Hi, all! I met with Dr Hackman this week and he was as wonderful as everyone says. I’m so glad I found this forum who suggested him! He recommended a bilateral styloidectomy and stylohyoid ligament removal.
I’m feeling very unsure about whether I should do the surgery or not and would love thoughts/advice from those who have been through it, especially with Dr Hackman.
I feel very lucky that my symptoms seem moderate compared to most that I hear about in here. I have pain in my throat, ear pain, tinnitus, and occasional swallowing pain. Overall, it doesn’t stop me from living my normal life. It is uncomfortable though and some flares are worse than others.
I’m worried that the surgery feels too extreme for my symptoms. But I also wonder if maybe I’ve just lived with the pain so long that I’m used to it and if I were to have surgery, I’d realize how much better I feel and how bad it really was. I also live 40 min from Chapel Hill and feel lucky to have Dr Hackman close. I worry if I decide to wait a while, I could miss my opportunity to have it done with him and then it would be much harder to manage.
Overall, I’m just scared that the surgery could end up causing worse issues or pain than what I’m currently dealing with. But I also don’t love living with this pain.
As you can see, I’m very conflicted. Any advice is appreciated!
There are risks with the surgery, so you’re right to take your time to decide if it’s right for you. For most members the surgery helps symptoms, and seeing an experienced surgeon will mitigate the risks. Different surgeons have different surgical techniques; some members who’ve had surgery with Dr Hackman have found some temporary paralysis of the facial nerve so they’ve had droopy eyelid and sometimes an uneven smile, but this improves with time.
But equally, leaving the styloids in, if they’re irritating nerves, can cause damage to the nerve which potentially could then not heal if you have the styloids removed later. So postponing surgery could cause more damage…
As you say, it’s a good opportunity to have surgery with Dr Hackman- when I had my second surgery I was in two minds whether to go ahead as the symptoms weren’t as bad as the first side, but I decided to as I wasn’t sure if the surgeon would always be available, and also I wanted to take the chance to be as best as I could be! (Lucky I did, as the surgeon is now doing very few operations & I wouldn’t meet his new criteria). Some of the doctors on our list have stopped doing surgery, so it is a consideration, you might not always be able to see someone with experience, especially locally.
Are you having pain both sides? Bilateral surgery is often a chosen by members because it gets surgery over and done with, but it is harder to recover from. So if your symptoms are worse on just one side, it might be worth getting just that side done, & seeing how you feel afterwards?
Hope the site is helpful for you to make the right decision!
Thank you for the thoughtful answer, Jules. I appreciate it! I didn’t think about how the styloids could actually do more damage to nerves long term. That definitely wouldn’t be good.
Yes, I have pain on both sides, with the left being worse. I’ll think about the idea of trying one side first. Thanks, again!
Hi Megs22!
I just read your comments and have to say I totally am in the same situation. Next Monday I will travel to Chapel Hill to meet with Dr Hackman on Tuesday morning. I was having multiple symptoms last summer and was diagnosed at that time via CT scan. I found this forum, which has been wonderful, and eventually found Dr Hackman. In the meantime, I met with 2 other ENT docs who both agreed with my diagnosis. Unfortunately, one would do surgery intra orally and the other externally. I felt quite conflicted at that point. Oddly enough, most all my symptoms stopped and hardly were apparent shortly thereafter. I’ve lately felt like you, perhaps just live with this. My styloids are 4 and 4.5 cm long and one doc mentioned my ligament on one side was somewhat calcified. So, I dont know how this will eventually work out, but thankfully Dr Hackman has wonderful accolades and is very experienced. Also, like you, I worry I might need surgery down the road and then what?? I don’t know if additional testing may be in order as it has been about 10 months since my CT. I wish you well with your situation and please know you will be in my thoughts! After my appointment next week I will give an update.
I’m so glad you’re getting to see Dr Hackman. He really was great - not like the typical surgeons you think of. Haha.
It really is a tough decision with moderate symptoms (which I realize is a good problem to have compared to what I’ve seen people dealing with on this site ).
The more I’ve thought about, the more I’m leaning towards doing it soon. But I still worry it’s not necessary. Yet the thought of it getting worse and possibly causing more issues and/or irreversible damage is scary too. (The confliction continues… )
Good luck with your appt! Definitely keep us posted.
Hi! I’m scheduled with Dr. Hackman on March 18th. I’m currently trying to decide between having one or both done at the same time as my symptoms on my right and the trajectory of the styloid are worse.
My primary care recommended one at a time and at first, Dr. Hackman had suggested just removing the worse one on the left. At that time my symptoms on the left were so severe I wasn’t even noticing the right. My right has been bad lately as well. My problem is I’m traveling in for it so care for my kids and the cost of travel weighed against having two surgeries.
If it’s convenient to see Dr. Hackman for you that’s awesome! Did he have an opinion on whether to do them all together and why if so? I messaged him regarding my other side’s pain and he said we can do both when I come in to see him if needed. I’m waiting to talk to him in person about one versus both styloids.
