New ES Member - Story & Thank You w/ Pics of my CT Scan

General
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Early August I discovered a bony lump in front of my Rt tonsil [still have them] in the Palatoglossal Arch. Emailed my primary care Dr and she told me to gargle for a few days and let her know if I still have it. I wrote back and said still there about the length of the tip of my pinky. She saw me a week later. She let me put her finger on it and booked me an appointment that day with ENT.

The ENT touched it, jumped up and down with excitement, and said I think I know what you have, I’ll be right back. He came back with a model of a skull which had ~1.cm SP on it. He said this is what the Styloid Process should look like - I think yours have grown. Can I show you a picture? Sure …he showed me a picture of a person with horn-like growth on both sides of her [?] mouth pushed through her P Arch by multiple centimeters.He set me up with a CT scan to verify the diagnosis. Neither he nor my PCP took an verbal history from me!

I had my CT and received an email from him stating: “Confirmed Eagle’s Syndrome. I don’t recommend surgery.” That is it -2 sentences. So I immediately wrote back- can I meet with you to discuss this and the next steps…I have lots of questions. An email bounced back to me that he was out of the office for a week. So I contacted my PCP to ask what my next step should be and she said “why am I not just be happy it is not cancer.”
And let’s see what the ENT Dr. says when he returns. The ENT answered my email that he could meet with me, let’s meet in a month to answer my questions. I said I didn’t want to wait a month, can he see me sooner? He told me to call the office to book an appointment.

I began researching this new diagnosis and found a government website:
https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome

from this website they recommended learning more by going to
http://forum.livingwitheagle.org/

Where I read about many [1,400 members from around the globe] wonderfully caring people and their details about symptoms, diagnosis, and treatments with recovery experiences. From this website I also found out about a free CT 3D Slicer program provided for free by our government. I used the CD I received from member services to create my own 3D of my CT and found that I could clearly measure my SP length of both SP [which the Radiologist couldn’t do on 2 requests] Rt. ~ 4.2 cm, Lft~ 5.5 cm. Both being palpable from my mouth and the left being palpable under my chin by me [none of the doctors even attempted this]. If it wasn’t for my own research, to validate how I feel and my symptoms not being in my head or because I have menopause- I may have stroked out. I feel that I clearly have compression of the carotid artery [see symptom list below].

When I called, they told me the Dr. was out for 6 weeks and wanted me only to see him. I said I didn’t want to wait for him to return and since I only met him for 10 minutes I was willing to talk to another ENT. This may have been my downfall… the new ENT came in very gruffly and was more concerned that I didn’t bite her than with me. She wouldn’t let me help her locate it. She touched it on the side, not the tip and then told me she didn’t think the pain / lump feeling I had during swallowing was due to the SP that I should change my diet and she would send me info on the new diet and speech therapy. Once again there was not any oral history taken, nor further exam. She told me I was there to hear her opinion, not give mine, since she was the doctor. At this point I was on the verge of tears since she along with many other doctors have been dismissive of my symptoms or not heard them at all. I told her I do not feel it is GERD or Vocal Nodules [which I have had both in the past]. That I would be willing to follow these to paths, but that I had all sorts of other symptoms which she has not heard about and I had on a pre-typed list which I brought. When I began to share with her some of my symptoms: one-sided headaches and and electroshock nerve pain at base of my skull she fell silent and started typing. One good thing that came of this appointment was discovered my second SP poking into my right lower P. Arch down next to my jaw and she agreed to send me for an MRI with dye. Otherwise, this appointment was very disturbing, as the doctor seemed to have a pre-decided diagnosis and came across as irritated throughout the appoint from the moment she walked in.

I shared with her that I also was suddenly “Falling asleep” mid-sentence or typing so I requested that since the CT was done in Neutral head position could she ask for the MRI to be in Flexed and Rotated position. She said that she could not request that and the MRI tech will know what to do. When I went in to the MRI check in I asked for the MRI to be done in flex position and explained why - they told me that I should explain this to the tech. So when I went into the trailer I asked for the MRI to be done in flexed position and had images from printed out to show her, but the technician said we only do it in neutral position.

