Upcoming Surgery

I was diagnosed with Eagles Syndrome in February 2017. I definitely feel lucky I was able to get such a quick diagnosis, after reading several members who have suffered for years. My pain started the end of December 2016 after a flight. At the time, I thought I was coming down with Strep throat as I had excruciating pain when I would swallow and yawn. After a few weeks of no other symptoms, I assumed it was allergies as that is what the ENT always defaults to when I had issues. So I took all of my allergy meds (mind you, I don’t really have allergies that require daily meds, just an occasional attack here or there). For 6 weeks I took my meds and nothing changed, the pain was still excruciating and nothing was helping.

I set up an appt. with a general practitioner. She told me I had a mild ear infection and gave me antibiotics ear drops. This caused more pain/pressure–probably because I didn’t need them. 3 days later I made an appt. with my ENT. They said nothing looked wrong and put me on steroids—no relief. I called back to complain I was still having pain. They upped my steriod dosage. Still no relief after 3 days. After being on steroids for over a 10 days and no relief, I went for a 2nd opinion. The second ENT thought my symptoms sounded similiar to carotidynia so he sent me immediately for a CT scan.

I happened to have a nuerology appt the next day (I see one every 3 months for migraines). She thought my symptoms sounded more like Eagles syndrome so she was also interested in viewing the results of the CT scan. After the initial CT came back, it was confirmed I had Eagles. The right side presents problems. I was referred to the Univ. of Iowa hospital and clinics to see Dr. VanDaele as he is most familiar with this condition. I was sent for an MRI along with an additional CT scan with contrast.

I am now scheduled for surgery the end of July. I just have a few questions for those of you that have had the external surgery:
From reading it appears to be about 2 week recovery time ~ give or take.

Was your surgery outpatient or were you admitted and have an overnight stay?
Did you have any nerve/vein issues?
Did you happen to notice a lot of symptoms were alleviated after surgery, that you didn’t even know ES was causing??

Being recently diagnosed, I’m just wondering how much of neck issues are stemming from this vs just “life.” I have horrible neck pain, chronic migraines, etc.

I look forward to your responses. As the surgery gets closer, I find myself reading and reading through this website as there is just not that much known. It makes for anxiety thinking about surgery, but I know the results will be worth it.

Glad that you were diagnosed relatively quickly, and that you don’t have to wait too long for surgery!
I had external surgery, and was kept in overnight as the doctor who operated always puts a drain in overnight to help with swelling and infection. That seems to be unusual though- most seem to be sent home the same day, but obviously check with your doctor. And make sure that your doctor removes as much of the styloid as possible.
I had jugular vein compression, and felt a big difference within a couple of days of surgery, after the swelling had gone down (dizziness and head pressure etc.). The nerve pain I had before surgery has eased, although not gone completely- nerves can take up to a year to heal, so sometimes it can take a while to feel the full benefits of surgery. The deep neck pain and the pain I had when turning my head went away quickly.
I’m sure you’ve seen the info about what to expect post-surgery, and the links to people’s posts, plus seamom’s shopping list, so hopefully a lot of that will put your mind at rest!
Just to add though often the other side make’s it’s presence felt once you’ve had one side removed, so a lot of members go on to have their 2nd side removed- but that shows the surgery often isn’t as bad as you might expect!
Hope that your surgery goes well!

Glad you found this site, melb! KCannady is another member on this site who had terrible (often visited the ER) migraines that ended up being caused by ES. After two surgeries (she had bilateral ES), I believe the migraines stopped.
Hopefully you will have that result to look forward to!

I had terrible neck pain from ES which has mostly gone away, & I’m 2.5 years out from my first surgery & almost 2 years out from my second one. My current intermittent neck pain I think is residual from a whiplash injury I suffered when I was about 23 years old (almost 40 years ago). My doctor did both my surgeries outpatient so I went home the day of surgery.

