Hello!
Allow me to introduce myself. I’m Pete, a 37 year old male and I recently found out I have ES. Before I go any further I wanted to say what a wonderful community I’ve stumbled on. My Internet research of the condition and the surgery led me here and I just want to say that my heart goes out to each and every one of you. I can’t imagine how frustrating it was for those who struggled with the pain and/or getting a diagnosis. It seems that this community has really helped connect people going through similar things and helps provide emotional support as needed.
I have been dealing with pain when I swallow liquids since July 2019 and finally got in to get it checked out. My ENT did the visual scope and could only see an enlarged area on the offending side so ordered a CT. The CT showed him the telltale signs of ES. He doesn’t do the surgery so he referred me to a colleague who does and I had a consult with him on 12/16. He walked me through my CT scan and what the surgery entails and recommended the external version if I go forward. He also said he runs a verification test where he injects lidocaine into the area and if the pain subsides it’s a strong indication of ES. I “passed.” It’s a relief to know what is causing the pain but I’m now at the point where I’m contemplating the surgery.
The surgery part is the main thing that drove me to post on this site. Here’s where I’m at: I’ve found out what’s causing the pain, it is never going to get better on its own, and as I age it could get worse. (Ligaments don’t exactly get more elastic as you age, do they?) However, I feel a little embarrassed after reading some other people’s journeys as my symptoms, while painful (about a 6 out of 10), don’t impact my daily life to the extent of others. My rationale is that I’ve found out what’s wrong and the only way to get it fixed is through surgery, so I should have the surgery because the alternative is dealing with this for the rest of my life and perhaps the symptoms worsen. I’ve talked it through with my wife and she’s in agreement that it’s a good idea to have it done. I guess part of me wanted to reach out to a common group if only for reassurance that “pain is pain” for lack of a better way to put it. Thanks for reading and looking forward to the discussion.
Hi Peteness,
Welcome to this amazing, supportive group.
Surgery is a big deal. I just had my second external surgery 10 days ago. I did not want to have the second surgery because I had some crazy nerve issues post op on the first side. Once the issues cleared and I had a big flare-up on the remaining side I knew I had to get it out.
The ES pain definitely affected my quality of life but I could get through the day - it was always worse in the evening when I had no reserves left. Any exercise that affected my upper body were off limits as it made the symptoms worse - biking, swimming, lifting weights, tennis, etc, I cant wait to get back to my active life style!! It wont be long now. Yay.
You may find you can manage. I could until it really affected my quality of life. If that happens to you that may be the point when you decide. I am 20+ years older than you and age does make surgery harder to comeback from. There are many people here that had a rough go of surgery and the post op issues that follow, but most will heal and pass. There are also many people who have had the surgery and had no issues to post here.
Most importantly, trust your surgeon. Having him/her understand what ES is is the first step and it sounds like you are on the right track.
Thanks for the insight and hope your recovery is going well. I definitely trust my surgeon, he’s familiar with ES and also an effective manner in which to do the surgery. (i.e. risk mitigation to other structures) I guess I’m just trying to attack this from the mindset of “this is the problem and this is how it’s fixed.”
Hi Pete & welcome to the site!
Whether or not to have surgery can be a difficult decision- it’s not without risk, but usually people get to the point where pain & reduced quality of life means they’re okay with going ahead. Personally I had some pain, but bearable, so put off surgery for a year, but things worsened & I started to get vascular symptoms, so when I found out about an experienced surgeon on here, I went ahead with it, & feel tons better.
You can lessen the risks by finding an experienced surgeon (we have a list of doctors familiar with ES in the Doctors Info section, so you could check if yours is on there. Obvs if yours isn’t it doesn’t mean his no good, we just might not have been told about him!) Having external surgery helps lower the risk, so that’s good. You could also ask your doctor how much he’ll remove- if the styloids are taken right back to the skull base it’s good as what’s left can’t cause symptoms, plus there’s less likelihood of regrowth. If some styloid is left, it should be smoothed off, & the piece taken out- unbelievably some doctors have just snapped the styloid & left it in to still irritate structures! If you have calcified stylohyoid ligaments, then these need to be removed too. You should also check if nerves are monitored during surgery, as this can ensure nerves aren’t stretched too much.
