Introducing myself :) Confirmed CT on Friday

Hi everyone! Im new and just wanted to take a minute to introduce myself and say hello and say how glad I am I found this forum!

I have had a lot of testing this spring, MRI on neck, brain, inner ears, an endoscopy, diagnostic facet joint blocks in my cervical spine, PT, so many things to get to the bottom of my symptoms and finally I asked my ENT doctor for a referral for a ct scan to check for Eagle’s. Yesterday I went for the scan and I was right! I feel so validated to finally see it written in the report and confirming why i have so many symptoms.

I have had swallowing issues, an increase in headaches and migraines, a burning tongue sensation since last August, and a feeling of a dry patch and sometimes stabbing in my throat, neck pain, ear pain, and tinnitus for longer. The tinnitus is mostly in my right ear and I do get pulsatile tinnitus when I lay down. I do think some of the headaches are related to ongoing cervical spine issues but the nerve pain in my face and pain going into my ears never made sense until i came across Eagles.

The ct scan showed ossified 4cm styloid process on the right and 5.1 on the left.

As for things not related to Eagle’s, I’m a single mom, I live with my three kids and my grandmother in MA. Kids are 15, 10, and 9. We lived in SC for a few years and just moved back to MA in December, and we homeschool. I’m really looking forward to getting in with one of the doctors in the area to get this taken care of. The pain has really taken over my life and I know it wont address everything I deal with but it is so exciting to me to finally have a concrete answer.
Hope you all are having a great day :slight_smile:

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Hi Katie & welcome to the forum!
Well done for raising ES with the docs & getting that confirmed! They are pretty long styloids…I admire you for homeschooling & looking after your grandmother with ES pain & symptoms, you must be pretty tough!
You might have read up on helpful tips in the discussions or in the Newbies Guide Section, but if not you might find that sleeping semi upright may help, especially as you get pulsatile tinnitus when you lay down. (It sometimes happens if the jugular veins are a bit compressed & that can cause headaches, so sleeping semi upright can help with that) There are medications to help with the nerve pain if you’ve not tried those- like amitriptyline, gabapentin, carbamazine etc. I take Amitriptyline; it’s really helped, but they can take a little while to work.
Hope that you find the site helpful & good that you’ve advocated for yourself to get this diagnosis!

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Hi Jules! Thank you!! I have been practically living on ibuprofen and excedrin to get through. I have been on an antidepressant for 2 years and i really think that doctors seeing that too has made them finally acknowledge that my symptoms are from more than “stress”. My pcp recently switched me to effexor to see if it would help as a daily preventative. It hasnt helped but its only been a month so I’m curious to see what he says now that i have this confirmed! Hopefully i’ll be prescribed something actually helpful.
I probably would benefit from changing how I sleep. I’ll definitely try it, thank you. Im so glad you are all here!

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Katie, welcome to the forum! You won’t find a better class of people, support and resources :purple_heart:

I think it’s amazing that you’ve been able to put all the steps in order and uncover a diagnosis! What a great first step! I’m curious when your symptoms began?

Your styloids are impressive! And as I’m a testament to, a CT takes only slices of images so odds are in favor that your SP’s are longer! I just had my left removed on 5/4 and while my measures came back at 3.5cm, it was actually 4cm!

I’m thrilled that your journey to recovery is beginning and your optimism sure shines brightly!

Welcome again!
Tracy

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Hey Tracy! Whew- my symptoms? Here comes a novel, lol.
I have had headaches and migraines for years and issues with my neck, along with other chronic joint and back pain. It was constantly brushed off as me being a “stressed out mom”. The headaches got a little more frequent and intense with facial/nerve pain about three yrs ago but then since about a year ago maybe 1.5 yrs its become almost daily, frequent pain in the right side, dizziness and vertigo, the pain in my face, in my throat like a patch that feels dry in the back of my throat always and occasionally a stabbing pain. Tinnitus in my right ear 24/7. Intermittent in my left ear. Lots of ear pain and radiating from my jaw. Swallowing trouble. Pulsatile tinnitus on either side when i lay down. All the symptoms get more intense over a few days then i have a “migraine” then the cycle starts again. If I barely press my head back the tinnitus is intense and it causes pain in my right ear, same for if I tuck my chin down. If I tip my head to the left like, ear to shoulder, it triggers left sided tinnitus. I’m sure I have forgotten something.
Its pretty interesting about the lengths maybe being longer once theyre actually measured after removal. The human body is wild.