I had vascular problems on my right side which took about 8 weeks to fully subside after surgery. As far as whether symptoms that I didn’t know were from ES disappearing, I’d say I had none. My symptoms were all pretty textbook ES symptoms, & I would say they are 98% gone after surgery.

It’s great you’ve found a doctor who’s willing to help you so soon after your diagnosis. That is indeed good news!

Thanks Jules! I appreciate your response. I was so nervous when the doctor explained to me that nerve damage could occur. It seems some deal with that, but for most, it resolves/heals itself. I’m hoping if I do have nerve damage that it won’t be permanent.

Hi Isaiah_40_31. Thank you for the responses. You have indicated that you have had surgery on both sides. Did both sides initially present problems, or did you notice that once you had one side removed, the other flared up? I currently only have issues with my right side, but from what others have indicated, once the problem side was removed, the other side flared up.

I know all persons are different and handle pain differently, but did you think the first surgery was worse (recovery) or the 2nd one? I’ve also read you shouldn’t drive for the first few weeks. Did you receive that restriction from your doctor, or is this just a case by case basis?

Hi! Im sorry for what you are going through. I thought I would share my story but as I type I am on a plane going to Los Angeles to see 2 doctors that specialize in this horrible disorder! I have been sick for 13 months and it started with back pain for no reason and then it went to gastrointestinal issues and pain in liver ect. Those symptoms subsided but I statted having eye issues last July that had not gone away but only have got worse. I have had severe numbNess on the left side of my face and my eyeball . I have had palpations and short breath that have caused my heart rate to go down. I have chronic headaches and neck aches. I have pain in my cheek bone . I have popping in my ear and a gland that constantly pops as well. I have so many symptoms that is has delayed my life for over a year and taken a major toll on me!! It is only a feeling that any of us on here can relate too! The odd sick sick feeling that we feel is the worst I have ever felt on my life. I went to my local ENT in Brevard county FL in march finally after seeing my nuro doc for 8 months and been diagnosed with TN…no. I didn’t give up!! So the local ENT DID a CT scan and did ZERO ABOUT THE RESULTS…even as it said on the report what I have going on…so I took the report to my nuro doc and he said I’m going to MAYO. .I went to mayo and had another CT, well at that ppint 2 months later yes it’s gotten worse and once again confirmed that I am bilateral and all the way to the hyoid bone. The doc at mayo has only done 10 surgeries and I don’t feel good with that especially since I have suffered for a year and been passed off like nothing was wrong with me… it’s so horrible in FL with the health system. I can’t wait to see the first doctor tomorrow at usc…doc sinha! Is it here on the plane with vision issues and a migraine on both sides of my temple. I absolutely hate that we all go through this and I hope that we can get through it and live life normally again. I will keep each and everyone of you sufferers in my thoughts and prayers …most of i will keep you updated and please do the same!

Most doctors seem to monitor the nerves while they operate to check that they can safely remove as much of the styloid as possible- that’s something you could ask. Nerve damage is rare, but is a possibility doctors have to raise.
You asked Isaiah about the second side flaring up- I had symptoms both sides, but they weren’t as bad on the 2nd side, but that got gradually worse over the next 6 months or so, so I opted to have that side done as well, while I was still ‘in the system’, and it was easier to have the op with the same doctor. The recovery the second time was an awful lot easier, not that the first time was as bad as I’d expected either.
Recovery wise, it seems to vary a lot between doctors with how long to expect. I wasn’t ever told more than to take it easy, so it’s a matter of taking it day by day and stopping if something hurts! I couldn’t turn my head easily after the first op so didn’t feel safe to drive for 3 weeks, but the second time was easier. I don’t think anyone’s ever been officially told anything about that.
Some members have been referred for physiotherapy afterwards, but not everyone, but that does seem to be helpful to ease neck stiffness. I did some gentle stretches myself after the first week or two, so again that’s worth asking about.

