New Eagles Diagnosis in Detroit

General
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Hi there! So glad that I have found this site. Super helpful, and much appreciated.
I was recently diagnosed with Eagle Syndrome by my dentist via xray. And I am so thankful I was! I have been dealing with multiple issues for at least 5-10 years. Some have been attempted to be treated by my doctor, diagnostics and ultrasounds done, but never truly helping. And many symptoms I never even mentioned because I always thought they would go away.

My most recent symptom is extreme radiating pain from my neck to my shoulder and arm. I had thought about going to the doctor for it, but kept thinking it would go away. Months later, I received the diagnosis from the dentist - bilateral Eagle syndrome, calcification of styloid ligament.

I was able to do a lot of research through scholarly articles and this site before I went to see my GP. She was very gracious, but admitted she didn’t know much about Eagle - that they mention it in medical school, but that it was so long ago and she had never encountered it. Thankfully she did some homework before my appointment to know what symptoms to check for. She was upfront about talking to a radiologist to confirm what type of CT exactly to ask for. I am scheduled for that on Tuesday.

And, because of everyone’s experiences on this site, and the list of doctors, I have been able to schedule two appointments (one for a second opinion) with Dr. Hinni at Mayo Clinic in Phoenix and Dr. Bove at Northwestern in Chicago (no specialists that I’d want to work with in the Detroit area). My Mayo appointment is pretty quick - in less than a month, and Northwestern is at the end of January. Hopeful that I will have two good options to choose from for potential surgery.

I’ve had neck bulging and pain on and off for many many years, the currently severe neck/shoulder/arm pain, tingling in my arms, pain near my tonsils, difficulty swallowing, pressure in my head and at the base of my neck, severe brain fog, ocular and regular migraines, thunderclap headache, constant regular headaches, pressure behind my eyes, blurred vision/trouble focusing, occasional jaw and ear pain, tinnitus, sensitive hearing, positional vertigo, regular vertigo, car sickness (now when I drive) - almost constant dizziness, occasional balance issues, trouble sleeping, flushing head when sleeping, hoarse voice… the list could probably go on.

I’ve also been diagnosed with fibromyalgia (sounds like it is related) and have hypothyroid. Some symptoms may be attributed to those. But if I can get relief from a few of those symptoms I will be happy.

Wish me luck on this journey!

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Hi melisyte!

Welcome to this AWESOME forum! We are here for you. Thank you for your thorough email. It’s always easier to offer encouragement when we have a good picture of a person’s history & symptoms.

Good for you for doing research on your own. There are many articles available via this forum as well. Search in the Newbies’ Guide.

It seems that many ES symptoms end up being the result of irritated cranial nerves or partially compressed vascular tissues. Your arm/shoulder pain is likely related to an irritated accessory nerve, for example. Swallowing, throat pain, vertigo, hoarseness… can be glossopharyngeal &/or vagus nerves. These & other cranial nerves are among those often irritated by elongated styloids or calcified stylohyoid ligaments. Intermittent compression of the carotid artery(ies) &/or jugular vein can also create vertigo, migraines & brain fog among other things. By intermittent, I mean that these are not always compressed but only when your head is in certain positions in which your calcified ligaments make contact w/ them & thus may cause onset of dizziness, brain fog, flushing head, etc.

I suggest you try sleeping w/ your head elevated to see if that helps & check out different positions of your head i.e. turned left or right, tilted up, down or obliquely to see if you notice (a) particular position(s) aggravate(s) your symptoms. If so, try to avoid those.

Fibromyalgia & ES do have some symptoms in common. You may find that after you have ES surgery that a chunk of your fibromyalgia symptoms disappear w/ your calcified ligaments.

I’m really glad you’ve been proactive in finding the ES Doctors’ List & getting yourself some appointments. Good work! Please keep us up to date about what you learn from these 2 doctors.