The report came back quickly, and the ENT wrote to me “Good News you are fine.” When I read the enclosed report from the Radiologist it indicated I appeared to have a slight flattening on my Internal Carotid Artery [with my head in Neutral position]. At this point I contacted members services to ask what to do about the fact that I didn’t feel like I was getting the care I needed. The woman at members services per my request looked up the care for Eagle’s Syndrome and found that I would have to referred to a Neurology Specialist by my ENT doctor as my next step. So I wrote back to the ENT and included this quote from the report and requested her to send me on to Neurology. She did so.

Both my primary Care and my ENT Dr’s have indicated in writing to me that I just have abnormal bone growth and that I should just be reassured [and happy I don’t have cancer]. This feels very degrading to me and very dismissal of my symptoms. I have included a list of the symptoms I have and have shared with Dr’s for several years now and have had them write them off as either stress or menopause related [if I was younger I think I would have received better health care]:
• Lump in “Throat” & Sore Throat ‘Strep-like feeling’
• Stiff neck
• Electroshock sensation back of skull/neck region
• Intensive Headaches on 1 side of my head from neck/skull to behind eye
• :rage:Feeling over heat-stroke [over heated head ] from some exercises which lasts more than an hour even after running my head under a cold shower for 20+ minutes. Face is bright red.
• Periodic, prickly feeling in my head [like skin with a fever]
• Pressure behind eyes [especially in AM with blurry vision [double vision?]]
• Periodic Runny Nose/Eyes/throat when eating …feels like sudden allergies
• Rt ear Tinnitus [especially]. Full feeling [like I need to clear my ears] behind left mostly
• Holding up my head with my hands frequently [last several months]
• Choking on H20 / saliva lately
• Exhaustion & Brain Fog
• Spontaneously “falling asleep” [Wide Awake….Deep Asleep] when head is flexed down grading papers, reading laptop, typing, looking up from couch [upward rotation]
• Head turning off…Feels like Atlas is colliding with SP Bone
• Pressure/Swollen under jaw feeling…both sides…like swollen glands when sick

:slight_smile: I want to personally thank all the members of Living with Eagle for sharing their stories and symptoms, treatments, and concerns because they have helped me so much with pushing for the care I deserve and having a clearer picture about all my options for treatment. I especially want to thank @SnappleofDiscord for sharing the 3D CT Slicer & How to Information…I am including pictures of 3 views I made:

I know this story was very long and detailed, but I hope others will find it helpful. I will continue to update it as more unfolds.

Seamom

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Here is the 3D CT front facing 3D CT pic that didn’t upload above. Notice the red arrows. Happy Halloween!

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Thanks for sharing your story, and glad that you’ve found the site helpful.
I really hope that you can keep pushing and get somewhere. I don’t know if it would help, but maybe try printing off some of the research of cases where the SPs have been found to be compressing the carotid arteries and caused damage and show your primary care doctor- your docs seem to be taking it quite casually and not addressing your concerns about some of your symptoms. (The first doc I saw told me that the SPs can’t compress the blood vessels in the neck- and luckily through this site I found out about a very experienced doctor not too far from me and was able to see him. The CT with contrast he ordered showed compression of the jugular veins both sides!)
Otherwise is it possible for you to try one of the doctors on the list- send copies of your scans to Dr Samji for example?

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Seamom, I agree - that was degrading and dismissive. Keep on pushing. I personally didn’t get any help from neurologists, so don’t be surprised if that doesn’t get you anywhere. I agree with Jules - try to print out some studies and information to support your case. If at all possible, try to get to an ENT who knows about Eagles. Is there any way you can get to that doctor that Isaiah mentioned? I know it’s super frustrating - but you’re doing exactly the right thing.

