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Eagle Syndrome - Online Support Group

Undiagnosed, CT results, my symptoms, ES? and questions

You’re most welcome. You’re analogy made me laugh out loud! :rofl: What a great picture! I could hoola hoop when I was a kid, & if I have the right weight & diameter of hoop, I can still do it, but the criteria are pretty specific for me to keep it going more than one circle before it falls!

No worries about subject changes in threads. Happens all the time. :blush:

I wanted to tell you I am looking forward to your updates and please continue posting! I will keep checking.

I’m no pro. But your hyoid also looks elongated and maybe(?) impinging like mine was? Just something to consider and look into.

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Today has been quite a ride so far. I met with Dr. Ramierez. He diagnosed me with ES. Also said my ligament is calcified which was not on the CT report. He thinks I would benefit from surgery but no guarantees. He operates through the neck and leaves about 1cm of styloid. He has done upwards of 30 ES procedures and says most people have significant relief. He explained how ES could be causing a lot of my symptoms. I am probably going to schedule a surgery date in December with him. I think he has enough experience. I hope it will help!

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Hi dje1976 -

I’m so glad you now have an official diagnosis done by a doctor who’s also willing to do ES surgery for you. Surgery WILL help. Getting the styloid(s) & calcified stylohyoid ligament(s) removed is the key. Your nerves & any compressed vascular tissues will finally be free of irritation & can start recovering once the styloid(s) are gone.

Good news, several members have had successful surgery with him. Let us know when you get a date!

Hi, my surgery is scheduled for Dec 18th, about 2 weeks away. I’ll start researching if there is anything I should do pre-op. Would be great to have a reduction in headaches/tinnitus/fatigue/etc/etc.

That’s good news, lots of info on here if you search for what to expect post-op, & you can search for a surgery shopping list too with ideas of what to get ready!

HOORAY FOR A SURGERY DATE! So glad you’ve been able to get that scheduled. I hope for you to start feeling much better so 2020 is a great year for you!

Hello, I had my surgery yesterday. Everything seemed to go well, I was originally scheduled to stay the night but they said since it went well that I could go home. I am resting now. So far I have not noticed any bad side effects or nerve damage (able to swallow and move my tongue/face/lips like normal).
The Dr. did remove the ligament and cut back the styloid about 2cm, so I have between 1-1.8cm remaining. He did note that there was scarring on the surrounding fascia and that the fascia was very tight on the blood vessels. The was surprised by this and could not explain why it was like this. He cut some of the fascia/scar tissue to release the tension (Fasciotomy). I was talking to my wife and we thought maybe the styloid was poking around causing the scar tissue, but not really sure, has anyone else had this or heard of this?
Headache is maybe reduced a little so far, but I think this will take some time (I know people have posted it can take weeks/months for symptoms to resolve so I will try to be patient).
I was given some ‘norco 10’ for pain as needed, I haven’t taken one yet.
I will have a follow up appt. in January.
Thanks to everyone for the support, and happy holidays!!

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It sounds possible that the irritation from the styloids could cause scar tissue. Hope that you do heal quickly, & that the headaches go.

Thank you for the update, dje1976. So glad surgery went well & your pain level is low. Days 3-5 post op are when the swelling & pain tend to be the worst, so be ready just in case. You may be thankful to have that Norco then but you also may not need it. Some people do great with just ice & Tylenol. I hope that is true for you.

Interesting about the tight fascia and great that your doctor had the presence of mind to release it so your blood vessels are freer/less constricted. I don’t think we’ve had an ES case w/ vascular symptoms where fascial restriction was the cause. It’s always been the styloids or calcified ligaments doing the dirty work in the past.

Please take it easy for the first couple of weeks at least. Listening to your body is VERY important. Rest when it tells you to. Overdoing will slow healing. We’re always here for you if you have questions while your healing progresses.

Merry Christmas, Happy New Year, Happy Holidays in general!

:grin:

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Thanks for the feedback. I am noticing more pain the last 2 days and a bit more today. Headache and pain swallowing are worse. I took a half of a Norco yesterday and it helped a bit so I have that when needed. And I’ve been using ice a few times a day. I’ve also noticed recently my taste seems off, kind of like a sour taste when eating food. At first I thought it was the food then realized it is me. I think others have said this happens after surgery.? …Dr. Google just said this could be a side effect of the antibiotic they gave me so maybe that is why.

Im trying to stay calm and be patient as my body heals and use this time to rest and watch some tv and movies.

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Hi dje1976,

Nerve healing is a slow process & sometimes symptoms intensify & new symptoms crop up as nerves repair (note your taste buds, headache & pain swallowing).

