Hello! I am six weeks post op from having my left styloidectomy, a calcificied ligament removal, and a cyst we hadnt anticipated on as well. The surgery was done extraoral and my scar is healing beautifully. My pre surgery symptoms after the first two weeks post op were improving every day. I was starting PT and my equilibrium was coming back after nine months of unbalanced walking, head fullness etc. Then… I was putting away some things in our hall closet and when i stood up I accidentally bumped my left jaw. I knocked it pretty good. I immediately iced it and the next day went to PT. After our normal routine a few hours later, I swelled up in my entire face. My opposite side which had been pretty unnaffected at this point, suddenly swelled as well. Ever since this, almost two weeks now, I am now presenting my right side being symptomatic. Same issues: ear pain, tinnitus, pain and difficulty swallowing, head pressure, all the standard things. I was diagnosed in June with bilateral Eagle’s with calcification. My left side was done but my right side actually has more significant calcification. My question is has anyone in our group gone in for one styloidectomy and ended up needing the other side done? My surgeon said we would know within six months if he needs to take me back in for the right side surgery. I just was doing great, coasting along in healing, bumped my surgery side jaw and now I’m suddenly symptomatic opposite side. Any input i would really appreciate because as we all know here, we are the only ones who truly get this trial. Questions for more clarity are welcome also. Thanks, Candi
I’m so sorry you bumped your healing side, & it’s caused a flare-up of symptoms on the other side. Your facial swelling sounds very uncomfy!! In cases of bilateral ES, it’s more common than not for the second side to become symptomatic after the first side is removed. This may be due to the imbalance created in the neck after one styloid was removed.
I had symptoms from both sides but the second styloid’s symptoms were quiet for close to a month after my first surgery & then they came zooming back. I was miserable until I could have my second surgery. At the time, my surgeon wouldn’t do surgeries any closer than 6 mos apart (now he’ll do them 3 mos apart). I couldn’t wait to have that second surgery & when I finally did, all of my remaining symptoms gradually disappeared.
That sounds just like what I’m experiencing. Out of nowhere all the prior symptoms are returning. Okie, I have an appoinment for first week of Oct with my surgeon and I guess we’ll go from there. Did you continue with your PT in spite of becoming symptomatic on opposite side? I’m wondering if continuing with it is beneficial or not becasue afterwards my symptoms are worse.
Sorry for all the questions! This is my first time going through this and unfortunately it feels like wandering in the dark without any light at times. Thanks!
So sorry your symptoms have flared up again! I guess it’s partly due to the swelling, & jarring the other side too…I think most of us end up needing both sides doing as @Isaiah_40_31 says…I’d be a bit wary of continuing PT right now, give it a chance to heal again.
Hope it settles down soon!
Thank you for all the comments and advice, you and Wendy both! I am going to step back from the PT for right now. My surgeon is calling me today so that will be good. I just keep telling myself atleast now you know what you’re dealing with. I’ve already got half the battle won and just hang in a little longer. Sometimes the mental strength is greater than the physical… Im so thankful for this forum and the support. Have a great weekend!
You’re right, you’re over half way through, a good positive attitude
Please let us know how phone call w/ your surgeon went today. I hope he’s supporting the plan to have the other styloid removed sooner than later i.e. 3 mos as opposed to 6 mos.
Ok, gotcha. Then I’m definitely holding off on the therapy for now. Ill let you both know how the appt goes, definitely. Today, he said that me bumping my jaw didnt cause my right side to become symptomatic. He said its just the other side is showing itself now. They knew this could be a possibility and are supportive of round two surgery. I’m hoping for sooner than six months also! The symptoms are stronger second time around and I’m going to tell him I’d like to get on the surgery schedule in November. Ill keep in touch as things move along. Thank you for being here through this…Have a great weekend!
Good that your surgeon is supportive of having the other side done, I hope you can get it done a bit sooner, but its good to let everything heal & settle down first…
I had the same experience w/ the symptoms on my second side being stronger than those on the first side. I’m sorry that’s happened to you, @CwM!