Hi melb,
My initial symptoms were only on the left side. I could feel my styloid under my jaw & it was making my neck hurt. I was fortunate to end up at an ENT office where they were familiar w/ ES so my diagnosis was accurate & quick w/ a follow-up CT scan for confirmation. The CT showed I had it bilaterally which was quite a surprise since my right side at that time was asymptomatic. I was diagnosed at the end of Sept. 2014 & had my first surgery mid-Nov. 2014. By the time I had my first surgery, I was having vascular symptoms on the right side - vertigo, dropping blood pressure when I exercised, irregular heart beat, etc. That was the side done first. It wasn’t the longest but was giving me the most scary symptoms. My left side just caused pain but not vascular symptoms & yes, after my right styloid was removed, the symptoms I had on the left side became progressively worse.

All that said, if you are totally symptom free on your left side, you may stay that way even after your right styloid is removed. We only talk about the second side becoming more symptomatic after the first surgery because it does happen & we don’t want people thinking there’s something worse wrong with them than just ES.

I hope this info is helpful.

:relaxed:

Thank you for sharing your story. Hearing what you are going through makes it hard for me to complain about my symptoms knowing how much worse others have this. I hope the doctors are able to help you and you get relief! I know how horrible migraines are and dealing with a migraine on top of the ES symptoms is absolutely miserable. Hang in there–it sounds like you will be in good hands.

Thanks Isaiah–I’m hoping I fall into the category of not having symptoms on the left side, however I’m thinking I’m having symptoms creeping in. I struggle because the symptoms I initially saw the dr for were simply pain when swallowing/yawning. After reading through several people’s symptoms and common symptoms–it appears I have more symptoms than I originally thought, so I’m hopeful to see which issues surgery will solve and then deal with rest. I have been having severe neck pain for the past 2 years–but of course, no one tied this to ES back then, so I have no idea if the neck pain stems from ES or not. I cannot tilt my head backwards without excruciating pain.

I am very lucky to have stumbled across this site. Thanks again for your responses.

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Thank you Jules. I will definitely follow up with the doctor and make sure he will be removing as much as possible.

Thanks! I realized I had some typos on the last messge…ooops! Yesterday’s
appointment was horrible at USC with Dr. Sinha!. He feels he wants to start
the holistic way at first and that does not work for me at all. The
approach that was mentioned is the do exercises and try to stretch the area
out and in my opinion THE STYLOID PROCESSES are growing and it’s already
been a year of my life! I will not go that route! I was already told that I
need the surgery. I am going to my 2nd appointment today at UCLA and let’s
see how that goes! In the meantime I am still waiting for DR. Sanji in San
Jose to look at my reports and get back to me. I heard he is the countries
best Dr for ES! I will keep you posted and again I am sorry for what you
suffer with as well!

tambralee915,
I’m sorry to hear about your results at USC but it’s as I suspected. UCLA may provide you nothing better. Dr. Samji (it’s w/ an “m” not an “n” just so you’re accurate) will be your best advocate for surgery. I do hope he or his medical assistant get back to you soon.

melb,
The symptoms for ES are quite varied. There are many which are common & there seem to be some that are unique to some individuals. I had a weird one that would come & go where the gums along my teeth on the right side of the roof of my mouth would swell & feel raw like I’d just scalded them w/ boiling water. After a half hour or so, the sensation would go away. I don’t know of anyone else on this forum that has had that symptom. Your neck pain sounds very suspiciously like an ES symptom. My neck hurt in the front. When it hurt in the back, it was at the base of my skull kind of where my styloids attached. I never had migraines or headaches though, but those are very common ES symptoms.

@melb
I read your headache question and thought I would directly address it…I had severe one-sided migraines several times a week that stopped after my first surgery. I had different issues on my other side (overt vascular) but felt my headaches were so painful I picked that side first.

Now that I have had both sides done, my long list of symptoms that seemed so unrelated to each other has all been addressed by surgery.