Questions while waiting for appointment

General
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Hi all. I had a tonsillectomy in 1999, and began to experience neck pain around 2004 especially after looking down at something for extended periods of time. After MRIs, etc., no one could ever find what would be causing this. In 2015 my dentist noticed elongated styloids on a panoramic x-ray and told me about ES. I was in shock that my dentist had found it and that the common symptoms matched what I had been feeling for years.

I found a nearby ENT at the time that is on this site’s list and received a diagnosis, but in between then and my surgery date some strange events occurred and he ended up losing his license to practice. I want to a new ENT that could also do the surgury and he elected to give me a shot of lidocaine and said surgery should be a last resort. The lidocaine did seem to give me some relief and the discomfort has always subsided after taking a couple of Advils (typically only needed when it is really bad once a month or so) - it has been manageable.

Fast forward to now, a few months ago I noticed a bump under my jawline and my dermatologist identified it as a common skin cyst that just needed to be excised. He made a small incision and removed it, but during surgery he mentioned “something is in there”. I was perplexed by this statement and he did not elaborate, but in the coming days I began wondering if it could be my styloid?

About 1 week after surgical removal of the cyst, I began feeling a sensation like something was in my throat when I would swallow. I figured this was due to inflammation in the area related to the minor procedure. A few days later I began getting neck pain like I have gotten intermittently over the years when my head isn’t held completely straight. The only problem is that Advil won’t complete help with the pain anymore, and now it is starting to affect my work as I am on the computer all day and it seems to get really agitated.

Now when I try to go to sleep at night I can feel something in there (feels like styloid), and depending on which side I sleep on I can feel it poking near where the cyst was removed. I also keep feeling the need to open my jaw and I hear a popping/cracking sound from both sides. It feels like there is a foreign body from my temple to my jawline and the pain radiates from my neck to behind my eyes. I also have intermittent tingling in my face.

Sorry for the long and rambling backstory, but I was hoping you all might be able to help with a few questions. I have to wait another month before I have an appointment with my ENT to discuss my options and hopefully get a new CT scan since the last one was 5 years ago.

1.) Would it be at all helpful for me to send the 5 year old CT scan to a more experienced doctor such as Dr. Samji or Dr. Cognetti to get a phone consult or should I wait until I get up to date imaging?

2.) Is it possible for the styloid to elongate to the point that it is poking on the skin on the neck and has nowhere else to go, causing it to push back up and irritate nerves more?

3.) Is my CT scan I included with or without contrast? How come Dr. Sanji prefers no contrast, wouldn’t that help identify arteries, etc.?

ct scan
ct scan919×719 218 KB

panoramic xray
panoramic xray1482×783 330 KB

(CLICK TO EXPAND AND VIEW FULL PANORAMIC)

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I cant speak for Dr. Cognetti but although Dr. Samji like CTs without contrast, I suggest you send him the disk of old scan. It clearly shows elongated stylus and they appear pretty long to me. He may not even require a an updated CT but by sending him the old one, you can get reviewed and get his opinion via telehealth or phone consult usually within a 2-3 week period. The cost is $300 and most insurances cover it, if he is on your plan. Dr. Samji doesnt generally care about seeing the arteries,etc. If he sees the need for surgery, the surgery itself will decompress any inpingments.

Ive had many of the same symptoms as you and radiated to eye with it twitching. I also have been told I have TMJ. I think the stuff going to eye is the trigeminal nerve irritations. Lidocaine is only temporary. Prior to surgery, I had a combo of injections of steroids, botox and nerve block for pain.

Interesting about the cyst. when my styloid removed, they found a mass of lympnodes which were removed. Im assuming the doc sent this mass to pathology? Id get a copy of those results. Good luck.

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many of us have gotten a wedge pillow to sleep. I too got the U-shaped pillow too and the combo has seemed to stabilize my neck and jaw so I dont wake up in pain. Ive tried alot of pillows over the years and this one seems to work for me. I found this wedge pillow although expensive made my “medcline” about $240 and includes nice bodypillow. If you are going to have surgery, you want a wedge pillow as the docs want you 30 degrees upright for awhile after surgery.

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Oh my!! They are pretty long, & looks like there’s calcification of the ligaments up from the hyoid bone, if this is from 5 years ago goodness knows what they look like now! The whole stylo-hyoid ligament can calcify along it’s entire length, making the styloid join to the hyoid bone- looks like that has happened on the right side. (The panoramic x-ray doesn’t show it as well, but shows a slightly elongated styloid process.) This would explain the popping & cracking you experience.
So it’s worth sending this older CT to Dr Samji, & possibly Dr Cognetti, & not waiting for a new CT . The only concern with Dr Cognetti is that one member recently had surgery with him, & he didn’t remove the calcified ligaments, & apparently told her that he doesn’t remove them. As yours are clearly calcified, if you were to get Dr Cognetti’s opinion, you would net to make sure you clarify this- if you just had the styloid process shortened & the calcified ligament left in, more than likely you would have symptoms still.
The CT that you’ve put on here isn’t with contrast; if you’re thinking of sending one to DR Samji then he does prefer without. I think he does surgery based on symptoms, regardless of whether it’s vascular ES or not. Some people have rarely had reactions to the dye used for a contrast CT, so maybe better to not have one unless necessary & a doctor wants it?
Some members have been able to feel the styloid process through their skin in the jaw area; it does depend on the angle it’s growing. Others have been able to feel it inside the mouth in the tonsil area.
If you wanted another opinion nearer to where you are, Dr Mark DeLacure in NY has also done surgeries on several members:
Dr Mark deLacure, NYU, New York City (has done surgery on 2 or 3 members) https://nyulangone.org/doctors/1326049453/mark-d-delacure
I hope this helps!

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