I don’t know how long I’ve had Eagles but I know I started feeling a lump in my throat eight years ago and my symptoms have gotten progressively worse. I have a lot of symptoms outside the pain that Dr. Hackman and my team of doctors are hoping are caused by Eagles. My other symptoms are debilitating so surgery is my choice. My original ENT told me I could leave them alone and deal with the pain. Dr. Hackman said some people live with elongated styloids and have no symptoms at all.
I can post on here when I have more of an opinion post-surgery. I know there are a lot of Dr. Hackman’s recent patients so it may help you to take a look at their recoveries and stories if you search his name on the forum.
Ectocake: You’re not alone. I’m having surgery with Dr. Hackman on the 22nd, shortly after you. My two cents? If Hackman advises to have them both removed at the same time? DO IT; get it out of the way and move on with your life.
Megs22: You’re also not alone in your feeling unsure. Your point about having “lived with the pain so long that you’re used to it…” also speaks to my own experience. However, we have to face our fears and just move forward. Definitely pray about your decision, and the surgery itself while considering this: Your concern about IF you decide to wait is well founded as you might end up missing a golden opportunity. Hackman is quality, and has the courage to do this work while speaking the truth. Yes their are risks to the surgery, but to Jules point: “But equally, leaving the styloids in, if they’re irritating nerves, can cause damage to the nerve which potentially could then not heal if you have the styloids removed later.” Better to overcome our fears and to have courage
Im following. Mind if you guys keep me updated on how surgery goes and updates. I had my surgery scheduled but I canceled it a opted for an Injection first to see how that goes. My case is a little different I have a broken Styloid Process and my symtoms ill say are moderate but are persistant 24/7 its iritating me. I see Hackman o. The 19th for the injection. Ill check in here and there to see how you guys are doing. I hope for the best
Will keep this thread updated for sure! I must give you my opinion on your decision to do an injection first…So I had 6 visits with Caring Medical in FL, where I had about 1,650 prolotherapy and platelet rich plasma injections to my neck, lowerback, and hip. In addition to these injections in FL, I had received other injections with local doctors that included prolotherapy and PRP. That did not cure the ES, although it DID help my neck immensely as my cervical was damaged from a hit-and-run rear auto impact in 2012. (this is a discussion from Hauser on the topic: “https://www.youtube.com/watch?v=WmfKfinIzfM”) So the costs mounted, and I had to stop, and instead focus on surgery after first having a meeting with Dr. Osborne in LA which left me disappointment, as I did not feel comfortable being his patient. Then I was referred to Dr. Hackman, and I made sure I was able to meet him, and so far, it’s been worth it. Now I’m not a doctor yet it is my opinion that you should work with Dr. Hackman. My view of him is that he’s a dam medical rock superstar (NOBODY TELL HIM!!! ). When I met him, he had a “glow” around him…which indicated to me that he’s a spiritual man; indeed, very probably Christian. That’s my 2 cents.
@HappyBear - the type of injection @Cdbruce is getting is likely lidocaine + cortisone so it’ll be a powerful pain reduction plus anti-inflammatory med combo. This is injected into the tonsil area under ultrasound surveillance so the medication is put in a precise area behind the tonsils. Some doctors use this type of injection as a diagnostic tool for ES whereas others try use it to help relieve symtpoms to postpone surgery or as a patient awaits surgery. Unfortunately, the results can be very short term i.e. a few hours to a few days. For some it doesn’t help at all & for others it makes symptoms worse. We have had a few members who actually got several months of pain relief from this type of injection so you can see the results are pretty mixed.
THANK YOU for explaining this! I admit to being completely naive about the use of lidocaine + cortisone behind the tonsils. I’ve had literally well over 1,000 injections into my body since 2012 and know how painful they can be; but in the throat? OUCH! Yeah I don’t think so. Instead…“Surgery Aho Matee!!”
Update: I decided to go ahead with the bilateral surgery and am scheduled for April 24. I’m terrified but I feel like it’s the best choice overall. Thank you all for the support! So grateful to have others who know what I’m going through.
@mikedean913 It went so much better than expected! I have no pain in my throat anymore and my recovery was much easier than I anticipated. My biggest issue was feeling tired but I didn’t have much pain at all.
That’s so amazing to hear, congrats!! I’ve been working myself up a bit because I’ve been reading so much on here about facial paralysis, first bite syndrome, and all sorts of crazy stuff. Thanks for the reassurance
@mikedean913 - There are risks w/ ES surgery but as surgeons become more experienced w/ the surgery, it seems there are fewer patients w/ the post op problems you mentioned. That said, whether or not you end up w/ some temporary paralysis or other nerve related problem also depends on the way your nerves are “arranged” w/in your neck especially around your styloid & up near your skull base. My glossopharyngeal nerve (GPN) was wrapped around my styloid & had to be unwrapped so the styloid could be shortened. GPN irritation/damage is what causes First Bite Syndrome, so of course I got it. For many people, a post op lip droop (caused by facial nerve irritation) or FBS gradually disappear over 2-4 mos. after surgery.
I’m glad your appt. w/ Dr. Hackman is coming up soon!
@mikedean913 That’s understandable and it definitely isn’t something to take lightly. Everyone is different so I would go into it thinking some of those things are still possible, though I do think it’s less likely than we think given the experience of Dr Hackman and surgeons like him.
Any advice is appreciated!
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