:blush:

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Three cheers for two opinions! That’s what got me to my surgical date less than a month away now! You’re on your way! It’s YOUR choice who you go with. This is important!

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Well done you for doing research yourself & getting these appts organised! Unfortunately having symptoms for years is not unusual, but now you’re on your way to getting treatment, that’s great! Good luck & let us know how you get on :slight_smile:

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Thanks Isaiah! I have to say, I’ve read many of your comments on others posts and you are very knowledgable. Thanks for the advice on which nerves could be affected. I’ll do some more digging so that I am prepared for my appointments. Helps for me to understand things before seeing a doctor so that I can have a better conversation and questions prepared.

I’ve tried sleeping elevated tilted up - this helps with the neck pain, but I seem to get dizzy/feel like I’m going to have a nose bleed. So it is a trade off - pain in the neck, or feeling like there is something going on with my carotid or jugular.

Not sure if others have this, but I find my pain is a little bit less upon waking, but then when I am upright, it just continues to get worse throughout the day. No positions help.

Again - thanks again for being here!

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I think if it was the jugular vein affected sleeping part upright would help, as compressed jugular veins can increase the pressure in your head, laying flatter keeps the pressure higher. From personal experience!!

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Shalom melisyte, Welcome to this blog. I suffered with ES for 17 years. Never had a diagnosis until I moved from Houston, TX. to Oklahoma City, OK. After much prayer, I went to a university based physician at OU Physicians. University of Oklahoma, Dr. Greg Krempl was the one who finally diagnosed me back in 2004 after going to so many doctors in Houston.

Dr. Krempl is on the list of physicians who know about ES on this Blog’s list of doctors. He referred me to Dr. J Runkle in Norman, OK and it is he who did my surgery. Now that you have been properly diagnosed, you need to hunker down and have the surgery to cut out all of the calcified ligaments. That is the only way I had closure with the pain.

Was it a hard surgery??? You bet, it was! I thought I had made a mistake but, after sleeping upright for about 4 months, my salivary glands going crazy, I survived it. For me it was a long recovery because I am a diabetic and we heal much slower than most. I will tell you, I was so scared of having more pain but, once I got through it, it was the best decision I made. I was literally dying with poking, scrapping in my throat.

Once I had the surgery, I was able to eat, swallow, and just have a better quality of life. In January, I will go to see Dr. Krempl for the first time since 2004. The reason for the visit is because, I want to thank him for saving my life and also to have him check to make sure it never calcifies again. My insurance finally put OU into being covered. Unfortunately, sweet Dr. Runkle passed back in 2012.

I believe that physicians attached to a teaching University are the best physicians to diagnose you because they do research, there is much money invested in new research. I had been a devoted hospital system in Houston and when I first got to OKC and they would not refer me to physicians outside of their systems. I finally cried out to my gynecologist’s wife and she spoke to my hero, Dr. Dean Carpenter of Mercy Hospital in OKC, and HE is the one who referred me to OU Medical. I went to the OU Otorhinolaryngology Clinic. A gynecologist!!! So, OU took the referral and it is there that I finally got diagnosed, had the surgery, and my life was saved.

I hope you do the surgery. There is a huge risk but, living in this pain is not life at all.

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Thanks Hadassa. I’m so lucky that I don’t need referrals with my insurance and can see any doctor of my choosing. Hopeful that one of the two I am seeing will do what I’m looking for and I feel confident in them. I’d prefer to do external, which is what it sounds like Dr. Hinni performs. But Dr. Bove (who I believe only does tonsilar) is closer to family and would be much easier logistically.

Have my CT today and hopeful that they are getting the right one. I’ve been logging my symptoms so that I’m more prepared for my consults in January. Hopefully I have everything prepared! I’ve heard instances where they have scheduled surgery right away so want to make sure all of my ducks are in a row.

It’s going to feel like my first consult is tomorrow since I will be traveling until then… Traveling to Chicago for the holidays to spend time with family and then for a vacation in Orlando. Have a 19 month old toddler so have to make sure that the holidays are special for him!!! I’ve had some pretty rough days lately, but soldier on through the pain as I’m sure most of us do.

