Some Thoughts & Observations

I have been benefitting from this site since last fall and have learned a tremendous amount about ES symptoms and treatment options. I have been beyond thankful that I found this site as it has helped to de-mystify many of my ES symptoms & helped to explain some of them.

I had my first ES surgery in Nov. 2014 & was due to have my second surgery on May 11 but had a bad bicycling accident w/ a head injury on May 5 which has postponed surgery to Aug. 24. A symptom I was only having intermittently prior to that time has become very pronounced & is causing me to periodically lose significant hearing in my left ear (the side that needs surgery). My ENT told me, he thinks I have Bell's Palsy in my 9th cranial nerve (glossopharyngeal nerve) based on my hearing test results. He said there is no possible way, based on the body's anatomical construction, that my ES could have anything to do with this problem. He put me on a Prednisone regimen for 2 weeks (which has changed nothing).

My symptoms seem to coincide with exercise, so I disagree with him & told him so. If I exercise (i.e. jog, do pull-ups, push-ups or other things that increase my blood pressure) then within 24 hrs my left ear develops a feeling like I have an earplug in & I get tinnitis - low pitched ringing but very pronounced. The sounds coming into my ear are amplified & distorted. High-pitches & loud sounds are painful to listen to. I have found wearing an earplug during these episodes helps keep me more comfortable. This problem usually lasts 2 days. By the afternoon of day 2, I often develop positional vertigo (not incapacitating but annoying). When I wake up on the morning of day 3 the symptoms are usually gone & my hearing has returned to normal.

There are variations on this theme but you get the idea. My conclusion here is that though my ES may not be directly influencing the GP nerve, it's causing some sort of inflammation which through a chain reaction is affecting it. This chain reaction is onset by exercise which I am dramatically toning down in an effort to prevent permanent hearing loss. It's so very interesting the extent to which an extended styloid can interfere in our daily activities!

Additionally, I have puzzled about the fact that though my styloids are extremely elongated (only one now), my symptoms have only been mildly annoying compared to so many others on this site. I have had vascular (head & heart) symptoms as well as just straight ES symptoms (ear, jaw, headache, eye, & neck pain, etc.) I know styloid angle plays a role in symptoms, but as I have especially contemplated the blog posts related to diet & exercise & ES symptoms, I have come to the conclusion that perhaps my symptoms have been as minimal as they are because of the way I eat & the supplements I take. I have been on a very low sugar, no grains, legumes or dairy program for 3.5 years. The bulk of my protein comes from chicken & fish w/ a little lean beef & pork added in & my carbs are veggies (especially root veggies) & fruit. I am about 95% successful in this endeavor. I aim to eat to reduce inflammation in my body & to keep my overall body pH on the alkaline side (which is also anti-inflammatory). I drink 80-128 oz water per day.

As I was low in Mg before I was diagnosed w/ ES, I take a lot of magnesium (citrate & glycinate) each day via supplements. I also take calcium supplements, a good quality multi-vitamin, B complex, fish oil & turmeric (as a natural anti-inflammatory). I can't say definitively that my diet & supplements are making the difference in the severity of my symptoms but they sure aren't hurting!

I hope this very long post contains info that will be helpful for others on this site. Thank you to everyone for posting symptoms, suggestions & support. It's all so very beneficial!

In the research info section, the last piece of research specifically looks at the effect of ES on the glossopharyngeal nerve, so I'm not sure why your ENT said that it wouldn't be affected. An anti-inflammatory diet sounds like a good idea, but it is best to check with your doctor if on other medication just to make sure that supplements won't affect it. Hope that your operation date in August soon comes round for you!

I know there is another person on the forum who got bell's palsy and it came after she was diagnosed with eagles. She think they are related as I understand.

I had glossopharyngeal neuralgia that was completely cured when I had eagles surgery and I know that GN is often considered to be a symptom of eagles, so I'm not sure what your ENT means. Does he mean the eagles wouldn't cause bells palsy or wouldn't affect the GN nerve?

Wouldn't affect the GN nerve.

I've been on the Ben's Friends GPN site to see if I could find out info about medications, and ES is on one of their info pages as a common cause for GPN too!

Feel free to join our GPN community, too, Isaiah. You are welcome to belong to both.

