system to think about it.

My symptoms are below and are all on the Left side predominately:
-Daily persistent nagging ear pain. Can be sharp pain, can be dull pain, can feel like someone has shoved something up into my ear, can feel cool and can tickle. This ebbs and flows all day, can be bad at times and can not hurt at all but its everyday and my biggest issue.
-Pain/sore throat deep on the left side of throat. Intermittent but almost daily like the ear pain.
-I have a click/pain at times when swallowing with my head turned to the left.
-I get pain/tightness under the ear and down under my jaw/neck to my adam’s apple.
-I get neck pain along my left SCM.
-I get pain behind the ear on the mastoid process.
-I get pain behind my eye, above my eye, along my cheek bone, sometimes to the top of my head. I have also had pain to the left top teeth, this is not often though.
-I have chronic daily persistent headache, primarily on the left side. I also have chronic migraine, 15 or more a month. Thank god for sumatriptan.

I saw that you don’t have any doctors listed for South Dakota, I saw ENT Dr. Thomas Kenny who is in North Sioux City SD. He is familiar with eagles and knows what to look for. I was actually the second case in a week he saw. It would probably be beneficial to add Dr Kenny to your Drs page for someone in my region to see. Dr Kenny has done styloidectomies but primarily refers patients to Dr William Lydiatt in Omaha who is a head and neck surgical oncologist. I see you have Dr Daniel Lydiatt on your Drs page. Both Dan and Will look like they work in the same office and might be a father son team? Not sure but am going to ask.

At this point I am going to see Dr Lydiatt for a consult and am scheduled for a injection into the area of my styloid to see if it relieves the pain at all.

I’m still on this journey and for all I know Dr Lydiatt might look at my scans and come to a different conclusion about what is wrong with me.

I don’t have overly long styloids but they are longer than is normal and on the left side it shows some of that calcification of the ligament. I also noticed from the original CT scans that both styloids take a different angle from the skull base.

Edit: I was finally able to get the images uploaded. I also found out that Dr Lydiatt does not do stylodectomy for eagles. Two others in the same office do. Dr Holcomb and Dr. Coughlin. Both of these doctors are on your Drs. page. I am meeting with Dr. Coughlin next week for a consult.

Would very much like to hear anyone’s thoughts on these scans and results. I know we are not doctors but there are some pretty knowledgeable folks on this site.

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Thanks

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@Haggard, Im new to this also so sorry I can’t help but just wanted to say well done for not giving up and I can relate to many of your symptoms, my pain is also on the left side.

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Try again, you should be able to post your images now.

Sharon from ModSupport

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@Haggard,

Your styloids are longer than normal plus they’re both very thick. The fact you also have some calcification of your stylohyoid ligaments is likely also playing a role in your symptoms. Remember, it’s not always the length of a styloid that makes it symptomatic, thickness, angle, how pointed, curved or twisted it is can also play a significant part in causing symptoms. One or more of these features could explain why your symptoms are predominant on the left side. Your right styloid may not be bothering any nerves at the moment. Symptoms can also cross over so until the symptomatic styloid is removed, it may be unclear whether or not the remaining styloid has been a contributor to symptoms.

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Glad that you’ve been able to get confirmation on your CT scans, so frustrating all the wasted time suffering…As @Isaiah_40_31 says, the styloids are longer than ‘average’, and very wide, so I agree with her about that…You might find if you have surgery on the left side, that then the right side ramps up & becomes painful, just a heads up! It might be that having one side removed frees up the ligaments & causes a shift so that the other side starts to irritate nerves, or maybe that the worst side is masking symptoms.
I hope that the injection helps you, although it doesn’t always- some doctors try to use this injection as a diagnostic tool, but if it doesn’t work then that doesn’t mean you don’t have ES.
I hope that the doctors agree to help you, let us know how you get on!

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@Haggard , thank you for sharing. Your account is quite helpful and validating, as I share so many of the same symptoms. (I know we all do). I am sorry you’re dealing with these issues, but so happy you are gaining headway. Please continue to keep us posted.

I anxiously await my appointments with Dr. Hepworth and Allison in early May. My scans are a couple of years old and I understand they may order new imaging once I am seen. I look forward to sharing them on the site.

Be well, friends.

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Those symptoms are among the same ones I’ve had for decades on the right. I am so sorry that you’ve suffered, without adequate answers. It sure seems you are now on the path to get good care and symptom relief!

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