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Eagle Syndrome - Online Support Group

First Timer Questions

It looks awesome. Just like pre op. Feels miraculous. I am left with a slight speech issue. You know, we’re the ones that notice small things about our bodies. Words that start with “cl” are hard for me to get out. It is what it is. Might still improve.

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Hi Abby4Paige,
We do live here in the suburbs of the Twin Cities so we really got lucky! Not a long drive at all. He is a riot and pretty straight forward with his answers. It is nice because he doesn’t beat around the bush. It is what it is and he told us he doesn’t operate on everyone too. My husband has been dealing with this for so long and seen every kind of doctor out there. Dr Ondrey is actually our 3rd ENT to visit.

He told us that he will decide after surgery if he will be able to go home or if he will be overnight. It will all depend on how he is doing. There is a bed reserved at the hospital in case he stays.

Yes, him going out of the country for that long is kind of nerve wrecking but I am sure he will give us a name of a college we can contact if needed. I planned on asking him on Monday when he does my hubby’s surgery. We are actually going to Regions Hospital to have it done. My hubby isn’t the biggest fan of the U since it is a teaching Hospital. I get it. Anything to make him feel better I will go with. ya know?

To answer some of your questions… he has seen Dr Ondrey 3 times now. Before that he has been seen by 6 neurologists, 2 gastroenterologists, 3 neuro surgeons, 4 different pain clinics, physical medicine (botox), chiropractors, accupuncturists, has had nerve blocks, been on just about every medication that is know to man, RFA of occipital nerve, trigger point injections, 2 ENT’s and a partridge in a pear tree. :rofl: So he has kind of been through the ringer with doctors. Our doctors have been from just about all over - from the Mayo, Fairview, Health Partners, TC Orthopedics, Entria, to the U of M and the list keeps rolling. Joe (my hubby) has enlongated styloid processes at 38mm on both sides. His right side is his problem child.

When is your surgery? Are you having your at the U or Regions? It is crazy that you are having yours done with him sounds like the same week as Joe is! I will pray for you during your surgery and for a speedy recovery!!!
Malia

beane & Abby4Paige - I don’t know if you realize that you can have private discussions by clicking on a person’s screen name. This will take you to a page w/ a link that says “Message” if you click on that you’ll be able to privately email each other w/o it coming up on the forum at large.

I’m so happy for both of you that you’ve found Dr. Ondrey & have surgeries scheduled (beane, for your husband). Abbey4Paige, you asked about how long before you can go back to work. Some people are able to start working again a week post op but for most it’s 2 -3 weeks. By 6-8 weeks post op, you’ll be feeling pretty decent all the way around. Your energy will return & you will find you’ve resumed many activities you let go pre-op. Six months to a year post op will give you a very clear picture of which symptoms are gone & which are there to stay. CAVEAT - if the ES is bilateral, you’ll most likely need both sides taken care of to get the optimal results from ES surgery. Most doctors require two separate surgeries in bilateral cases.

Hoping & praying for the best for both of you!

I was only doing voluntary work, but I did have to lift toddlers about alot, so I took 4 weeks off- lifting does really mess you up, but if it’s a desk job most people take 2-3 weeks as Isaiah says. After my 1st surgery my neck was painful to turn, so I coukdn’t drive for 3 weeks, but I had no problems with that after the 2nd surgery! So it does vary & we’re all different.
So soon! That’s amazing, I’ll be praying for you, hope all goes well! Let us know how you are when you’re able :bouquet:

Thank you everyone for your thoughts as I go for surgery tomorrow morning. Today has been a challenge and it’s only 10:30am. My nerves are getting the best of me, trying to cover back up plans for my job while I am out. I am a little OCD about procedures, so I have many sticky notes around my office and “how to guides” for those who are covering for me. I run the testing center at a college and next week is finals so being gone is not sitting well with me. I know it will be fine when it’s all said and done. beane - that is wild that Joe is having surgery next week. I will be at the U for my surgery. I will definitely be praying that he has the best outcome possible!

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Hi Everyone,

Hope your all doing well! I’m about 3 weeks post-op and I’m happy to report that my unsteadiness/wobbly sensation has improved although it still presents itself if I do to much activity, under stress, or hunger kicks in!

My head pressure that I constantly had prior to surgery is no longer an issue so I think I can cross that off my list! And the post-op crunching ear sound went away.Hooray! :smiley:

Now, for the bad part, my intense ear pressure/popping problem is back along with my face pain, and my left TMJ joint slightly pops all day again. Ugh, just when I was gaining some hope that I might get rid of these very comfortable long standing persistent health aliments! It’s torturous! :weary: I’m praying that maybe it will improve with more time & healing and perhaps caused by the remaining 6.5cm styloid on my right. Please God let that be the case and have mercy on me!!! :pray: :pray::pray:
My second surgery with Dr. Samji is on July 29th. Continued prayers and support is much appreciated!! :innocent: Thanks (((Hugs)))!!