I’m also really glad to know your surgeon is on board w/ getting you in for the second surgery. As @Jules noted, getting some good healing time for the first side is important so your second surgery should be at least 3 mos. after your first one. November sounds like a good distance after your first surgery. I had my first surgery in Nov. 2014. It was the week before Thanksgiving & my jaw was so stiff, my husband kindly put my whole TG dinner in the blender so I could eat it as a “soft meal”. It looked pretty awful but sure was tasty!!
Hi, I agree that second side does become (or continues to be) symptomatic after first side is done. Now you have one JV decompressed I’d encourage you to try to take advantage of that by regularly taking a rest either lying supine or reclined in a chair so decompressed JV on your operated side can open and help to decrease the trapped fluid levels in your head. This helped me while I waited for second side to be operated on. But we are all different and you will have to see if that helps or not. Best to try while awake to see if helps. Overnight experiments while asleep can be trickier if don’t work out. I got my second side done after 3 month interval. Hope you get early date soon. Take care. D
Hi everyone. This post is exactly what happened to me. I had my left side done in May and early July was headed to Vermont for vacation and turned my head pretty hard to the right and since then my symptoms have come back. I have a follow up appointment with my surgeon tomorrow and I will tell him then and see what he says. I find myself holding on to things at work because of the dizziness or light headedness especially when I look up. That really sets it off. I try to watch the posts when time allows so I can follow and see how things work out for everyone. You’re right Candi, this forum has helped me immensely. Fingers crossed for all of us. Thank you.
I hope that things settle down for you soon & the dizziness goes…let us know how your appt works out!
We’ve had a few members with similar symptoms who found a soft neck collar helped them keep their heads out of the positions that provoked symptoms. I don’t imagine they’re super comfy, but they do serve as a constant reminder to be careful when head turning. These are available on Amazon & probably at a medical pharmacy (not Target, CVS, Walgreens, etc). You can search for other forum members’ posts about soft neck collar use.
Thanks everyone for all the tips and just being a listening ear. For me, one of the most difficult things about Eagle’s, besides the myriad of physical symptoms, are the emotional ones. I dont know about any of you who are currently enduring this syndrome but it can take a toll… Especially, as Tommy said how you’re doing well and then the symptoms start up again. Its enough to make me so angry,lol. I think it takes alot of strenth to be the 4% of the world to have this and keep getting up each day with postivity and the drive to advocate to our surgeons to get on the other side of this. We will get to the other side of it. I was reading those of who are in the thick of it right now and my heart goes out to you, you are heard, and we’re all here for you. I’m so grateful for my surgeon at VCU, he is the best listener and never once has questioned me or dismissed my returning symptoms. I’m here if anyone needs to vent or relate. Hang in there, we’re almost there! -C
Thank you for your kind & thoughtful post, @CwM. You’re also still in the thick of the ES struggle. It’s so great to know you’ve got a doctor who’s in this with you & has supported you from the start. That alone is super encouraging & what we wish for all of our members.
Hi C! I am recently diagnosed with ES and wondered if VCU is VA Commonwealth U? I am searching for other doctors familiar with ES as I want to be sure I am covering all my bases! Would you mind letting me know who your doctor is that you see? This is such a difficult time to know where to go. My symptoms are all over the place and vary from day to day. Thank goodness for this forum! And Thank YOU!
Hi there! So VCU Oral and Maxofacial Surgeons Dept in Richmond, Virginia is a part of VCU, yes. I’ll be seeing my surgeon this week and will ask him if he is open to taking new ES patients which i believe he would definitely be open to. I’ll message you this week as soon as I have his consent. Especially since you are already diagnosed E.S. it should be no issue getting in to see him and get things going. I’m sorry for all your symptoms, it is so difficult but keep staying strong but you can do it and I’ll see what I can do! Take care, C
I appreciate your considerate help! I’ll wait to hear! Thank you