Anyone else have these symptoms.......?

I was diagnosed with ES and planning to have Dr Hackman remove the styloid ligaments on both sides.
I have read and gained great advice with regards to the procedure and surgeon via this blog.
What that research has also highlighted is that my symptoms appear to be different to the majority of symptoms described on here, so I am questioning whether or not the surgery will indeed address my main issues. I wanted to see if anyone else has these same symptoms, and if the surgery did improve their condition significantly:

  • Base of skull pain
  • Back of neck pain
  • Temple and forehead headaches
  • Shoulder and arm aches and cracking
  • Unable to look up without triggering pain

I do not have symptoms related to throat, swallowing, tongue or ears ringing.

Thanks so much for anyone who takes the time to read and respond to this post.
This site and its users have been incredibly helpful,

1 Like

The styloids can compress/ irritate the accessory nerve to the shoulders, which can cause pain &/ or weakness.
Base of skull pain has been mentioned by members as a fairly common symptom, as are headaches. Headaches could potentially be cause by muscle tension, as could the pain in the back of your neck- it’s quite common to have a cycle of pain perhaps caused by the styloids, which causes stress & tension, which causes muscle knots, which trap nerves, & then causes more pain…
Everyone’s styloids cause different pain, depending on the angle they grow at, & the position of the nerves etc; for me, I would get pain turning my head, but for others it’s worse looking up or down. (Surgery cured that symptom)
Not everyone has the classic pain while swallowing or poking in the throat symptoms- I never did, so it doesn’t mean you don’t have ES if you don’t have them.
Unfortunately none of us know what symptoms will be helped with surgery, nor can doctors say, so it has to be a personal decision of how badly your life is affected, & compare the potential benefits against the potential risks.
Hopefully others will chip in with their experiences!

2 Likes

This is a fantastic reply, thank you so much Jules. I am extra cautious as I am a mother of 3 young boys with little support, yet I braved major spine surgery two years ago, which was meant to address a lot of these issues, but didn’t! Since then I have learnt about ES and this site, which gives me so much hope! Thank you again for your reply x

1 Like

That’s really difficult, I can understand you’re wary of surgery after having already been through that…You would need help after surgery; if you overdo things it can set healing back.
Some members have tried injections of steroids &/or lidocaine into the tonsil area- it doesn’t always work but has helped sometimes until people can have surgery.

2 Likes

Hi @Zoe,

I can confirm these observations too. I have that sometimes more sometimes less, as well as the other typical symptoms. For me it sounds all plausible for ES.
My osteopaths says that it is meanwhile disturbing whole chains of muscles down to my feet. I can feel and confirm that too. When he injects local anesthesia in myogelosis like spots in my jaw, neck and shoulders in sense of “Neural Therapy” the tension gets much better in that second he is infiltrating the right spot. That lasts a while and much longer than the Procaine numbing effects.

I whould also agree to @Jules and can maybe add a theory from my personal observations:

I think the irritated cranial nerves could cause irritation in brainstem too, as they arise from Rhombencephalon (a part of the brainstem). This is where the body’s motor skills are controlled. Perhaps this leads to muscle tension in more distant areas of my body. But that’s just a theory that could be tested if doctors would be a bit more interested in ES.

Best regards

2 Likes

Here is a good overview on Neural Therapy:

2 Likes

Hi Zoe,

I had terrible pain at the base of my skull as one of my symptoms. Though I never had headaches as a chronic ES symptom, I did have pain in my forehead & left eye, along my upper & lower jawlines & in my collar bones. I expect the facial & eye pain came from my trigeminal nerve & facial nerve & it’s possible the pain at the back of my skull was from my vagus nerve. If you look up the cranial nerves ES can affect & see where they lie in the body, it will help you to understand why you have pain where you do.

Jules wrote a wonderful post about ES symptoms & their possible causes. It’s easy to find if you click on the magnifying glass icon & type in - symptoms.

2 Likes

I didn’t have the throat or tongue pain. I had wild headaches, positional, electrical, stabbing. Face neuralgia. Shoulder and neck pain. Double and blurry vision. I had bilateral intr oral syloid and process removal with the Davinici robot Nov 2019. I was 80 percent better immediately. However I have many other health issues. Nothing to do with Eagles Syndrome. He did take everything out and he warned me of all the risk and that fragments can break off in surgery. Unfortunately I started having temporal pain and jaw pain recently and he did a CT scan and I had part of my process break off on each side and calcify, entagled in nerves. He was going to take both fragments out Feb 26th but he got in there and he said he had to move so much around he felt better waiting on the right side until the left recovered. All went great and I am doing the right side next Friday. I can’t say enough about him. One of the best doctors/surgeon you will ever find. Best of Luck to you!

