Bilateral Eagle Syndrome Extraoral Surgery #2 of 2: 1 WEEK POST-OP UPDATE

Hey all,

So as I mentioned previously, I have been in two car accidents since surgery #1 (neither of which were my fault & thankfully each insurance company felt the same way once the dust settled)... Accident #2 unfortunately totaled my vehicle, since that time I have been DESPERATELY trying to replace my VERY hard-to-find vehicle & I was finally able to complete that process today (albeit while still in the "healing" process following surgery #2 of 2). The entire thing was a miracle as far as how I found/obtained my vehicle, but that's another story for another time. Nonetheless, things have been soo hectic ever since surgery #2 of 2 that I was unable to get back to you all until now (exactly one week after this second [& hopefully FINAL] surgery). So my apologies once again, but i'll take a few moments just to share what I can as far as how things are going at this point (visit http://forum.livingwitheagle.org/forum/topics/bilateral-eagle-syndrome-extraoral-surgery-1-of-2-30-day-post-op for my previous discussion that was posted in the days leading up to this second surgery).

As mentioned before, everyone is different, so I obviously can't tell you how you will react to this procedure (whether you have one or two surgeries)... All I can do is share what my experience has been in hopes that you can have some type of idea of what to expect. In regards to this second surgery, I can honestly say that it has been quite a different experience compared to the first. I must admit that on the day of surgery #2, the pain that I was in during the hours that followed surgery was excruciating... I mean, I was in some pain during the hours that followed surgery #1, but not as much (and yes I was on the same Oxycodone meds prior to going home). Oddly enough however, this is not the only thing I noticed that was different... I also noticed (on the bright side of things) that I did not have that same type of "pressure" in my temple running down to my lower jawline. It was still difficult to lean my head back/forward, but not nearly as difficult compared to the 1st time, & turning my head to the left or right was easier as well. Altogether, what I have noticed is that the pain has been far more "focused"/short-lived this time around, where it has been pretty much only at the incision site & internally (presumably in the area where the styloid had been making contact before being removed).

I have experienced NO "first-bite" syndrome this time around (last time I suddenly had it for like a couple days after which point it faded). I also have not thrown up at all this time (possibly due to the anti-nausea medicine suggested by a buddy on here [Isaiah 40:31 :-)] &/or me not eating anything until the Oxycodone was out of my system that next day). BTW- I only took the Oxycodone that 1st day, after which point I switched over to Aleve for a couple days as I just didn't want to get too caught up on meds.

Last but not least, the wound somehow seems to be healing TWICE AS FAST as it did the first time, with the associated swelling going down SUBSTANTIALLY (in a period of one week as opposed to a period of two weeks), the "stinging" related to the skin bonding together at the incision point has started MUCH sooner this time & it has been very mild... Crazy part about this is the fact that I haven't done much differently this time. Can only give God the credit for that right there, in addition to all of you who have been PRAYING for me (thank you so much for doing so :-). I can say that my diet has been VERY strict & I think my diet has also played a major role in how fast i'm healing up this time (CONSISTENLY high protein, low-carb/low-sodium, moderate to high healthy fats, frequent leafy greens, moderate to high fiber & LOTS of water): This type of diet seems to keep inflammation at bay (in my case) & I truly believe that combining this type of diet with a moderate calorie intake of 1200-1700 calories a day is one of the best ways to heal QUICKLY. One more negative difference, however, would be that as of today, my throat is still sore internally (similar to how it had felt many times when the styloid was still in there) & i'm just praying that this internal soreness eventually fades away.

Thanks to the overall healing process moving so much faster, I left my parents house to go home the day after surgery (if my memory serves me correctly), & the first time around it took me about 4 days before I could go back home. Part of that probably had to do with the fact that my laptop charger crapped out on me this time and i'll go crazy without internet access, but yea lol (I was actually still trying to find another vehicle to replace mine that had been totaled, so it was kinda important that I get back to home base once I noticed that my laptop was no longer charging).