Those are scary looking styloids.

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Hi Seamom!
I am so sorry you have had to go through all of that. This is a great place to feel validated, know that you are not crazy and get the information you need. I agree with heidemt look up the doctor list and try to find a Surgeon near you who is familiar with ES. I can’t tell you how many doctor’s dismissed my symptoms and I too had to self diagnose myself. I actually had to go back to the 4th ENT I saw and make him look at my CT scan for ES. We should not have to do things like this.
I also had very similar symptoms as you. I have bilateral ES also and my left SP was growing into my tonsil fossa and compressing my carotid and jugular vein.
Find a doctor who understands ES and who is going to help you. Best of luck to you! :slight_smile:

Krista

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@Krista3,
Thank you for your kind words and support. I am working within my HMO to get $ support to go outside of the network, which I was just told I could do…if they do not have a surgeon to do it and if more tests show it is compressing a vascular path.

Moving forward slowly, learning a lot, and appreciating everyone’s support and info to guide me :wink:

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Seamom, why do they need tests to confirm it’s compressing a vascular path?

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@heidemt,
I had a good meeting with a neurologist last week. She started by saying that Eagle’s Syndrome is a rare disease and that she didn’t know anything about, but was starting to research it (refreshing). When I shared my typed list of symptoms which have been bothering me for year, she asked if I printed them from online? I said no, I typed them as they came to my mind. She said that they matched what she had researched. Then she looked into my folder and saw my pictures of my 3D CT and asked where I got them. I told her I made them from my CD. When she looked at them she asked to keep them to share with her team. She told me that she wanted to do a better scan–CT angio to get a better view of possible compression of my carotid. She also wants to do a Doppler Ultrasound. She said she would talk with a radiologist to see if she can get these done with my head forward and turned. She is asking around the other Neuro/Vascular Dr.s within our HMO to find out if any have experience with Eagle’s especially surgery, in case I need it. I told her I would only allow a surgeon who has already done an Eagle’s surgery successfully on someone else before they perform it on me! She said if the HMO can’t provide me with what I need, and that I do need surgery then I can go to the Surgeon in San Jose. She also said that the surgery is risky and I shouldn’t rush into it unless we know that my vascular blood flow is being compromised. Then it would be worth the risk, since strokes or loss of blood flow to the brain is very serious concern.

Long answer to a short question - but I wanted to share the news of my care heading into a better direction.

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Your doc sounds great seamom! Hope that you can get insurance sorted.

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That’s great you had a good meeting. Sounds like things are going well.

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Just heard back via email from my doctor. She is organizing a CT Angio with head in various angles,; didn’t mention the Doppler. She said that the HMO has a Dr with experience in this area and that she is referring me to him, but he is not doing surgery for a couple of months…hummmm

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Had my CT Angio and Ultrasound Doppler today. CTA shows slight compression as before, but claims there is not a mass of obstruction, so I don’t understand why I suddenly fall asleep when typing, grading, or even talking 2-5 times a week??? Looking forward to Ultrasound results. Frustrating [but at least this Dr. is taking it seriously].

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Maybe the artery is compressed by the styloid when your head is in a certain position, giving you more symptoms then? And perhaps that it stays partly compressed even when the styloid moves away as you move your head? Sometimes the blood vessels don’t spring back completely even after surgery.

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Received my Ultrasound results today. The US showed a 42cm/s flow rate when my neck was flexed and a 100cm/s flow when my neck was in neutral on the left side. Unfortunately, they didn’t take my flow on the right side when flexed [which is the side the Radiology report said was the only side showing any compression from the SP] I’ve been scheduled to meet with a surgeon next week. Then I plan to see Dr. Samjii for a second opinion and hope to press my HMO to cover it. I can not afford to get a surgery without my insurance covering it. I am also very scared about the recovery with my ability to teach soon after. I am the only income for my family!