Isiah

I am happy that I have found this group and I came with the purpose of not only learning more about ES, but the relation it may have with SCDS. All of the symptoms that you describe after your accident seem like you may have SCDS. I really believe that they have some relation, maybe not the exact same disease, but both must be caused by some factor,one causing a bone thinning,one causing the styloid growth. I just feel there is something where they are in the head neck area and related to bone growth.

I would ask for a high density CT to make sure that a thin bone in your ear canal has not broken or gotten a hole from your accident. Only a handful of doctors know about it so they do not always look for it.

Thank you for this information, Ruthie! I will look into what you suggest. There's always something new to learn about our bodies especially when they're malfunctioning. There are so many intricate parts and interactions between them that no one but God can know or understand them all. Each new bit of information I receive from this site is instructive & interesting even if it doesn't apply to my particular situation.

:)

Isaiah - someone sent me a link to a journal article on GN from 1999 where they state: "The most common secondary cause of neuralgia is the Eagle’s syndrome or styalgia. It is a glossopharyngeal nerve hyper-excitability syndrome caused by compression of the nerve against an elongated or fractured styloid process or a calcified stylo-hyoid ligament."

This is the link: http://www.sma.org.sg/smj/4010/articles/4010ra1.htm

This was from a discussion I believe Earmom posted about a year ago. This is just one journal article example. I'm sure if anyone wanted to look further, they could find more articles about this.

It's funny that you're discussing this with your surgeon because he was also my surgeon and his first surgery on me was the one that finally cured my GN.

I saw my surgeon again today as my hearing difficulties are getting worse. He clarified that it's my vestibulocochlear nerve that is irritated & causing my current hearing loss & that it's my GN that is causing my ES symptoms. Guess I was just confused by nerve numbers (i.e. cranial nerve 8 vs cranial nerve 9). Thank you for the info & the link Heidemt!

heidemt said:

Isaiah - someone sent me a link to a journal article on GN from 1999 where they state: "The most common secondary cause of neuralgia is the Eagle’s syndrome or styalgia. It is a glossopharyngeal nerve hyper-excitability syndrome caused by compression of the nerve against an elongated or fractured styloid process or a calcified stylo-hyoid ligament."

This is the link: http://www.sma.org.sg/smj/4010/articles/4010ra1.htm

This was from a discussion I believe Earmom posted about a year ago. This is just one journal article example. I'm sure if anyone wanted to look further, they could find more articles about this.

It's funny that you're discussing this with your surgeon because he was also my surgeon and his first surgery on me was the one that finally cured my GN.

Sorry to hear that- does he think your hearing will return to normal after surgery? Could he bring the surgery forward?

God Bless, Jules.

I did ask about that & he said he doesn't have an answer. I know God is "in the mix" so I am at peace with whatever happens. He said he wouldn't operate till the hearing problem is resolved because he has to block the blood flow to my neck during surgery & he fears that would further impact the already irritated nerve & potentially cause permanent damage (if it's not already permanently damaged). I will see his associate who is a hearing specialist next Wed. Will keep you posted.

:)

Hi Ruthie,

I saw a hearing specialist today & asked about SCDS. He feels very strongly that I have Meniere's Disease which is the result of a head injury I recently suffered when I fell off my bike. I still think my symptoms are somehow related to ES but my surgeon won't do my surgery until my intermittent hearing loss is resolved, so I'll follow the ear doctor's orders to see if I can get rid of my symptoms. He has ordered an MRI & said he would later follow that w/ a CT scan to check for SCDS if my symptoms don't disappear over the next month.

Ruthie said:

Isiah

I am happy that I have found this group and I came with the purpose of not only learning more about ES, but the relation it may have with SCDS. All of the symptoms that you describe after your accident seem like you may have SCDS. I really believe that they have some relation, maybe not the exact same disease, but both must be caused by some factor,one causing a bone thinning,one causing the styloid growth. I just feel there is something where they are in the head neck area and related to bone growth.

I would ask for a high density CT to make sure that a thin bone in your ear canal has not broken or gotten a hole from your accident. Only a handful of doctors know about it so they do not always look for it.

Isaiah

I am happy that the hearing specialist listened to you, I wish that he would just go ahead with the high density CT rather than waste time on the MRI though. I hope you get comfort soon.