When it comes down to similarities, I do unfortunately have that same type of "numbness" along my jawline (now on my left side), but seemingly no nerve damage &/or crooked smile. Hopefully the numbness will eventually fade on both sides. Also, that issue with my tongue clapping against the "arch" at the rear roof of my mouth is still there, so i'll have to address that sometime on down the line. Aside from that, I can say that this surgery was quite different from the first. In regards to the greater amount of pain on day 1, I believe that much of this had to do with the fact that my doctor is right-handed & as a result, he stated that he had to twist in abnormal ways to get in there this time around. When I find it, i'll attach the picture of the removed styloid from this side & you'll see that quite a bit more flesh was on there: Wild guess, but that might be why my inner throat is still sore right now (a week after this second surgery) whereas my inner throat was hardly sore at all a week after surgery #1. We'll see how it pans out though...

With all of that being said, here's a quick breakdown of the differences I have noticed this time around:

-Excruciating pain on the day of surgery, much more painful than surgery #1

-I did not have that same type of "pressure" in my temple running down to my lower jawline.

-Initially had a very stiff jaw & same "crackling" in ear area (where the jaw meets the skull), but both items faded in days this time as opposed to weeks

-Pain has been far more focused this time around, where it is pretty much only at the incision site & includes internal soreness in the throat

-No first bite syndrome this time around

-No throwing up like last time

-The wound somehow seems to be healing TWICE AS FAST as it did the first time, with the associated swelling going down SUBSTANTIALLY (in a period of one week as opposed to a period of two weeks), the "stinging" related to the skin bonding together at the incision point has started MUCH sooner this time & it has been very mild

So there you have it! Hopefully i'm not speaking too soon, but at this point I think it’s safe to say that my Bilateral Eagle Syndrome Surgery #2 of 2 was a success! When I think about how worried I was as far as being able to get the surgery scheduled/completed by a certain time/etc, i’m just so grateful & blessed to know that this is FINALLY behind me (as far as both surgeries) & I can now prepare to begin the next chapter in my life (whatever that may be). I'll be monitoring my progress over the next few weeks & report back with anything that I feel might be important for you guys to know. Aside from that, I have my follow-up appointment with my doctor next week & i'll be sharing this same information with him at that time (along with any new “developments”).

OH YEAH: For those who have been asking, I used Dr. John Milligan out of AOC Physicians & he is honestly one of the most caring/compassionate ENT doctors I have ever come across (i'd have him as my primary care physician if I could)! Unlike so many doctors I have come across over the years, Dr. Milligan takes the time to listen to you, he takes notes while you talk to him, he doesn't "rush" you through your doctor’s visit after waiting weeks to see him, & he truly seems to care about your comfort, your healing & overall well-being as if you were part of his own family. Working with him has been such a blessing, & I truly believe that ending up in his care was no mistake. At first I was hesitant to use him as he only does the surgery extraorally (& I didn't want the related external scars), but let me tell you that the 1st scar is ALREADY barely visible (now roughly a month & a half after that surgery) & I owe much of this to how much care he takes when it comes down to placing the incision (he takes the time to carefully observe the layout of your skin & places the incision in a position that allows it to blend right into the natural lines in your neck). Some doctors will just slice you up any kind of way as long as they get their check, & you walk off looking crazy for the rest of your life, but with Dr. Milligan you can rest assured that he will NOT leave you hanging like that. The way things are going right now, I expect both scars to fade almost completely in a matter of months, & in consideration of what I was so worried about, I couldn't ask for anything more. I will start a separate discussion thread in the future that will present pictures of both scars after a few months have passed. For anyone who wants to contact him, Dr. Milligan’s info is as follows:

Dr. John M. Milligan, MD

AOC Consultants

2222 East Highland Avenue #204

Phoenix, AZ 85016

Phone: (602) ■■■■■■■■

http://www.aocphysicians.com/

I'd like to thank each & every one of you for all of the help, kind words, prayers, love & support, & if anyone needs ANY of the above from myself please don't hesitate to contact me! I'll check in as promised/as time allows & i'll try my best to browse through some other discussion threads to see if I might be of assistance to someone else who feels the same way I felt only a few short months ago (alone, lost, depressed, discouraged, scared & defeated over this condition we call "Eagle Syndrome"). I'm not 100% "out the woods" yet guys, still have quite a bit of soreness in my inner throat (which was not the case a week after surgery #1), but instead of worrying i'm continuing to pray that it gradually fades away & things can finally be back to normal. I will make sure to let you all know the end result, however it turns out. Thanks again guys & have a great night!

-eaglewontbeatme

SPECIAL THANKS TO: Isaiah 40:31, heidemt & shoppergirl, 3 people who have CONSISTENTLY checked on me, sent messages, prayed for my recovery & truly cared about my well-being when they absolutely did not have to... You all have been such a blessing, I appreciate you more than you will ever know & I pray I can meet you all face-to-face one day soon so we can all go out to breakfast/dinner or something once we are FULLY recovered (I mean that too, let's set a date :-)

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great news, hope you'll soon be back to singing and getting on with your career!

God Bless,

Jules

That’s fantastic news! So happy for you. Hopefully, this is the beginning of great things to come.

Thank you so much for sharing your story! I found this website just the other day and reading what you wrote gives me great hope!

So excited for you!!! Thanks for sharing...I know great things are coming your way!!!

I'm so happy to hear your good news. I hope the rest of the recovery goes smoothly. It's so great to hear stories with positive outcomes. Thanks for telling yours.

You are an inspiration! With this condition, you have to fight just to get diagnosed and then keep fighting to get treatment. And you have to do it all in the midst of chronic pain. God only knows how hard you've worked to get this far! Continue to heal and improve!

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Hi eaglewontbeatme! I just found your post. Alrhough I know it was written several months ago, I hope you will receive this. How are you feeling? How was your recovery? I am meeting with Dr. Milligan in a few weeks and feeling nervous. As it sounds like it has been for many members, this journey has been so scary. I do not have a diagnosis and it isn’t showing in a CT scan I had in July (they were looking for “infection,” but my symptoms fit the bill completely. Were you happy with the results from your surgery with Dr. Milligan? Do you feel back to normal? Was he able to diagnose uou because it was obvious on your scans? I hope to hear back from you… and I really hope this post finds you healthy and happy and symptom free!!

@eaglewontbeatme I would love to hear how you recovered from your surgery! I’m not sure if you saw my previous post asking you about Dr. Milligan? I have an upcoming appointment with him and wondered a few things. Was your calcification seen easily on a regular CT scan? Did Dr. Milligan diagnose you or had you already been diagnosed when you met with him? I still don’t have a diagnosis. I have had a CT scan done but it was ordered by an infectious disease doctor who was looking for a mass. No mass was detected and there was no mention of anything else! Since then, I have met with a neck surgeon who mentioned there is a lot of calcification in my neck. All of my symptoms fit the bill… I am nervous about seeing another doctor, as I have seen so many and they haven’t been able to help. I just wondered if you were satisfied with your recovery and if you are feeling back to normal? I hope so! Please let me know when you have a moment. Wishing everyone a happy and healthy Thanksgiving!

@AshleyF - Eaglewontbeatme hasn’t been on the site since recovering from his second surgery (early 2015). I’m only telling you this in case he doesn’t reply so you don’t feel discouraged. I have emailed him privately & gotten no response either. He gave Dr. Milligan rave reviews at the time of his surgeries so I encourage you to see him and at least get his opinion. I think EWBM only had a regular CT but it’s been awhile since I read his old posts so I could be wrong. ES is easily diagnosed using just a regular CT scan. That’s all I had. Dr. Samji did my surgeries.

Hope this is helpful. :slight_smile:

Hi i know im late but was wondering in your last update you still had throat pain like when the styloid was still in there. Has that gone away since surgery 2?

Throat pain post op is not uncommon for 2 reasons: first, if you have external surgery, I believe a breathing tube is used, & that irritates the throat; second, if your throat was sore before surgery, the nerves that are irritated take some time to settle down post op. There are people who have instant relief once the styloids/ligaments are shortened/removed, but it’s far more common to have a sore throat for a bit after the surgery.

Wow , so happy to hear you have had both surgeries and are on the mend. Your experience seems to have been positive.wishing you continued success.

Thank you, Emery! I had my first surgery in Nov. 2014 & my second in Aug. 2015. I still have some minor residual pain, but it’s barely significant compared to when I had full blown bilateral ES. As you have seen. I’m a great advocate for having surgery when the pain is unmanageable by other means.

:slight_smile: