I smiled for years, scaling healthcare companies across the US that I co-founded, motivated thousands of team members that joined me on my epic journey, and was known for my positive outlook on life. And yet, behind my big smile was a buried truth that I shared with only my family and co-founder - I was suffering with chronic pain and my body was incessantly screaming for relief. While others played, laughed, and enjoyed the simple things of life, I would fake my way through it. If it wasn’t for my family and faith, I am not sure I would have survived.
In 2013, a surgery went sideways, and the beginning of horrific pains associated with ES began.
I have tried just about everything except the surgery - my scans don’t reflect a significantly abnormal styloid (above 2.5cm), but the conditions and symptoms are spot on with everyone else’s.
This morning at 1am, I take my first step in posting to this forum and congratulating all of you for your contributions and support!
All of the successes in the world mean nothing if you can’t find relief with your health. Having said that, I do believe that owning your health is essential when dealing with chronic pain and I look forward to learning from this group and trying different approaches as I work with Dr. Hackman on a likely surgery.
Thank you again!!!
Glad that you’ve found us, & that your family and faith have kept you going, I’m sure that most of us are/ have been in the same situation so can empathise with you…
Very pleased that you’re seeing Dr Hackman, he’s done lots of successful surgeries for members! There are a few research papers mentioned in the Newbies Guide Section which state that the angle of the styloids can cause symptoms, not just the length, & the width can cause symptoms too; we’ve seen on members’ scans that sometimes the styloids can be really thick.
Let us know how you get on with Dr Hackman!
Welcome, @JBP! We’re so glad you found us. There is comprehensive information here about ES, as you’re discovering. You will also see that no two people experience exactly the same set of symptoms. We’re each “wired” a bit differently so the nerves/vascular tissues affected in one person can be different for another & even how the nerves react to irritation can differ.
I’m glad to know you’ve reached out to Dr. Hackman. He hd gained an outstanding reputation on this forum
Both for his surgical skill & for his compassionate care of his patients. I hope your appt is coming up soon so you can put ES behind you & start enjoying your life for real!
Hi JPB, pleased to meet you. Welcome to the club, its certainly helped me. Its great that you you can just carry on with stuff despite the pain. I cant, my concentration is just shot to pieces. I have been already diagnosed with ES but I am now awaiting a further appointment with a different more experienced ENT Surgeon (Mr Axon in England). My initial ENT Surgeon decided to abort my ES surgery after he had removed my Tonsils but that was as far as they got, but that’s another story. My ES symptoms came on immediately following Stomach surgery in 2013 but nobody so far has established a definite link. There might not be one, but I cant help feeling there is. Perhaps the stomach surgery moved something in my throat ?. I just dont know. Not sure if I ever will.
Anyway, good luck with your own investigations. Keep us all posted.
Only the ones who feel it that can understand how it is.
I really admire you for keep doing everything because my last 2 years were absolutely sad, as I focused on it everytime.
I hope the doc agrees that ES is the case and the surgery removes all your symptoms.
You may be on to something thinking about the stomach surgery connecting your ES symptoms. You probably had a breathing tube place down your throat during your surgery & the way it was placed could have slightly moved or irritated some of the nerves/soft tissues enough to bring them into contact w/ your elongated styloids which in turn started your symptoms.
Thank you, Jules!!!
I will have the scan done again to evaluate that clearly.
Thank you, Isaiah!
You are spot on - the pain and discomfort we all feel is individual and while there are some similarities, there are others very different.
Dr. Hackman is an outstanding MD! Looking forward to my next appointment with him in 7 days (am I really counting…well, yes :).
So sorry, Sparky, that you are going through this! My symptoms all started after an unfortunate tonsillectomy went sideways. Not a day has gone by afterwards that I have been pain free - almost 4000 days.
I hope you can determine what is going on soon and find relief too.
Yes, that is what I am hoping for too!!
Thanks Isaiah, Thats exactly what I have been thinking. It just seems to much of a coincidence. If it is the case, its probably not the fault of my Gastro Surgeon and its a difficult thing to prove anyway. its Probably more to do with me having calcified styloids and having unusual anatomy than any fault of the Gastro Surgeon . If I can get my ES sorted, I will let him know what has happened. Might be useful for him to know about. The actual Stomach op, was a complete success. A bit rough getting over it, but it has worked well ever since. I had Anti acid reflux surgery in 2014 (Fundoplication). Thanks for your input , much appreciated.
If you do ever get to the point of surgery (rolling eyes at the UK NHS system! ), it might be worth mentioning to the anaesthetist beforehand, given that intubation may well have triggered the ES symptoms…