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Let us know how your appts go, definitely don’t envy you managing a toddler while havibg ES symptoms…Hope his Christmas is magical!

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I’ve finally received my CT results and am a bit weary. Still looking forward to meeting with the two doctors that I have consults with. According to the radiologist, my styloid process measures 3.3cm bilaterally. When I looked at the scans (although I am not a doctor), they looked much longer to me. My calcified portion extends to the level of C2. They aren’t calcified all the way to the insertion of the lesser cornu of the hyoid which is good news.

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Hopefully someone will chip in, but I’ve not heard of that before- does it look like the styloid process is causing the deviation, or is it a coincidence? It will be interesting to see what the other doctors you see say, maybe you’ll needan opinion from a vascular surgeon also?
Sorry that this really complicates it for you…thinking of you.

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Hi melisyte,
The only other person I know of who had a sort of carotid complication is julianeagle. Apparently the carotid arteries can “sandwhich” an elongated styloid but in her case, both the internal & external carotids were compressed under her elongated styloid which made her surgical situation more touchy. She did have a successful external styloidectomy done by Dr. Samji.

It will be important for you to find a surgeon who is very experienced in operating in that area of the neck as a well-practiced surgeon is likely to have come across other challenging situations & will be more confident about helping you.

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Getting ready for my appointment with Dr. Hinni next week. Fly out on Monday. Having a shit day. Or a shit two days. Went on a lovely vacation with my hubs and toddler but obviously overdid it. I wanted it to be an amazing trip so just kept pushing through.

The flight home triggered more severe neck pain and have now been dealing with severe pressure in my head, vertigo, headache, noise sensitivity, nausea and more - like a really bad migraine. Can’t lie down or it is worse. But can’t sit too long because of the neck pain. It’s been two days of this.

Went grocery shopping today which I shouldn’t have done. Came back much worse. I’ve found shopping carts are my enemy!!! So, I lie in bed while my baby runs around downstairs calling for Mana. I’m literally crying in pain.

I guess I’ve had a lot of these episodes but when I’m so close to meeting my surgeon it just feels worse.
I just hope this episode passes before my flight to Phoenix!!!

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Hi Melisyte,

I’m so sorry to hear about your vacation not playing out as you hoped. ES is a “dirty bird” that way. You can never tell when symptoms might flare & ruin a good thing. Migraine level headaches are not uncommon w/ ES but the good news is that they do decrease or completely disappear once you have surgery & are healing. If you have a recliner, try using that for sleeping & find a position between lying & sitting. You could also get yourself a wedge pillow (which you’ll need after surgery as lying flat is not recommended for several weeks post op) & add additional pillows to it to elevate your head/shoulders when you’re trying to sleep in bed.

Try ice &/or heat on your neck to see if that helps at all. Ice will help reduce inflammation which is at least in part contributing to your current symptoms. Compression on vascular tissues is likely causing the headache, vertigo, & head pressure. You can experiment w/ your head position to try to find one that helps relieve your symptoms (even if it’s not facing forward).

Dr. Miiligan is also in Phoenix. He’s done successful ES surgeries for several members on this forum. If I’d realized Dr. Hinni was in Phoenix, I’d have suggested you try to also get an appointment w/ Dr. Milligan for a second opinion if Dr. Hinni’s appt doesn’t go as planned. Hopefully, Dr. Hinni will be your man & will support you completely, & you’ll get surgery scheduled!!

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Thinking of you- must be so hard coping with ES & a toddler- I was lucky that my boys were older when I got the worst ES symptoms. Thinking of you & hope that as Isaiah suggests you can find some way to relieve things. One member found lidocaine patches did help.stuck on her neck, it might be worth a try. I found flying really increased the head pressure symptoms, so that’s likely to happen again…I hope your appt. goes well.