You may find comfort in the fact that I had terrible left side pain. My styloid was very thick. After it was removed, i felt better but at about 2 months my ear pain and some jaw pain and especially pain in the back of the skull reappeared. The ear pain got a bit better by six months but not the overall neck and head pain. I am 2 months past the second side. The surgical pain and head pain and ear pain are better on both sides. I got some first bite syndrome on the right side and facial nerve paralysis from the surgery, but it is oh so slowly improving. My lower lip extends over my lower teeth when I try to open my mouth so it is difficult to eat sandwiches, but that should go away in time. I am seeing a facial nerve therapist associated with my surgeon. The facial nerve near the mandible was the most affected, but it is showing improvement.
What is still unknown is the pain in my shoulders and neck up to the base of my skull where the trapezoid muscles form. I think some of it will improve as I am now able to lie down at night. I have needed to sleep sitting up for most of 4 years. So my neck is just beginning to get some relief. I will be going to therapy for my entire spine soon and that therapist is more optimistic than I have been. I know to wait at least 6 more months because my body needs time to adjust to the freedom of having my styloids and stylohyoids removed from the base of my skull to the hyoid. That is like removing something that was strangulating me for years.
My muscles and vertebrae have been compensating for years to having my head pulled down. That is how I am viewing the recovery. I hope this helps while you wait for your second surgery

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Glad that some things are improving…totally agree with emma that time heals & patience is needed, plus getting side 2 done! Will keep praying for you :bouquet:

Christy -

There is a good chance your renewed/current symptoms are related to the styloid/ligament that is still there. Your jaw is now “liberated” on one side, but the other is still “locked down” so the free side is having to compensate for that. Trigeminal & glossopharyngeal nerves can get very irritated when a jaw joint isn’t working right thus the facial pain you’re experiencing. I speak from experience on that.

July 29th will be here soon! Take it easy, listen to your body, & rest when it says to, & you should continue to notice improvement from the first surgery as the days pass.
:heart:

Let’s both make a pact not to analyze too much until months after our second surgeries. Sound good? :purple_heart:

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Hello

Thank you all for your encouragement and helping me find some comfort through my discomfort! I hope I’m not coming off as complainer! If so, I’m sorry. I will try to be more optimistic and remind myself that I need to be more patient! I’m really looking forward to my next surgery even though I’m in midst of a rough recovery! @Isaiah, I think your on to something about my remaining styloid being locked down while the other side is free/untethered! I sure hope that’s the case! Thanks for all the prayers and support!

@Sewmomma, sounds good! It was so disappointing to feel the old symptoms come back with a vengeance!! Moments like this is alI to familiar, deflating, and sets me back! It reminds me when I recently got my wisdom teeth extracted and when the swelling went down I felt so much worse and had even more symptoms! My poor body has been through so much and it just wants a break! If and when that happens I’m gonna throw the biggest party ever or hop on a plane for an extended family vacation in Hawaii!!
:grinning: :cherry_blossom::beach_umbrella:

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See yourself there at that finish line! All of this is temporary! Hawaii sounds like a plan! My go-to image is purchasing a bike and riding around my neighborhood. :biking_woman::rainbow::heart:

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That sounds nice too! I miss riding my bike! :slightly_smiling_face: :biking_woman:

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You’re not a complainer! It’s a frustrating & scary process & we all need to get advice from others through it!

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Hi All,

I’m feeling so defeated by the pain right now! :pensive: It’s been going on 24/7 for many days!
So, I’m officially 1 mth post-op and while my intense head pressure was successfully treated by the surgery it has done nothing to relieve my ear and jaw pain problems! It almost feels worse now than before the surgery. It feels as if my jaw and TMJ are misaligned on the surgery side and it pops and shifts back into place all day long. It also feels that my TMJ joint has been pushed higher and the bone protrudes out further than the other side. I believe this is causing a lot of my ear pain/popping/pressure problems. If it’s possible that my left TMJ joint could have been shifted higher, I sure hope the second surgery on my right will correct this!! Apart of me wants to run to a dentist tomorrow and see what they think but apart of me says it will be a waste of time and money! I guess I’ll just have to deal with this misery and wait it out till the second surgery but 2mths of this pain is going to kill me :tired_face:

Perhaps, frequent very gentle massages would help? My neck muscles are pretty tight and I have a lot of numbness still!
My incision looks pretty good but there’s a hard lump underneath. It doesn’t seem to be going down so I hope this isn’t built up permanent scar tissue!
Ok, I’m done ranting. Thanks for letting me get that off my chest! :triumph: Time to put my analytical brain to rest! Goodnight :sleeping:

Sorry that you’re in so much pain still, Christy… I guess you just have to keep plodding on, until you can have the other side done. Hopefully things will be realigned after that & less painful. It’s good that the head pressure is easier!
Keep strong, & feel free to vent on here any time you need to…a big hug for yiu & will keep praying for you :bouquet:

Dear Christy,

My heart goes out to you! I’ve been there. The symptoms from my remaining styloid got worse & worse as the post op days wore on after my first surgery. Hopefully you’ll find that there are better days ahead. Usually the symptoms come intensely for a few days then let up some so there’s respite. I’ll be praying that your respite days are on the way.

I truly believe you’ll see a HUGE difference after your second surgery. Your calcified s-h ligament still has half your jaw tethered, so it can’t move normally. That is putting a lot of stress on the side that has been released as it’s trying to behave normally but can’t so it’s compensating which creates pain. TMJ issues then refer to the ear & voila there’s more pain added to an already uncomfy situation.

Keep yourself as busy as possible, to the extent your body allows, & the next 2 months should seem to pass fairly quickly. You’re half way to the finish line!! :clap:

Isaiah_40_31 - I don’t think I can read enough times how the stress of one side being removed and one tethered can cause discomfort (to say the least). I encourage you to keep reiterating it - please:)

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Thank you, sjlash. Glad to support our members however I’m able! I’m so glad you’ve benefitted as well! How are you doing?

:rose: