Preparing for the big day - Dr. Hackman

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I am sitting in my hotel room in N. Carolina and reflecting on the events that will transpire in the next 2-3 days at UNC (Friday at 7:30a). My journey has taken me down many paths, more time and money than imaginable too, as I tried to find solutions for my undiagnosed and unusual acute pain.

And here we are - Dr. Hackman will perform the bilateral ES procedure and I, like many others, am hoping for complete relief!

Thank you all for your support!!! I am not sure if it has been compiled, but do we have one post or link to visit for all the do’s/don’ts for pre/post op recommendations? I have noticed many differing ideas, but it sure would be nice to have a centralized location to access all of the ideas versus searching for weeks through the various posts.

JPB

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Happy healing … get well soon

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It’s crazy for me to think that I was were you were right now. Knock on wood that was the worst part the anxiety and anticipation of the wait leading up to the date. At that point I was like just make the pain end please!
I like you and many others have endured years, countless Drs, money spent, had been left with nothing, no answers. Only thing I ever ended up with was new or worsening symptoms, and loss of friendships because people just don’t get it. Like we’ve all talked about on here if people don’t/can’t “see it” they don’t understand or get why we are not well.
This will soon be over and behind you, I pray!
It is beautiful there in Chapel Hill, especially this time of year so hopefully you and your wife can get out and about a bit and enjoy the country side. That would also help to keep your mind busy and a bit distracted. I know I made my husband drive around a bit so in could get some nice fall foliage photos. : )
Anyways again super happy for you that you day is coming!
Remember ask for the bilateral ice pack in recovery they don’t have these ice packs on the main floor. This will be your best source of pain relief. And honestly your best friend. Lol. Keep your head elevated. And eat soft foods or whatever is tolerable for you/your jaw drink all the drinks! Fluids are super important. Freddy’s in NC has delicious custard milk shakes, made with fresh fruit I had one of those for my lunch one day : ). YUM! Ask your hotel for extra pillows and locate the nearest ice machine location because you will want / need this frequently to fill up your ice pack when you get Out of hospital.
I don’t know of a certain section on here for post op other than searching which is what I did. But those few things above I mentioned are the things that have helped me the most.
Take good care!!!

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Hi @JPB,

All the best for your upcoming procedure tomorrow. Hope that everything runs smoothly for you and Dr. Hackmann. I’ll be thinking of you and sending good vibes.

Warmest regards :crossed_fingers: :crossed_fingers: :four_leaf_clover:

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Wishing you a successful op & a good recovery. Sounds like you are in hands of a great surgeon. Good luck! D

Ps. I agree collating key stuff/top tips from threads is an issue. Search function can help. Not sure how can tackle collating stuff. D

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We have a surgery shopping list which a member did, & that covers ideas of what to get in ready for surgery, if you search for what to expect after surgery then it’ll come up with a few discussions…it’s difficult to summarise it too much as people’s experiences are so varied!
There are some tips in the Newbies Guide Section about surgery:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And the shopping list:
Surgery shopping list - General - Living with Eagle
Hope that surgery goes well & resolves your symptoms, will be thinking of you & praying for a good recovery! :pray:

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Thank you!!! I will definitely try the recommendations you provided (Freddy’s).

I sent this to a few dear friends who were praying for me and I thought I would continue to be vulnerable and express my thoughts today while I reflected on my upcoming surgery on Friday.

Thank you for taking time to share this with me!! I love that saying about God being there for us, today, tomorrow and forever!!

There are a lot of people cheering for me through this process and I appreciate all of their support.

It’s been a long journey - one full of pain and agony, begging and pleading for a relief that never came, wishing and hoping for some answer. And here we are - I believe this is it!! I have prayed more fervently than ever before for an answer, and my spirit was lifted with assurances that something will take place allowing for my healing. Will it be completely easy and no discomfort or apprehension as I approach the date - probably not. For all those that experience a surgery of this nature, it is inevitable to feel that way. But, I can continue to return to what I felt and hold strong and fervently to a brighter future.

I used to wish in my worst moments of pain that if I couldn’t be freed of it, I could pass and find respite. Those fleeting moments never lasted long and didn’t persist when I was around my children and wife - I would suffer forever with life long chronic pain (in all it’s nauseous and agonizing ways) if it meant I was able to be with my family a little longer.

I have much more to do during this mortal journey and it starts again on Friday at 7:30a in the capable hands of my surgeon.

Thank you for your love, understanding and compassion!!

Thank you all for continuing to messaging me - I appreciate it!!

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Thank you!!!

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Thank you!

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So good to know there are some items consolidated. I will review those tomorrow.

BTW, does anyone know if you are supposed to shave for this prior since I haven’t received instructions indicating such?

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If the surgical team finds any hair interfering with the procedure, they will shave it precisely where it needs to be shaved (though I guess they might have problems with long beards).

But in general, the facial hair is allowed to be shaved up to one day till the procedure, if I have heard it correctly from other sources and remember well from my own “adventures”.

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God Bless You. I thank you in advance Father God-for complete and total restoration! In Jesus Name

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That is good to know. I trimmed my beard to make it easier but don’t normally shave completely due to washing. Thank you!

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@JPB - You wrote your sentiments so beautifully. I was very emotionally stirred as I read your words. You aren’t the first person to feel like death would be the only respite from the pain & symptoms of ES. This syndrome has been called the “Suicide Syndrome” for obvious reasons. Sometimes God has us take the “hard road” to keep us looking up, leaning hard & continuing to trust Him. I’m very thankful He gave you a wife & children to be your anchor during this really tough journey. They will be there for you on the other side of surgery as you recover & your life is gradually restored. What a blessing that is!!

I am praying & will be praying for you & Dr. Hackman, especially on Friday.

:hugs:

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I second that- both of you are speaking far more eloquently than I could! :pray: :hugs:

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@JPB Thank you for sharing this. It got me a bit emotional as I felt all that you said. I could however never express it as well as you did. Continued prayers my friend. :pray:

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@JPB you indeed spoke for all of us so elegantly put. I wish you uneventful operation and good recovery afterwards but most of all, I wish you a lasting resolution of your agonizing symptoms.

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Thank you all for responding! I enjoyed reading this tonight!!

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I remain awake, staring at the white wall of my VRBO room with my wife trying to sleep as she prepares her emotions for tomorrow; my children texting me from different areas of the country as they worry about how I will fair in my 7:30a EDT surgery.

My thoughts speed through the 3000+ days of torture, and I land on the hope that my wife and I always carried that my pain would eventually subside. Some days better, some days worse, but always the incessant reminder that I had something that no one could figure out.

Thank you for this forum and the opportunity to connect with many of you. I don’t always respond to everything shared, but I have read comments here and there since finding this site and been uplifted in some fashion in knowing there are others experiencing the same things.

I know there are risks and I worry about those, but I also know I have tried a lot already and my path brought me here.

Regardless of the outcome, I am grateful to have options. Having nothing more to do removes any chances of maintaining long term hope and that is where I found myself this past year. And yet, I kept inching forward, clinging to the belief that something could and would work.

So, here we go. I am signing off for now and will see you on the other side (alive and well :).

One final thought. My wife and I were invited to lecture at a university awhile back about our entrepreneurial journey. It was there where we met a young talented student who had all the reasons to succeed in life. And yet, he too was silently suffering. A few months ago, he called me after learning about my vulnerability in sharing my healthcare challenges with a larger audience. After some longer discussions back and forth over the weeks that followed, he had tests done only to realize his styloids were almost 2-2.5 times the normal size. In 1 week, he will have his bilateral ES surgery with Dr. Hackman and believes that his life (in his mid 20s) has a bright renewal.

Why do I share this? I recall the words of Jacques Lusseyran from “And There Was Light—the memoir of a blind resistance fighter in France during WWII”. Jacques’ two fundamental truths resonate with my own. “The first of these is that joy does not come from outside, for whatever happens to us it is within. The second truth is that light does not come to us from without. Light is in us, even if we have no eyes.” My pain was a time of great enlightenment and it opened opportunities for me to bless others through remaining positive, never giving up and even in the case of this young man, being a guide for him to find a solution to his condition.

Never underestimate our ability to momentously change the world, even if we are crippled with something we don’t understand and until t minus 7 hrs., had a chance to finally be freed from.

With much love and sincerity,

JPB

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JPB today is YOUR day! Been thinking of you! Praying for the relief you much deserve! Can’t wait to hear from you when your able/ready!

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