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Eagle Syndrome - Online Support Group

Does anyone ever get better?

I have had a headache in my right temple for 6 years. I have been to 4 primary care doctors, 2 neurologists, a TMJ expert, 2 dentists and have had CT scans, physical therapy, dry needling and most recently an MRI. After the visit to the TMJ
expert, my current primary care physician received a letter suggesting a diagnosis of Eagles Syndrome. (When I called the TMJ doctor to ask about Eagles Syndrome and what she saw in my exam to suggest it, the office staff denied (?!) having offering that as a diagnosis. I have a copy of the letter dictated by the doctor. :roll_eyes:

I have an initial consultation with Dr. Luke Phillippson at Butler University in Muncie, IN scheduled for 9/21. I have been reading stories here in Living with Eagle, for several months. What has really struck me is that so many stories do not include reports of “complete” relief from symptoms after surgery. Am I wrong or missing something? I am very skeptical about Eagles Syndrome as a diagnosis for myself since I have no other symptoms besides a chronic headache. I really feel for the countless people who have this awful stuff and the journey you have had to take to get treatment but I really cannot mix in another “possible” health problem with surgery as the only treatment. I already have my plate full. If I knew that treatment meant “cure” maybe it would be worth the risk. Is anyone here completely free of symptoms?

Lori, if you have Eagles, the longer it affects your nerves the more permanent your symptoms can be. Yes, many people get cured. Not everyone gets complete cure. You are right to wonder if headaches are the only symptom.
However, depending on the type of headache, it could be from a nerve that is compressed.
MRI is not the best tool for Eagles,CT scans of the neck especially 3D scans that are looking for the styloids are the best. MRI might show the nerves in relation to the styloids and are used to rule out any other conditions that might cause the pain, or need to be resolved.
A good head and neck surgeon who does skull base surgery could verify Eagles or not.
If you already have 2D head and neck C, you may be able to determine if you have Eagles.
Trigeminal neuralgia and glossopharyngeal neuralgia both cause headaches and they can both be caused by Eagles. GN or TN surgery alone will not rid you of pain if the problem is a styloid compressing it.
You can make a 3 D slicer picture of a 2D scan Using a tutorial on this site, but if you do you will have to take a picture of the computer image with your cell phone or other digital camera. The free version of 3D slicer does not allow saving.
Isaiah 40:31 and Jules can give you more information. Also, many have been diagnosed with other health issues like fibromyalgia. You say you have other issues. If they are health issues, you can check the many symptoms of Eagles. If you do not physically have Eagles and your styloids are not long or twisterd or thick, you could put Eagles out of mind.

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Good morning Lori,

I empathize with your question and as much as we don’t want to hear this answer, the truth is it’s complicated, especially when the topic is headaches. It sounds like you have sought out many specialist to find the source of your HA and Eagles surfaced, but even with elongated styloids that alone may not be the sole source of your headache. As @emma said nerves can be compressed. In addition the vessels may be compromised resulting in decreased blood flow from the brain causing head pain. Some people have related cervicogenic HA’s (coming from the neck or cervical spine) as the styloid comes into contact with the upper spine itself. This of course is only the tip of the iceberg in the arena of headaches which can be daunting.

My take home message is take one thing at a time. Use this site to find a solid referral to rule on or out Eagles syndrome with or without vascular complications. Do not rely on your PCP if they have dismissed you already, move on. This is a very real problem and if fully examined can be a great source of relief of your pain. Arm yourself with research and knowledge, ask a lot of questions. Keep digging, and don’t loose heart! Hope this was helpful.

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I think the other thing to remember is that on sites like this, the people who tend to hang around are the ones who do not get symptom relief. We’re lucky to have folks on here who did, for all intents and purposes, “recover” to help guide us, but by and large people who have great symptom relief have no use for this forum anymore and go back to living their lives.

I had serious knee surgery about 2 years ago and, in reading about it on forums, I was terrified. So many people had worse symptoms after the surgery and were arguing that basically no one should have it ever. I was ready to cancel my surgery altogether until someone made a comment along these lines on that forum. I had the surgery and while I still have some pain, I have my life back. Sure enough, I haven’t been altruistic enough to go back and post about it on any of those forums.

Just remember that any support group is not giving you the full picture. People use support groups because they’re suffering and in pain, so what you’re going to see from people on support groups is largely suffering and pain. I think you’re definitely right to question your diagnosis if your only symptom is headaches. Don’t be afraid to ask your doctor questions and get a second opinion (which can be tough with ES, but potentially worth it in your case).

