Hi everyone,
I’m a newbie to ES. When I got doctor’s diagnosis 3 weeks ago, I was totally in blank. I’m so glad that I found this group.
My stories started at the end of 2019. I felt sharp pain inside my left ear everytime I yawned. I tried to book the appointment to visit my primary care doctor (PCM), but everything was slow and difficult to discuss on the phone due to COVID-19. It was more challenging that TX got hit hard and the medical facilities had change their policies for non-emergency care. My pain was on and off for the entirely year. I used tylenol and ibuprofin to release the pain. Fortunately, this year the situation is better and my hospital SAMMC (Brook Army Medical Center) starts to get a patient back to facility. I got a chance to get refer to Audiology because my hearing got loss. After running the test, I felt so much pain that I could not control and ended up in ER. The sharp pain was serious that I hurt everytime I swallowed and talked. Many doctors checked on me and ran many tests. the ENT doctors suspected me have ES because of the CT scan result that I have harden ligament. I met so many ENT there until I met Dr. Hayes. He confirmed me that I have calcified stylohyloid ligament with pseudoarthrosis. He recommended me 2 treatments which are steriod injection to control the pain and surgery to cut the ligament shorter. I’m so confused with this disease and I would like to ask some suggestion.
Have anyone tried steriod injection? Dr.Hayes said it was dangerous and he could not fined pain doctors who want to take a risk around TX and nearby states for me.
If I should surgery, does it have any difficulty for daily life? Dr. Hayes said he would do external surgery due to the position of ligament that could help minimum the nerve’s damages. He said he told every ES patients that he did surgery that it had 50% recovery and 50% not. Howerver, all his pateints claimed that they were happy with the surgery. Honestly, I tended to the surgery option. But I’m in late 30s and have two young actived children; 2 and 4 years old who need my attention 24/7. My husband was disablities veteran who injured from major car accident during service time. So he frequently see the doctor for surgery and rehab. We do not have any relatives in this country. It makes me nervous to take the surgery at this time.
I’m so sorry to ask many questions that seemed confusing. I feel all over the place now. I don’t know I’m ready for this surgery yet.
Thank you for this community that make me feel that this disease is not the rare one.
While I personally did not get steroid injections, if you search from the top bar you may find some results.
Regarding recovery and how it affects daily life - I had about 2 weeks post op that I was sleeping for most of the day. This was either because my body needed that to heal or because the pain meds made me that tired. Both surgeries I took 4 weeks off work, and 6 weeks of no exercise. Two things related to nerves post op: on both sides I got first bite syndrome which is a sharp pain in the jaw the first few bites/drinks. I knew this was coming and was able to push through. I also had a tingling/needle-like sensation in the lobe of my left ear anytime I wore headphones or adjusted earrings for about 8 months after surgery.
Ultimately I would go through surgery again. The help it gave me was worth it to me. Some members wait until the problem becomes severe enough they can’t function, which I understand and was almost at that point before my first surgery.
Quite a few members have had the steroid injections- mixed results with them though. Some members have been able to put off surgery for quite a while, but there has been the occasional members who has ended up worse off. They’re not a cure, just a temporary fix.
The external surgery is a better option compared to the intra oral surgery, as it gives better visibility as Dr Hayes says. There are some risks, as with any surgery, although if the surgeon is experienced these are lessened. The most severe risks are a stroke or a bleed, as there are major blood vessels close to the styloid process, but this is very, very rare. Members often have a bit of nerve damage from the nerves being stretched or irritated; the facial nerve can be affected so you may experience numbness or tingling on your face/ jaw area. Occasionally it can cause the mouth or eyelid to droop a bit. Occasionally people have had irritated nerves to the tongue so speaking can be a bit tricky. The accessory nerve to the neck/shoulders can also get stretched which could cause temporary arm weakness.