Recovery can feel like a 3 steps forward & 3 steps back process, BUT don’t get discouraged! Eventually, the tables turn & all progress is forward toward healing. Once I started to really feel things were moving in the right direction, it was the constant post op fatigue that plagued me. At two months to the day after my first surgery, I woke up in the morning feeling like my old self. It was fantastic!! I might have had that result sooner, except I have a hard time being still & tenuously jumped back into action two weeks post op. That was too early, & I believe it slowed the healing process for me.

Movies, books, board & card games w/ friends & family are good resources for keeping us still when we need to recover. A few short walks daily will also help to stimulate circulation & metabolism & also recovery.

I hope you’re able to enjoy the Christmas holiday time. Focus on your blessings from 2019 & those you hope for in 2020. A positive mindset goes far toward healing as well.

:blush:

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It’s not a bad time to be recovering, as long as you haven’t got to cook the dinner :poultry_leg::joy:
As Isaiah says, it will be ups & downs, but trust that your body is healing & that as nerves heal they can cause more pain, itching etc, so don’t worry that any worsening means the surgery hasn’t worked, it should all settle.
Hope you have a restful Christmas, & that 2020 brings better health! Thinking of you :pray:

@dje1976
I am 13 days post op from external surgery on the right side. I too have the sour taste symptom. Its like my tongue and the neck area under the tongue tightens up from the sour taste. A taste test with my daughter proved that it doesn’t take much sour taste (barely perceived by my daughter) to make me pucker. It eases up somewhat after each bite. Makes me wonder if its FBS.
BG

Hi BG,

Sounds like you have FBS symptoms w/ the addition of heightened sensitivity to sour. Interesting. FBS for me caused(es) my jaw muscles on the right side (no FBS on left) to go into spasm & causes an adrenaline response which makes my heart race for a short period. I grab my face & if I’m in the kitchen I hop around w/ my hand holding my face till the pain stops. Yes, I can be a drama queen :princess: :rofl: given the right motivation. :wink:

I hope yours passes quickly!!!

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Inflammation is still high (day 6 post post op). Trying to alternate ice and heat. The side of my face is tender. I’m hoping once the inflammation settles and as everything heals I will get more relief.

@BrooklynGirl
I am experiencing something similar, for me the sensation is along my jaw/masseter muscle/maybe under the tongue on the right side as well… it feels like it is tightening up and hurts when I take a bite or taste something. I guess I have FBS. Hope you get more relief every day (I’ll look for your updates, or feel free to post here how you are doing). Looks like you are about a week or so ahead of me.

@Isaiah_40_31, @Jules
Thanks for all the help and support. Wishing you both a Merry Christmas!!

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I am now at day 12 post op.

The good: I still have what I think are FBS related symptoms but seems to be getting batter. My right hand does not get as cold as it did before surgery. Swelling on my neck is getting better. I took a very short walk today with the dog, I’ve been taking it very slow, but I’ll try to be a little more active now. The side of my face is still tender around my jaw/masseter/cheek/ear but I think this is slowly getting better, I did not have this before surgery so I am telling myself this is the tissue healing.

The bad: Headaches got worse about 4 days post op and have had some bad days since. Pain is on the right side (same side as surgery) around the temple. This was/is my worst symptom and the main reason I had the surgery. Talking will make it worse and still eating soft foods. Food still tastes a bit sour (2 days since my last antibiotic med, I thought that might be part of the reason for the sour taste). Nausea comes and goes, sometimes worse after waking up in the morning or after taking a nap which is new. Tinnitus has not changed. Jaw muscles are still tight. Prior to surgery I was doing TMJ related physical therapy and stretches. I decided to put these on hold while my body was recovering. Not sure if I should continue doing these now or wait. Over a year ago I was diagnosed with TMJ disorder, I have seen several so called TMJ experts and tried EVERY TMJ treatment with little or no relief.

Trying to be patient about this. I know it can take time for the body to heal but was hoping for some more relief with the headaches by now. It is very frustrating to have to limit talking, good thing I’m an introvert :slight_smile:

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Hi dje.

I am 20 days post op on right side external surgery. I had the left side done 6 months ago. Having had the surgery before I know that it will take time. It was around the two month mark when I really started to feel better.

Yes, the soreness you feel is the tissue healing. The positive is that the surgery is done and the bone and/or ligament is out and wont cause further problems. I believe that the nerve issues will take time to settle down. Its the slowest part of healing from surgery.

I still have nerve issues from the first side but less and less. For the second surgery I too have a sour taste/FBS that seems to vary in intensity from day to day. The surgery pain this time around is much more painful because I am not as numb - like pins and needles ramped up. Topical lidocaine helps.

Walks are good. Keep at it as long as you dont over do it. All the best to you for a healthy and happy new year.
BG

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