My story and want to visit Dr. Samji

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Long text alert…
Hi guys, this is an account my husband created for me and I have been reading a lot on here. I have bilateral elongated styloids and the symptoms I have been having are mainly on my right side although my styloid on my left side is a bit longer than the right.
I had initially started with neck stiffness in September 2023, which is only 4 months post covid recovery (don’t know if they could be related), primary doctor thought it was ear infection so she prescribed ear drops. Shortly after that my symptoms had not gone better, I then developed facial pain, hearing sensitivity, back neck pain, etc. I had a ER visit at Johns Hopkins where I got a CT scan with contrast, the report showed my left styloid is calcified and pressing on my carotid artery, said nothing about the right side. It was weird because my symptoms were on the right side, so the doctors keep emphasizing on that and pushed me to see another doctor and I just never had a diagnosis. Except for this one vascular surgeon who mentioned about Eagle Syndrome to me for the first time, he looked at my actual scans and told me both sides are calcified, it just says left side on the report because it’s narrowing the left internal carotid artery, from a vascular standpoint, my right side did not show significant findings. But the vascular surgeon doesn’t treat ES, so I started to doubt if it’s Eagle syndrome and seeing ENT doctors. Every doctor that I mentioned ES to told me they don’t think it’s ES because I didn’t have throat pain or difficulty swallowing, which is the most typical clinical symptoms for ES. So I also started thinking if it’s TMJD instead of ES, since they share so many similarities in symptoms.
I had gone to countless doctors and they all tell me it’s either TMJD or something’s wrong with my cervical vetabrae. I have tried acupuncture, PT, massages, a night guard, none of those helped much other than short term relief.
Finally, in December 2023, I saw a oral surgeon for TMJD and was diagnosed with Myofascial Pain Dysfunction, and by this point I had completely gave up on the thought of ES. I did what the oral surgeon told me to, ate soft foods, cold and heat therapy on face, all of that didn’t help much.
Then I went back to China to visit my family in March 2024 and thought maybe I could go to the doctors there and see if there’s anything in my styloid that could be causing all this pain. Within one day, the doctor gave me a diagnosis that it is Elongated Styloid, I did a cone-beam CT and the doctor he diagnosed it with palpation where he touched the styloid with his fingers down my throat. He said from the imaging, the right styloid is pressing on the cervical vetabrae a bit and it could cause the pain that i was experiencing. He recommended Prolotherapy first, and if it doesn’t work in the long run, we seek for surgery.

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The injection helped for about a week, then we went to Japan to travel, and that’s where all the symptoms start to worsen, my neck was feeling very tight inside, especially the styloid area, facial pain was really bad, there is also this spot on the right side of my back of the neck where I get pain A LOT, I don’t know if it’s connected. I also had sore throat twice from March to April, I’m still coughing a little bit from it but the throat discomfort never went away. This is where I feel like I need surgery, so we went back to the US this month.
My husband found this website and we did some digging on the posts, we read a lot of good things about Dr. Samji, but he is in California and we’d have to travel there. We have an appointment with Dr. Bruce Davidson at Georgetown this Thursday, I also want to see if he can order an cone-beam CT for us because we only have the imaging from China, it’s just easier to have one here so we can do tele appointment with Dr. Samji and get his opnions, too.
At this point I just want to feel normal again, I am only 26 and my health was going downhill ever since this has started. I gave up on a lot of things that I used to love doing and my mental health is a mess because of this. I want surgery but at the same time I’m also scared of it, scared if the symptoms are still going to be there even after healing from the surgery, but I just can’t think of anything else that could be the reason for all of this pain.
Any thoughts?

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Hi @dannie,

Welcome to our forum & thank you for sharing your story. I’m glad you’re seeing Dr. Davidson & hopefully he refer you for an updated CT scan. Your styloids are very pointed & definitely longer than normal. They are also pretty steeply angled toward your spine so it’s no wonder they are causing problems. You should consider getting the left side removed first since it’s compressing your left ICA. Carotid compression is more dangerous than IJV compression because it can cause stroke-type symptoms & if left uncared for can sometimes cause a stroke.

I’m sorry for all the pain you’ve suffered but am glad you have a solid diagnosis now. A sore throat isn’t always an ES symptom so the doctors who claimed it is are wrong. Your symptoms are ones we often see w/ an ES diagnosis. The pain in the back of your neck could be from ES. I had pain at the back top of my neck/base of my skull which went away after my styloids were removed.

