Chronological Symptoms and Events of My Eagles Syndrome

General
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Because this site has been so helpful to me I thought it might help future sufferers to see someone's chronological order of symptoms and events. It took 5 years and 8 different doctors for me to diagnose myself with this and finally get relief via surgery.

My hope is that if someone does a web search of symptoms that this will show up and lead them to this site. Here it is for what it's worth.

Chronology%20of%20Eagle%20symptoms.xlsx

74-ChronologyofEaglesymptoms.xlsx (12 KB)
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Thanks Groot- like many on here it's a shame that it took so long, and thank God that you connected with the doctor at Church! Hope that your recovery goes well! Just wondering- have you any problems with the left side, is that elongated too?

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Jules,

The left is elongated too but not as bad. I have another follow-up on 12/29. I will ask about it then, but I am not symptomatic on that side. The surgeon said it takes several weeks to get pathology on bone so hopefully that will be in when I go back.

One thing I learned is that he does a lot of these surgeries on cancer patients. Apparently, it is pretty standard to remove the styloid process if you have cancer in that region. I'm not sure why. Maybe they need to remove it to have better access to deeper areas?

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Yes, someone else had mentioned that their doctor had removed SP's routinely in other patients- sorry, can't remember who it was- it could well be to give them better visibility/ access.

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Wow I just read your chronology. Can you tell yet if you have relief from your symptoms ?

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It's hard to tell. My jaw is a little sore sometimes because not all of my swelling has gone down. My dizziness has been better since Saturday when the major swelling went away. After I hit the 4 week post-op mark, I will re-assess my symptoms. I know that my brain will need time to compensate for the new level of inner ear damage. I will probably start doing my vestibular rehab exercises at that point.

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Is the inner ear damage from the elongated styloid process? What is vestibular rehab?

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BeachGirl,

I have not been able to find anything that tells me why dizziness occurs with ES. No one seems to know the reason. Even the doctor that diagnosed me was asking me how they were related. Vestibular rehab is a series of physical therapy exercises that re-train your brain to translate the cues from your inner ear (vestibular nerve) and your eyes and other senses such as your posture. It works very well when someone has experienced damage to the nerve. BUT the damage has to remain constant so your brain can understand the new condition. If the damage is constantly changing because of an ever growing styloid your brain can never fully compensate and you end up always dizzy.

My theories are: 1.) The styloid process (SP) (my SP was fused to my hyoid bone) puts pressure on the mastoid process which can inflame the inner ear nerve - vestibular nerve. It's the same explanation as to why TMJ can cause dizziness.

2.) ES can cause occipital neuralgia which can cause migraines which can manifest as vertigo. It is called Migraine associated vertigo (MAV).

3. Impingement of the carotid arteries reduces blood flow to the brain and vestibular nerve.

It is puzzling to doctors because the SP comes into contact with 4 cranial nerves. The vestibular nerve is not one of them.

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There is a lot of information in the ES Information tab at the top of the page with information on why dizziness occurs.

One part in the ES Information tab talks about dizziness:

Symptoms common with Vascular ES are dizziness, weakness, or fainting (syncope). The styloid process is located between the External and Internal Carotid arteries, so if it is angulated, it can compress either of these. The stylohyoid ligament, if compressed, can aIso compress the arteries. It is possible that compression of the External or Internal Carotid arteries could temporarily cut off part of the blood supply to the brain, leading to a temporary loss of consciousness. Many people have found turning or moving their head into a certain position causes this, as this can move the styloid process or calcified ligament and so compresses the artery. In addition, pressure on these arteries can irritate the sympathetic nerve fibres in the artery walls, and this can send pain signals all along the artery. The ICA branches to the Ophthalmic artery, so if blood flow is reduced to this, there will be eye pain, and vision problems. Research states that if the ECA is compressed, pain is in the infraorbital (below the eyeand to the side of the nose), temporal, and mastoid regions (below and behind the ear). If the ICA is compressed, then pain is in the ophthalmic area (E.Beder, Ozgursoy, Karatayli: Current Diagnosis and Transoral Surgical Treatment Of Eagle’s Syndrome). And also ‘Hence, if the external carotid artery is affected, the patient may complain of pain in the neck on turning the head, or pain radiation to the eye, ear, angle of the mandible, soft palate and nose. When the internal carotid artery is involved, pain over the entire head and larynx may be involved.’ (Correll RW, Jensen JL, et al. Mineralization of the stylohyoid-stylomandibular ligament complex. Oral surg Oral med Oral path 1979.) Pressure on the ECA can also contribute to jaw pain. . Dizziness could be caused by compression of the Hering Nerve, which is a branch of the Glossopharyngeal Nerve, and connects to the carotid sinus to help regulate blood pressure. Also if there is compression or irritation of the carotid sinus- the area just before the carotid artery splits into the ECA and the ECA- this can affect the vagus nerve, and through the parasympathetic nervous system can affect blood pressure and heart rate. (see the link to R.B.’s post in the next section.)

The symptoms if the Jugular veins are compressed are slightly different. Because the veins take the blood flow from the brain, any compression of these interrupts the blood flow coming from the brain, and so therefore can increase the pressure in the brain (Intracranial Pressure- ICP). ). Over a long period sometimes other veins can compensate and take the blood flow away (‘venous collateral drainage’- Callahan et al). If the pressure in the brain increases, this is known as Intracranial Hypertension. Symptoms of this are also dizziness, plus headaches, tiredness, slow or confused thinking (brain fog), feeling of pressure or pulsing in the head and neck, feeling of pressure in the ears, pulsatile tinnitus (hearing heartbeat, often a whooshing sound), feeling generally ‘out of it’ or off-balance. It can also cause other neurological symptoms such as feelings of falling, or feelings of pressure on the head ‘like you’re wearing a hat’.

This is from an article I found:

http://www.jaapa.com/eagle-syndrome-a-rare-cause-of-dysphagia-and-h...

The most complex and worrisome symptoms of Eagle syndrome are dizziness and eye pain. These may be caused by carotid artery involvement due to the carotid canal's location medial to the styloid process. An elongated styloid process with a thickened, ossified stylohyoid ligament could compress the artery and result in ischemic consequences such as near-syncope and eye pain. Since the internal carotid artery is a main vascular supply of the brain, its compression has dire consequences. The ophthalmic artery, the first intracranial branch of the internal carotid artery, is at risk of compromised flow in the event of internal artery compression. Ischemic eye pain and visual changes may result in these instances. The patient's dizziness may also have resulted from compression of the glossopharyngeal nerve through compromise of its carotid body nerve branch (the Hering nerve). Furthermore, pressure on external carotid artery branches may result in claudicant jaw pain and contribute to eye pain via altered flow through anastomotic branches of the internal carotid artery.

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Thanks Heidemt. This is the best explanation I have seen so far. My doctors are very hesitant to say my dizziness was caused by this. They can't say for sure whether or not it was pressing on my arteries because they did not order a carotid angiogram. Some doctors don't order this test because based on the position of the head at the time of the test, you might not reproduce the compression.

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This is exactly describing my eye pain and dizziness. I cant believe this is still happening after 3 surgeries. I keep praying. :disappointed:.