Other questions to ask are does he use a drain or prescribe steroids for swelling- not that I woulfn’t have surgery if they didn’t, but it can help with postop swelling. It’s interesting to know what doctors suggest for how long recovery takes- some doctors don’t realise that recovery can take a while.
It sounds like you’ve been reading up; there are lots of post-op recovery stories on here that you can search for, so you can read up on what to expect if you’ve not already done that, although it does vary hugely! Some members have gone back to work in a week or 2, others have not felt back to normal for a couple of months…
But as you & BG has said, recovery can be harder as you get older, plus there’s the possibility that the longer the SPs are left irritating nerves, they could cause permanent damage.
Good luck with your decision!
I agree with all of the above & would only add that, in my opinion, getting the styloids out sooner than later may save you larger problems they might cause in the future. It (they) will keep growing &/or your stylohyoid ligment(s), if involved, can continue to calcify & thus symptoms can progress.
I was not symptomatic until both of mine were pretty long & the ligaments were partially calcified. My surgeon would not do bilateral surgery in one fell swoop & required a 6 month wait between surgeries. It ended up being more like 9 mos between mine, & by the time I finally had the second one, I was in dire straights from the pain & other symptoms it was causing. The elapsed time between my diagnosis & final surgery was about a year.
Please don’t take this as me saying you better jump on it, but do consider the possible consequences of waiting till you’re desperate.
But I do have an odd question you can ponder … and one that may help, maybe, hah?! I think in hindsight having had surgery myself it can make ya think a bit about it. Do you have a potentially stressful event coming up? Anticipating any big changes in career, family, life? Is your body particularly sensitive to stress, illnesses, or changes like mentioned above?
If yes… I mention it because my ES pain was definitely exacerbated by stress, a big transition, and issues going on around me. Maybe it was me clinching my jaw or posture, maybe it was the anesthesia I had months prior, maybe it was coincidental, maybe it just got worse on its own, or 100 other things… BUT I have seen quite a few posts that suggest the pain can become worse and harder to manage when there is “a lot going on” (Defined many ways) around us.
For me, if I could have managed the pain and/or removed the stress from my life (to see if that helped any) I would have delayed surgery. But with the compounding stress and the pain for months and months, it was too much to handle and surgery became a must.
So in hindsight…
I am the type of person that likes to have a planned surgery, on my timeline (mentally and physically and ummm financially ) instead of an emergency procedure. I do not like the fact that my surgeries (I had 2 for eagles) felt emergent. They were very disrupting. I couldnt find a dr fast enough. I would have much preferred to do the grind of finding my care and scheduling a surgery before the pain was unbearable and have more control over it.
Since you never know when stress etc will hit that’s the other question to ponder… do you prefer it to be planned and at a pace you can somewhat control or are you ok if it gets more emergent and you find it may be harder to cope daily with some of the symptoms?
Hope that helps. I have post surgery guilt. It’s a mom thing maybe lol. But I’ve thought about this a lot. And I can’t go back, but have decided I did the best I could with the knowledge I had at the time. Just know self-care is vital and may = surgery!
Thanks for all of the insight everybody! I hope everybody had a good holiday.
Naturally, after the lidocaine shot I’ve been feeling pretty good. It really only hurts when I yawn. I’ve heard that the lidocaine shot can provide relief for weeks or months. Is that accurate? That said, I’m sure the relief is only temporary. After some more discussion with my wife and family I am confident in my decision to move forward with the surgery. I found out today that the earliest I can get in is February, which is fine really. I’ll find out more after the first of the year. I guess I was just a little worried that I was being too simplistic in getting something fixed that’s wrong with me, no matter what it is. Problem, meet solution.
To answer some questions: my surgeon uses a drain post surgery. The nerves are monitored.
Great news about the lidocaine injection, peteness!! I do hope it lasts for months. For some people it lasts for hours or doesn’t help at all so you’re experience what’s hoped for.
Glad you’re going ahead with the styloid removal. Recovery takes time but it’s worth it in the end!
Thank you for writing about the timing of surgery. I am going to reschedule mine, I don’t have enough information from the surgeon and that stress alone will just make things worse! Thank you!
) instead of an emergency procedure. I do not like the fact that my surgeries (I had 2 for eagles) felt emergent. They were very disrupting. I couldnt find a dr fast enough. I would have much preferred to do the grind of finding my care and scheduling a surgery before the pain was unbearable and have more control over it.