Dr. Cognetti in Philadelphia is as experienced with ES surgery as Dr. Samji, & I believe, Dr. Cognetti cuts the styloids closer to the skull base so there is less chance of regrowth. He also does telehealth appointments. He is much closer to you than Dr. Samji & has a very good reputation as both a cancer & ES surgeon.

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html

Here are links to two posts in our Newbies Guide section which our moderator @Jules wrote:

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Hi Isaiah,
Thanks so much for the kind words! Interestingly we are moving to California next month so I was looking for doctors over there. Is there any reason that Dr. Samji didn’t remove the whole styloid for you? It’s really hard to decide with surgeon to go to since the reviews vary so much depending on different person and situations.
Thank you for suggesting to get my left side done first! Surprisingly I almost don’t have symptoms on the left side except for the hypersensitive hearing are on both sides which is super weird to me because my left styloid is longer and compressing the carotid artery. But again, the doctor in China who I visited said sometimes it’s more about the angle than length, so maybe my right styloid is pressing a lot of other things if not the arteries.
Do you recommend any doctors that are close to california as well except Dr. Samji?

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Hi, & welcome to the forum!
It’s great that the doctors in China were knowledgeable about ES, as it’s rare many doctors don’t know about it…
My understanding is that Dr Samji will cut the styloids back as far as is safe to do so, he has done many successful surgeries.
Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical has also done quite a few surgeries, but I believe that he doesn’t take insurance, I don’t know what the situation is with you & insurance? All the doctors on the list have done at least one successful surgery to be put on the list; you can always search for mentions of them in past discussions. And it’s certainly worth asking about the carotid compression with any surgeon you speak to, and I agree with @Isaiah_40_31 that if it was me I’d want to get that side removed first.

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Hi Jules! Thanks for responding!
After reading through the discussions, one of the biggest concerns for me right now is if Dr. Samji removes all the styloid or just a part of it because Isaiah mentioned about her styloid regrowth! Does regrowth happen easily? Can it be avoided/affected by anything after the surgery? Those questions scare me, I am someone that overthink A LOT and I want the surgeries to be successful and worth the recovery process.
I understand getting the left side removed first would be more reasonable, but I remember reading about how Dr. Samji doesn’t believe in vascular ES? Although I don’t have many symptoms on the artery compressed side, it makes perfect sense to me that getting that side removed first would be safer.

I also did some research on Dr. Osborne and found that he doesn’t take insurance and a lot of people have been talking about the incision he does. I think I am still going to do a consultation with Dr. Samji and see what his perspectives are on my situation.

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Yes, others have said that Dr Samji isn’t as aware of vascular ES symptoms as some other doctors are (For example Dr Costantino in NY & Dr Hepworth in CO, and Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201. Maybe he might be someobody else to consider?). The styloids do very occasionally regrow, so if they can be cut back as far to the skull base as possible this will help, but not always stop it.

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Thanks Jules, we also saw a doctor on the list near where we are going to move to: Dr. Christopher Yian. I think I am going to give him a call as well to see how they do it.

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@dannie -

Dr. Yen at UC Davis Medical Center in Sacramento has done ES surgery for at least one of our members who had an outstanding outcome. I believe he has a good amount of ES experience.

•Kaicheng Lawrence Yen, MD, UC Davis Health Department of Otolaryngology, 2521 Stockton
Blvd, Suite 5200, Sacramento, CA 95817, 916-734-5400 tel, 916-734-6774 fax, Assistant/Receptionist - Ivy Hamilton, 916-734-1759, Kaicheng Lawrence Yen, M.D., Ph.D. for UC Davis Health

Dr. Damrose at Stanford was Dr. Samji’s mentor:

•Dr. Edward Joseph Damrose, 801 Welch Rd, Palo Alto, CA 1-650-723-5281 Edward J. Damrose, MD, FACS | Stanford Health Care

Dr. Samji does deal with ICA compression because it’s normally not up near the skull base & normally the ICA decompresses w/o help once the pressure from the styloid is removed. Arteries have stronger & thicker walls than veins so a vein that’s been squashed for a long time has a harder time rebounding than an artery. Thus venous decompression surgery is more delicate than arterial decompression & when associated with ES, venous compression is usually up close to the skull base which is where several of the cranial nerves exit so it’s more precision surgery. Dr. Samji won’t do IJV compression because he either feels it’s too dangerous or doesn’t believe it’s a problem, but he will help with your ICA compression.