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Wow, you have quite a mixed bag! And it’s awful that it takes folks on average this long to get diagnosed :cry:

I hope that this is finally the beginning of the end of the pain and wondering!

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Haha yeahhhh its a lot. I have an appt with an ENT from Mass Eye & Ear Wednesday morning- i’ll update everyone with what he says.

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I’m hoping for the best with your appt, Katie! Don’t be discouraged though if they pass it off as stress or some other problem. You have the list of experienced docs from our forum to refer to for a second opinion. :heart:

Your symptoms sound identical to mine! Welcome to the forum. I’m so glad you found us!

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Thank you! Were you able to find a doctor who helped?? I saw an ENT yesterday who’s supposedly some top surgeon at Mass Eye and Ear and he was terrible. But I’m seeing a different doctor tomorrow and I’m keeping my hopes up for a good appointment. (Yesterday’s doctor is not on the list of suggested doctors for Massachusetts but tomorrow’s is)

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Thank you! He was terrible lol. Said things like “i dont know why they sent you to me”, “try physical therapy”, he asked me my symptoms and when i said tinnitus he asked if its bilateral or in one ear and I started to explain its all the time in my right ear and intermittent in the left and he put his hand up like he was brushing off a server in a restaurant with “I dont do tinnitus”. Then WHY ASK. Haha.
Plus after he pressed on the tonsillar fossa, which I said does hurt while trying not to gag, he said “you’re not showing me you’re in enough pain. This isnt Eagle’s. I really cant help you.” Pressing there left me in pain ALL DAY.
So… yeah. But as much as yesterday was super discouraging I went home and had a thirty minute pity party and then got on the phone and made an appointment to see Dr Anderson who’s on the list of suggested doctors so I’m keeping my hopes up he’ll be helpful.

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Sorry you had to go through that. If it’s any consolation, when do finally meet a Dr that listens and cares it feels amazing and restores your faith in them.

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Thanks elijah. I’m focusing on tomorrow and hoping it will go well! Yesterday I had a feeling it would go like that which probably left me feeling nervous and unprepared. I’m sure tomorrow’s appointment will be better. :slight_smile:

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I hope that after that frustrating appt tomorrow’s goes better! Let us know how you get on :crossed_fingers:

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Waiting with baited breath to hear how your appt goes today!! I hope so much better!!

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I just read your story I sure hope the appointment with Dr Anderson went better, waiting to hear what he said, good luck

Thanks… he was much nicer but also disagrees the styloids are causing my pain and insisted I have trigeminal neuralgia. I was in the midst of a very bad headache/pain day when he saw me and was super miserable, so maybe he’s right idk. He said he’d guess 10% Eagle’s 90% neuralgia. I have a video consult with neuro this Thursday… he said if neuro says he’s wrong come back.
I’m so tired. It’s been a hard weekend.

@Katie_mcp ~ Trigeminal neuralgia is a very frequent symptom of ES. Since you have elongated styloids & TN, in my mind, there’s a 99% chance they’re related. Many, many of our members have/had TN as one of their ES symptoms. Having the level of pain that can cause becomes debilitating & can wear one out which explains why you feel like you do. I honestly believe that having your styloid(s) removed would make a huge difference.

If you are able to see Dr. Aninno for a consult, I think you might get a different opinion. He’s helped more of our members than any other doctor in your state please do let us know how your neuro appt turns out. Please bear in mind that most neurologists don’t know much, if anything, about ES.

The picture below shows where the branches of the trigeminal nerve are & thus where pain can be experienced (though it can radiate from the branches, also). This image doesn’t show it but there are also “twigs” (not big enough to be called branches) that run into the inner ear & can cause ear pain. Above the picture is a link to a brief research paper which supports what I’ve told you:

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Thanks Isaiah. I’ll request a referral to Aninno today. I really appreciate your help.

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I’ve had TN which I believe was caused by my styloids- before surgery I was getting tingling & numbness as well as the pain; that has improved, & the pain although not gone is better than it was. I think it’s possible that the styloids could damage the nerve, so it doesn’t recover completely afterwards, which could explain why I still have some pain, but for me the symptoms were worsening, so don’t know where I’d be now if I’d not had surgery!

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