4 Likes

Thank you for the good report about Dr. Hackman, adriene61. I’m sorry you’ve had to go in for another round of surgeries, but I’m glad the first one was successful & the second, & hopefully final one, is coming up soon.

I’ll put your surgery on my calendar & will pray for you then. :sunflower:

Thank you! Hope your doing well!

2 Likes

I hope your surgery goes well! A shame to have to go through it all again, but will be thinking of you & praying for you, God bless…

1 Like

Thank you for this comprehensive and helpful reply. I am now looking into Neural Therapy also. Thanks again x

Thank you Isaiah for taking the time to write this reply, it has been most helpful. I’ll search now and read the symptoms post you mentioned, and the Cranial nerves affected. Thank you x

1 Like

Thank you for this helpful account of your experiences with Dr Hackman, I’m just so sorry you had to have repeat surgery. I addressed my concerns with Dr Hackman last week and he said I had valid reasons to question the efficacy of the surgery as my symptoms weren’t throat & ear pain or swallowing issues. Adriene, did you find the surgery helped with your initial symptoms, which also weren’t throat or tongue related?

Hi Zoe -

My E.S. symptoms were constant headaches, pain in the back of my neck & base of skull pain, lightheadedness, & a cough. I triggered my symptoms when I looked slightly down - like looking at my phone. I also would have symptoms when I sat on the couch at night watching TV. That got really bad towards the end - terrible neck & head pain.

I just had my 2nd surgery on Tuesday, but prior to that, I had my 1st surgery in January. After the 1st surgery my headaches pretty much went away, except for a few (only five in 4 1/2 months). My neck pain, now that you mention it, is completely gone. I still had some lightheadedness & symptoms when I moved my head in a certain position. It’s too early to tell with the 2nd surgery. But for sure, the 1st one improved my symptoms, drastically!

There isn’t enough vascular E.S. cases for the doctors to say that definitely the vascular symptoms will go away with the surgery. My doctor would just say. - “logically” these symptoms seem to be caused my the styloid pressing on whatever it’s pressing on & it should be relieved, if you remove the offending bone. In my case, the styloids were pressing on the jugular veins on both sides of my neck.

2 Likes

Thanks for such insightful information on Dr. Hackman. I to have been diagnosed recently with ES. My primary care physician. after reading so much from these chats, has referred me to Dr. Hackman. I was told they would contact me in a few days. I have bilateral ES measuring 5.5 cm on both sides. My symptoms have been somewhat typical with the swallowing, ears, neck and jaw pain. I also have pain in my shoulders. I read about an ES patient who had problems walking. I do not know if that is a common symptom but I too have had mornings when I was unable to walk. I have been seeing numerous specialists for symptoms that my reading on ES say others are having. At the present, time I am in unbearable discomfort with pain and anxiety. I have not had any success with injections, steroids or gabapetin. I really need support. Thanks for listening.

Hi Dcau,

I’m sorry your symptoms are so debilitating, but am so glad to know you’ve been referred to Dr. Hackman and the wheels are turning for you to get an appointment with him. Hopefully that will be soon! You’re styloids are very long and having them removed should make a HUGE difference for the better in how you feel.

I can’t answer the walking challenge as a symptom unless it has to do w/ possible vascular compression & blood flow to or from the brain OR inner ear nerve disturbance which all could be caused by ES.

As you’ve most likely read on here, no doctor can promise a particular outcome. They can remove the styloids as carefully as possible in hopes that you’ll be completely healed, but in the end, it’s how your nerves & other soft tissues recover that determines the final results. Our bodies are made to survive & thrive so they are good in the recovery department.

I’m glad you’ve found us. We look forward to supporting you, however you have need. :hugs:

1 Like

Thank you so much for your encouraging words Isaiah. Just your response made me feel better.

1 Like

What do you mean by not being able to walk? Due to dizziness or like your legs won’t move? I’m sorry you are struggling.

Welcome @Dcau ! Wow! Your styloids are really long! Hopefully they can help you quickly. Could it be the vagus nerve that is affecting your walking? I am curious about this.