It does sound like your hyoid processes couls well be causing symptoms too then, so it would be worth discussing this when you get an appt.
Thanks!! My sister and I always joke about my weird rare conditions and we were laughing about how my skull was too small for my brain and now my hyoids and styloid process are too bigā¦ and there no happy medium for me anywhere lol!! I say this as I lay here at 3:15 a.m. with my face half numb, my ears ringing, and every time I move my eyes anything I am focusing on has a 3D effect with a kind of shadowy trail thing shooting behind itā¦crazy visual field thing I getā¦so I know something is going on and roll the dice is it Chiari or Pseudotumor Cerebri or ES causing this little episode?? I know you guys understand the struggle bus I am on with trying to figure out what you are dealing with and get it managed or at a manageable level. And I am so thankful to have found this group!!
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Well 4cm is pretty darn long not to mention the horns. You really wont know until after surgery what symptoms are what. Its pretty safe to say with those horns and that length, its causing some problems. All I can say as that I started having alot of eye twitching before my pain flair got bad. I suspect this is from tight temples and jaw from TMJ and trigeminal nerve irritation. Nerve blocks can help narrow some of these symptoms down in the right doctors hands. Botox and steroid injections helped me in the short term to calm the pain. I have had longstanding neck instability from the EDS that puts my neck and jaw out of joint all the time. There has been times in my life, I was told I had an āeye movementā disorder which comes and goes. When things come into my vision field from the side quickly, it can throw my balance off and I have to grab onto a wall or something to stabilize me. Although not sure about u, I had the facial numbness, ear pain and ringing. Many of us have had those symptoms.
I have issues with balance for yearsā¦which is part of the Chiari and could also be part of other things as well. They removed part of my cerebellar tonsils, most of them actually which is a big part of your balance area so I tend to have issues with going up and down stairs and anything that takes any form of balance at all. But the visual disturbances do make the balance issues worse now that I think about it. They exacerbate the dizziness too. I do get ear pain or pain right below my ears that is sharp and stabbing. More so on the left but it does happen on the right. Tinnitis is bad all the time anymore. Drives me absolutely bonkers!
Hi amybaby, the pain in your ear & below it plus tinnitus are typical ES symptoms. I am sorry youāre getting those symptoms more frequently. That inner ear stuff plus visual disturbances do wreak havoc on balance & provide a general feeling of instability for sure. Very annoying! I do sympathize. Iām on my third day of mild vertigo (inner ear issue not ES related). Feeling tipsy all the time is kind of odd!
That ear pain below the ears I believe is the styloid. At least is was for me. The nerve pain I had can be described as an electrical jolt starting mid-neck traveling up to below the ear and ending with an excruciating explosion in my ear. It is the worst. Makes you want to grab your head and hope like hell it stopsā¦till the next time. Hang in there. You will get past this.
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Just saw our only Eagleās specialist in Oklahoma at OU medicine in OKCā¦Dr. Krempl who was on the list provided on here. Saw him yesterday and he noted that my case was a little different than most he sees with my calcification being off the hyoid and then none in the middle and then coming off the styloid as well. He said that with my Chiari, Intracranial Hypertension and Syrinx that he cannot be certain that surgery for Eagleās will take care of symptoms since a lot of them overlap, but that there is a 50% chance that some of them can be helped or relieved with it. So I opted to try. My right side is worse than the left, but right now my insurance out of pocket is met so I opted to do both sides at onceā¦and he has agreed to do that as he does them that way at times. Surgery is scheduled for December 3rd as long as I pass that dreaded Covid test!!!
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Iām so pleased that heās agreed to help you! It is hard when thereās overlapping symptoms. The only thing Iād say is having both sides done at once isnāt done very often as there can be alot of swelling, & so could be a tough surgery to recover from. Hope that Covid test is fine, & will be praying for you 
I am pretty happy that he is doing both at same timeā¦financially it is a huge blessing! And I am sure it will be pretty rough to recover, after getting through Chiari Decompression, I learned I could make it through just about anything if I set my mind and heart to itā¦that was really rough too. Over the last 10-12 years I have come to realize those of us with all of these chronic conditions are made of some pretty stout stuff to make it through what all we go throughā¦ I will take all the prayers you send this way!! They are most appreciated!!