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Sea mom, I’ve had 5 Eagles surgeries. I was able to go back to work easily after 2 weeks when I had my 2 surgeries with dr Samji.

I was able to go back fairly easily at 2 weeks after 2 of the other surgeries (one of those was by a doctor who had never done an Eagles surgery before, but he didn’t take enough of the styloid out and I ended up eventually having to get a revision surgery).

I had one other Eagles surgery with another doctor who had never done the surgery before either. That was on my vascular side and he cured me, but was pretty rough on my nerves and it took me a couple months to back to work after that one.

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Thanks for the insight. I’m getting worried and trying to turn it into a planning strategy instead! I have an appointment with an HMO Surgeon on Thursday. My husband is coming with me to this appointment for support.

I have a list of question typed up and a file of Scans, CT 3D pics I made and research on Vascular Eagles info. My first question is 1) How many Eagle /Styloid Process surgeries have you done, and at what success rate? 2) Have you ever performed one with the ICA compression involved? 3) If you were to do the surgery, would it involve a full removal of both SP?..any other major questions that I am missing?

I will be calling Dr Samji on Monday and trying to start that ball rolling. I have also begun to prepare a letter to push my HMO to refer me to Dr Samji [outside coverage referral request].

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You could ask whether they do the surgery intra-oral or externally- there’s pros and cons for each method, there’s info about the advantages of each method in the Newbies section. You could also ask about complications of surgery- any good surgeon will let you know about the risks as well so that you can make an informed choice- if they say there’s no risks then they might be a bit too over confident! We’ve also had a couple of discussions on here about the need for stenting compressed blood vessels- if you want to think that far ahead you might ask about that. (The discussions are searchable so you could have a look for those discussions if you have time) Again, there’s pros and cons/ risks with that surgery.
Also (sorry, I can’t remember if you have calcified ligaments as well as elongated SPs) ask about calcification of the ligaments and if they remove those as well- not all surgeons do and if they are calcified, they can still cause problems.
Hope you get on okay- keep us posted!

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Yes, like Jules said, ask whether he does intraoral or extraoral surgery. The doctors with the most experience seem to do extraoral, but to be fair, lots of people have had fine results with intraoral as well. Usually with external surgeries the doctors are able to get more of the styloid out.

And also like Jules said, ask about the ligaments.

In your third question you mentioned both SPs - were you asking about doing both sides at the same time (in addition to asking about whether they remove all the SP)? It’s very unusual to do both sides at once because of potential swelling problems but that’s something to discuss as well. I’m sorry I’m on my phone so it’s not easy to look back, and I don’t remember if you have issues on both sides or not.

Also, I wanted to add that I think it’s much better to remove the whole SP, but sometimes it’s not possible for various reasons. They should try to get out as much as possible, but people seem to do pretty well if it’s taken down to 1-2 mm. So don’t necessarily discount him if he says something like that.

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Thank you all for your help and support! My right SP is growing into my throat in front of my tonsil [how I was diagnosed with Eagles] and I Tinnitus on that side, and the CTA should slight compression to my ICA, but they only did Doppler Ultrasound on my left and found I dropped from 100cm/s flow rate to 42cm/s with my neck flexed. I am not sure what normal flow rate is [Does anyone on here know?] but I received an email from my neurologist suggesting I keep my head up – literally [but I like the double meaning]…so I was hoping to have both SP done at the same time…but I didn’t know there was a risk with that. Thanks for the help with the questions.

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I have an appointment to see my HMO surgeon Thursday [2 days], and scheduled an appointment with Dr Samji on 12/9…soonest he could fit me in. My big dilemma is that I have had a CT with contrast and a CT Angio this month but Dr Samji ONLY takes appointments with people who already have a CT **without contrast.**strong text****I do not want more radiation in my head nor to pay out of pocket for another CT, so I am going to write to his assistant and include my 3D pics and give details of how both SP are palpable in mouth. Wish me luck on getting him to accept me and my HMO being willing to refer me!.