As I mentioned, I got good results from my surgeries w/ Dr. Samji. It’s just that he didn’t acknowledge I had IJV compression (& I didn’t know I had it until recently) so he didn’t cut my styloid back short enough to help that situation resolve. He has helped many of our members but there are also several who have needed revision surgery later on. Regrowth is unpredictable but the closer the styloid is removed to the skull base, the less likely regrowth is to occur. As @Jules noted, doctors who do this surgery will only cut the styloid(s) back as short as they feel they can safely do it. The major considerations in choosing how short to go are protecting the nerves & vascular tissues that are in the way.

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The primary reason the arteries expand once the compression of the external forces is taken away, is that arterial pressure is ten-fifteen times higher than venous pressure in the neck region. Thickness has little to do with that, except perhaps the opposite, as the thicker the wall is, the harder it is to expand and reshape it.

Physics, @Isaiah_40_31, physics.

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Still makes sense to me that thickness also provides resilience that a thin wall lacks & the extra internal pressure in an artery would help re-shape the artery once pressure is removed. I guess my logic operates under different physical laws than science does. :smirk:

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Keep a thick-walled garden hose compressed for a year or two and then watch it (not) expanding without massive water pressure.

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I consulted with Dr. Osborne about a year ago and he was accepting insurance so you might want to double check with his office.

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Dr. Osborne does accept insurance but on a very limited basis i.e. very few insurance plans from what I understand.

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A quick update guys.
I went to see Dr. Davidson at Georgetown today, explained the following symptoms: (mostly on the right side)
• Tightness and pain in neck around styloid and parotid gland(below ear)
• Sensitive Hearing, ear fullness
• Sore throat and foreign body sensation in throat on the right side
• Pain at right of back of the neck
• Facial pain, Jaw tightness
• Popping when I press on styloid area from neck surface
• Head feels heavy

Dr. Davidson was nice, he did check and go over every symptom that I was having. He first said that he doesn’t think the symptoms about my ears, facial pain and back neck pain is related to Eagle syndrome…? He suggested this chance of benign tumors that grow in the ear canal to explain the hypersensitive hearing and he wants to see my hearing test results which i just now sent to him to see if I need an MRI of my ear canal done… But the tightness in neck is most likely caused by my styloid. It is frustrating because I know ES can cause these symptoms but I guess he is only referring to his clinical and research experience…

He then said if I were to do surgery, it would be hard for him to reach it intraorally because he wasn’t able to feel the styloid through my throat (funny because the doctor I saw in China did, but he went way deeper than Dr. Davidson and he put local anesthesia in my throat to better diagnose), if he were to do it extraorally there would be a lot of nerves around the styloid. I’m just trying to stay positive at this point bc ES symptoms that I’m having is closely connected and affected by emotions.

I think my next step would just be waiting to see what Dr. Davidson has to say and hopefully the consultation with him would make me going to California and seek for a more experienced surgeon smoother. I also do have a backup plan that if all of this is taking months and months to resolve, I will consider going back to China and do the surgery as things are way more efficient and cheaper at a hospital.

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@dannie,

I believe having a consult w/ Dr. Samji is a good idea. I feel a bit bad for discouraging you because he really helped me a lot. I’m just feeling frustrated by my current situation which may be the fault of my own body & nothing he did or didn’t do. He has a lot of ES experience having done more than 300 surgeries so he would at least be able to confirm your diagnosis. One thing he does which many other doctors don’t do is to use surgical clips. These are applied to a blood vessel during surgery to help reduce the amount of bleeding during the surgery. The clip is left in place after surgery. I have had no problem with mine & didn’t know they were there until I had an CT scan last year, but some people claim they can feel them & seek to have them removed later. If you think the clips would be a problem for you, you can ask him about them & whether he could do surgery without using them.

I also disagree w/ Dr. Davidson’s assessment that your ear, facial, & back of neck pain is not being caused by ES. I can’t remember if I’ve listed the cranial nerves that can be affected by ES for you but they are the facial, trigeminal, glossopharyngeal, hypoglossal, vagus, spinal accessory, & possibly the vestibulocochlear. There is a video series called Two Minute Neuroscience on Youtube w/ a 2 min. video for each cranial nerve. It’s worth watching them.

Here’s the link for the trigeminal nerve to get you started. I also apologize if I’ve sent this before. Some of the information I post here so often, I forget whom I send it to.

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Thank you Isaiah, I appreciate your help! I think so too, the issue with Dr. Davidson today I could see right away was that he knows the whole eagle syndrome and how it works but he is lack of clinical experience, meaning that he hasn’t seen a lot of complicated symptoms that are caused by ES.

I will keep updating when I get to the next step!

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