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Stern stuff indeed! 
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I watched my close friend go thru chiari decompression and YES you can survive anything after that one! You having external or internal?
Im going in for my other side on the 7th. Looks like a few of us will be recovering for the holidays. Ive met my coinsurance limit too and crunching in as many doctors visits as possible. I will need to do COVID test 3 days before surgery. Iām in a semi self-quarantine the next two weeks and yesterday was last day at work for awhile.
I hope this surgery gives you some much needed relief. 
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Iām really glad to hear youāre getting your surgery so soon, amybaby. Are you getting both the hyoid bone & styloid(s) taken care of?
I agree w/ Jules that recovery may be a bit challenging w/ bilateral surgery but hopefully a far cry easier than Chiari decompression was. If you can tolerate Prednisone, ask Dr. Krempl to Rx a post op course for you. So many doctors donāt (which surprises me), & it is so helpful in reducing post op swelling.
I put your surgery date on my calendar & will pray for you & Dr. Krempl that day in particular.
Yes he is doing both the hyoid and styloid bones!! Yay!! He explained that typically he sees them calcified all the way down or longer off the hyoid instead of the styloid like mine isā¦I told him jokingly nothing about me ever fits the norm! 
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Yes he is taking out both the hyoid and styloid yay!! He did comment that he usually either sees them calcified all the way down or longer from the hyoid and shorter from the styloid where mine is the exact opposite. I jokingly said nothing about me ever fits the norm!!! Like my recent shoulder x-ray for a fall that shows there is a downward slope in bones and no room for bursa between all of them which is why I had bursitisā¦of courseā¦another thing that is not shaped correctly lol!!
But, I will mention the steroids as yes they would help with swelling especially since I have an autoimmune disease and anything surgery wise causes extra inflammation and swelling and with this already doing that anyway they would be very helpful. I have my neck ice packs in freezer ready to alternate outā¦I use them on my neck muscles that still tighten after Chiari surgery where they were cut. And have bought lots of different types of soft foods in prep for it as well as Pedialyte freezer pops for soothing and hydration. Herbal teas and honey too for soothingā¦is there anything else you recommend?? I will take any and all ideas!!! And any and all prayers are greatly appreciated!!
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I assume you have a wedge pillow so you can sleep upright? I also got this U shaped pillow that Jules suggested I put on top of the wedge. It helped me to stabilize my neck and take pressure off my shoulders while sleeping on my side.
Sounds like you are well prepared. I hope you get the prednisone. I personally think it makes all the difference in the world especially since I cant take NSAIDS. It gets you past the first 10+ days of swelling.
I over prepared and bought all kinds of soups,etc. I found I just went for other comfort foods I could just microwave. Jimmy Dean breakfast bowls were great in the morning and helped settle my stomach from the medications. They are high and calories and alot of fat but it slides down easy and soft. Mashed potatoes and mac and cheese were my favorites. Good luck amybaby! All will go well. I listened to everyones suggestions here and it so helped to not be flying in the dark.
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I donāt have a wedge pillow but my husband has made a wedge under our mattress that makes it really elevated then I elevated more with two pillowsā¦I was told to elevated the bed a few years ago after my thyroid surgery when they also found spots in my throat from acid reflux. I will get a U shaped one too. I got the mashed potatoes and Mac and cheese mostly instant bowls that would be easy and puddings and jellos.
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I loved smoothies, lots of banana, pineapple juice & yoghurt!
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Yum!!! Thatās a great idea!!
OK so I did the unthinkable & had my husband blend a whole dinner meal in the blender i.e. meat & veggies w/ some almond milk. It looked awful but tasted great! A warm āmilkshakeā. You could also add mashed potatoes to make it thicker. 
That sounds good! We are at hotel now post op. I was a 2 pm surgery that ended up not starting until almost 4. Got to hotel about 9. I got a little pudding down to take meds and am sipping hot tea right now.