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It is a difficult one- in some ways the only way to know what symptoms are down to ES is to have the surgery & see what you’re left with, but then as the surgery has risks, you don’t want to have it unless you really need too…I can understand that you want to be sure, it does sound like you do need more info as emma & justbreathe say before you decide.
I think potentially with every surgery there are lasting effects- I’ve had 2 C-sections & get discomfort around the scar, & am quite numb for example. I wouldn’t say I’m 100% cured from ES; I do still have some nerve pain, but then like many of us I do have other neck issues which complicate things, some of the nerve pain could be from that too. But the vascular symptoms I had before surgery are pretty much gone, I was feeling so ill before surgery & feel massively better now, it was so worth getting the surgery done for me.
As kittchenita says, many members who have problems after surgery come back on because they need advice & support, those who have a successful surgery often don’t come back on, they just want to get back on with their lives (understandable!), so you don’t hear their stories. I was ready to rule out surgery after I read a member’s story about how grim he felt afterwards & how he regretted having it with the doctor closest to me; luckily I messaged him a couple of months later, & he said ‘oh yeah, I felt awful then but loads better now, glad I had it’, he never came back on to say that though! So I got a referral & got my like back! So sometimes the discussions are skewed, but if you search for success stories, they are there!

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Thank you so much. You stated the obvious. Of course people who get relief move on. I was considering not keeping my appointment with Dr. Phillippsen. I have reconsidered and will stay on with you all regardless of my results! I hope I can be helpful to you all in the coming months.

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It definitely makes sense to be skeptical and get as much info as possible before surgery. The first time my doctor mentioned Eagle syndrome was in April or May (been seeing him since March for this issue) and I am still waiting on tests to confirm his suspicions – a cerebral angiogram to examine the veins in my head and neck. However, my main symptom is head pain. It’s behind my eye, on only my right side, sometimes it goes down into my neck and shoulder and ear as well, and sometimes I have a feeling of something stuck in my throat on that side. But the head pain (diagnosed as migraines five years ago) is my worst symptom and it has gotten worse over the years, to the point I was dealing with it every single day, which is what finally led me to look for more answers. My doctor’s explanation (based on testing I’ve had done and his experience treating Eagle’s) is that this is potentially due to the arteries in my neck being compressed by my styloid and/or the ligaments attached to the styloid. Nerves can be affected as well as other posters mentioned. I am now on a blood thinner that has improved my symptoms by about 80 percent, so that is some pretty astonishing (to me) confirmation that the compression of my veins could really be causing majority of my pain, which I did not think was possible before.

It is discouraging to read stories of folks who have not had much relief from surgery, but that is unfortunately a risk and as @kittchenita mentioned, they are more likely to post and seek help. There have been a few people who have had surgery recently who have seen major Eagles-related symptom relief, though they are now dealing with some side effects of the recovery, and recovery can take awhile. I hope you can get more info from your appointment that will give you some clarity on this. If your symptoms are not that bad, you may decide to hold off on surgery, and that is just fine. At least then you will be armed with the information you may need if they eventually get worse and you do seek surgery. Hang in there!

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Blossom…thank you for the information. Wow! I was just diagnosed with DVT (Deep vein thrombosis) and CVI (Chronic Venous Insufficiency). I don’t know why but my PCP didn’t prescribe a blood thinner. I have wondered about Giant cell arteritis vs. Eagle syndrome. I will be seeing a vascular surgeon. Maybe another possible treatment rather than surgery (?).

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I’m not familiar with that other condition but one that was floated for me was idiopathic intracranial hypertension. Intracranial hypertension can also be caused by compression of the vein by the styloid, which is what my doctor thinks is happening to me, or it can occur due to a narrowing of the jugular vein for whatever reason. My understanding is increased pressure in the brain can be bad long term and can affect your eyesight which is scary. I’m not sure if the blood thinner is just masking my symptoms or actually helping, but it’s something I have thought about continuing instead of surgery (if safe and recommended by my dr, I’ve only been on it two months.) A vascular surgeon should be able to answer questions about a blood thinner helping with your symptoms and potentially whether your styloid could be compressing your vein. It’s definitely something I’d ask about! An ENT/skull based head and neck surgeon is managing my care and generally they are the best surgeons for eagle syndrome but he has referred me to a vascular doctor (performed an ultrasound on my neck to check for vein compression) and a neurovascular interventional radiologist who will be performing the cerebral angiogram for me. Good luck at your appointment!!

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My appointment has been pushed back to October 19. Sigh… I am really glad to hear you are getting good care. If my doctors appointments fall flat, may I ask you who you are seeing?

Oh so sorry your appointment has been delayed. That’s so frustrating! I live in Colorado and I see Dr Hepworth, he is an ENT specialist and head/neck surgeon but has referred me to a vascular specialist for testing as well. He’s been very kind and helpful!

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