As for recovery, you will need to rest- certainly lifting little ones would be too much probably for a couple of weeks at least- my children were grown up, but I took 4 weeks off work as I used to work with little ones & would have to lift them. Also I couldn’t drive for 3 weeks after my first surgery as I couldn’t turn my head comfortably, although this was easier with second surgery. So if you’re a carer for your husband, and 2 young children, & don’t have help, the surgery could be difficult for you…
Trying the steroid injection could be a possibility to help you keep going until you can have surgery? It’s difficult, a personal decision as only you know how much pain you’re in…there are nerve pain medications which can help, & lidocaine patches or topical cream can help; it might be worth trying if you haven’t already?
Here’s a link to info about that: ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
(Scroll up to the top of the discussion for the info)
I hope you can work something out, thinking of you
Thank you so much for your experience. Now my plan is to get a surgery. I agree with you that I should not wait too long to solve this problem. I think if I can get care faster, my recovery time may be shorter. I will talk to my doctor this week to set up my surgery date. Wish me luck.
Thank you so much for giving me the encourage to do the surgery and op care plan. I can arrange my surgery plan better. I know my situation is tricky to recover in peace. But I will try my best to pull all helps and supports that I can get to pass this situation. Hope I can get all supports I need .
I personally have had multiple steroid injections and they were very helpful. You also have the option of taking an oral steroid too. As for the injections being dangerous, I would disagree. Maybe in the hands of an inexperienced doctor, yes. Finding the right doctor who does them all the time is important.
The one advantage of injections is that you are not taking oral meds (such as nerve meds) that have side effects. They can also put some lidocaine or marcaine in with the steroids that give you some immediate pain relief until the steroids kick in.
I’m not familiar with Dr. Hayes personally but do you feel comfortable with him performing the ES surgery? How many ES surgeries has he done?
I had external both times and was doing pretty well on day 3 after surgery. My doc also gave rx for prednisone to control swelling after surgery, had good wedge pillows and iced all the time. There are alot of tips for after surgery here that are very helpful. I was a single mom with 3 young kids. There were some medical treatments I put off because I had no family and no help.
Any chance of getting a family member fly in to help you for a couple weeks? That is what I suggest. Looking back, I could probably handle the little ones after 3 days but their energy levels at that age are pretty difficult to keep up with. Everyone recovers differently after surgery so it can be hard to predict. I prepare for the worst, hope for the best. I was pleasantly surprised after my surgeries.
2 weeks after surgery I was starting to feel energy return. With 2 young ones, you can probably manage if your husband help out some so you can get rest the first few weeks on the couch. Definately no lifting though.
Thank you so much for giving me advice. I am so sorry for late respond. I was busy with my husband surgery trial.
I contacted many pain doctors for injection to reduce the pain while I was trying to plan the surgery but I could not find one who could do in my area. So I tried massage to reduce muscle tension as recommend in this forum. It is kind of helpful for now until I can book my surgery.
About Dr. Hayes, he claimed that he did a lot of Eagle syndrome in SAMMC. All ENT doctors I met confirmed that he did very well with the surgery. Now I am quite confident with him after talked to him many times. I hope he can perform well on my surgery. I will update to you when I get my surgery’s day.
I feel so relieve to hear your story after surgery. It makes me feel less anxiety and more comfortable to do surgery. Now I’m planning to get surgery after school starts so my oldest one can go to school. So my husband can handle a little one alone for couple hours. Hope the plan work well.
Pat,
That sounds like a good plan. Too bad they cannot do steroid injections in neck and jaw/ear area. Have you considered asking for oral steroids? Perhaps Dr. Hayes can give RX? Im glad he has a good reputation and you have confidence in him. That makes all the difference in the world! Keep me updated. You have gotten your diagnosis and have a good doc and can move forward. That is more than half the battle.
What you learned about Dr. Hayes, especially from other doctors is great! When a doctor is well respected by his peers, it’s all the more reason for his patients to trust him. I hope things settle husband heals quickly from his surgery so you can have your turn at recovering. Waiting till one of your little ones is in school sounds like a good idea.
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