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Eagle Syndrome - Online Support Group

My surgery experience

So I had surgery for Eagle Syndrome on April 26th 2019. My surgeon was Dr. Rui Fernandes with The University of Florida and Shands Hospital.

My styloid process is actually 2.9cm and isn’t in the typical range for true elongation, but I was having symptoms of Eagle syndrome all the same. It started when I was very young. I was eating a bowl of cereal when I tried to swallow a bite and all of a sudden was overwhelmed by an intense pain that felt like a razor blade running across my throat every time I tried to swallow. Even swallowing saliva was painful. The episode lasted a few minutes then subsided on its own. It happened again within a month and then stopped almost entirely until I became an adult. In the last 12 months I’ve had at least 15 episodes leading up to the surgery.

I went to an ENT at the local Hospital/medical group that I prefer (Baptist Health) but the ENT was shocked at the symptoms I described. He said it sounded like Eagle Syndrome but he didn’t believe it existed until he saw me. The 8 ENT’s with his practice had no experience with treating it so they referee me to a specialist. The first refused to take my case, the second, Dr Fernandes had performed the procedure multiple times and was confident he could treat me.

The surgery lasted about 2 hours. Afterwards, I was in post-op for maybe an hour. The surgeon intended for me to stay overnight for observation but, due to a miscommunication, I was sent home about an hour or two after the surgery.

This left me baffled and confused because the surgeon hadn’t given me much information about the recovery. The hospital sent me home with a few lines of discharge instructions and the verbal instructions were lost in the haze of pain meds and anesthesia.

After going home the same day, I felt great. However, this was mainly due to the anesthesia and pain meds they’d given me. On Saturday I felt like I was on my death bed. I had no idea how swollen my face and throat would be. I wasn’t prepared for this and felt like something was terribly wrong. Luckily, I found this forum and realized my symptoms were in line with others. Temporary decrease in hearing in my left ear, numbness in my face near the surgical area. The doctor went in through my neck and I have about 6 inches of stitches running down my face.

I’m on day 4 since surgery. There is orange, clear and red oozing from some of my stitches. I became severely dehydrated and the skin on my face started cracking. Fluid then began sweeping out of one of these areas (directly under my chin).

I’m confident once the swelling goes down, I will be out of the worst of it. In the meantime, I’m going to continue using ice packs and keeping my head elevated when sleeping.

I will continue to provide updates as my healing progresses.

Hi, & welcome to the site!
Glad that you feel the site is helping you with post-op info…& we weren’t aware of your doctor, so good to hear of another one.
What a shame that you were sent home early with no info, not great. We’re not doctors on here, just people who’ve had ES ourselves, so if I were you I would either ring the clinic where you had your surgery or contact your PCP about the wound oozing, just to make sure that it’s not infected.
Swelling can ease if you keep yourself propped up, so sleep semi upright if you haven’t been already, & lots of ice packs! Try popsicles if swallowing is painful so you don’t get dehydrated again.
Yes, the numbness should ease gradually, but it can take a while! I still have a couple of patches on my jaw/ ear area, but that’s a very worthwhile price to pay for feeling so much better!
I think from other’s experience day 4 can be about the worst, once you get over the 1st week things will improve!
Thinking of you…

bakari86 -

As long as the fluid is clear, you probably don’t have an infection, however, as Jules noted, it would be a good idea to either call your surgeon’s ofc to ask about it or go see him or your PCP to make sure all is well.

Your dehydration situation sounds pretty awful. I hope you’re drinking lots now! Extra fluid is important while healing. Keep that water, iced tea, juice, Gatorade,
(not soda :upside_down_face:), coming!!

Thank you both for the advice and well wishes!

I called the doctor’s office and am currently awaiting their reply. The fluid is orange but my nurse neighbor said it doesn’t look infected.

Today has been much better since sleeping with my head elevated. I have less swelling and the feeling like I was constantly choking has all but subsided.

The bandage for my wound came off early due to all the sleeping fluid. I have put a makeshift surgical bandage on and am also waiting on further instructions from my doctor.

All in all, things feel like they are moving in the right direction. Thank you both again for your advice and well wishes! It is much appreciated!

Sincerely,
Bakari

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That’s good, thinking of you…

So it’s been almost a month since my surgery.

What a rollercoaster!

My incision took about 3 weeks to close. I believe the surgeons bandaged the wound but forgot or chose not to add the glue. When I had my two week follow up, they sealed it with glue and another bandages and it closed within a week. No more drainage while I’m out at dinner or blood stained pillows!

Now, the incision has turned into a solid “lump” and the swelling has returned, since the fluid cannot drain.

The PA I’m seeing now suggests I put a warm cloth over the incision daily so that the tissue can absorb the excess fluid that seems to have become a permanent fixture on my face.

Has anyone else had this problem?

Aside from that, I’ve had two relapses of the “pain” that the Eagle Syndrome was triggering. However, the first time it was just a dull throbbing, the second time is was barely a thump. No more sharp, stabbing pains while trying to swallow food or swallow in general.

In time they hope I am unable to feel it at all, once my face and neck are back to normal.

I honestly don’t know what to think at this point. The surgery was worth it, but I wish I had been better prepared for the aftermath. If you are considering the surgery, please make your surgeon go into detail about what the recovery should be like and what kind of complications to expect. I spent so much time worrying about all these strange sensations after the surgery that made me want to run to the ER.

Thankfully, this forum helped me get through the worst of it! I’m grateful for this site and what you all are doing here!

bakari86 -

I’m so sorry for what you’ve gone through in recovery. ES surgery is major surgery & does take a couple of months to a year for full recovery of nerves & from ES symptoms. As far as your incision goes, it’s very unfortunate that you were not sutured or glued. I was sutured w/ dissolving sutures & the incision healed up pretty nicely in 6-8 weeks. I wouldn’t be too concerned about how yours looks at this point. It will still require some healing time. I had a hard lump at one end of mine that I figured would be permanent, but my scars are almost invisible now.

Using moist heat (warm wet washcloth) on your incision sounds like a good approach to stimulate blood circulation to the area which will in turn help drain the lymph fluid collecting under your incision. I’d do that at least 2x/day if I were you. I suspect in another month you won’t even notice the incision much.

Your ES symptoms may yet come & go a for awhile but the fact that they’ve already diminished so much is a good sign of better things to come.

We’re so glad you’ve been encouraged & helped by this forum. That’s what we like to hear. We’re always here for you.

I didn’t come to terms with this being a major surgery until after it was done. The lead surgeon (who is very well respected and ultimately I feel did a great job) most likely understated the risks because I have an anxiety disorder. I notice that many doctors downplay things around me once I tell them I have panic disorder and PTSD.

I don’t blame them for choosing this tactic, but I wish he had explained this was not just some simple procedure. Google didn’t have much to say and I honestly thought it better not to do too much research so that I wouldn’t be anxious about the procedure. He honestly made it sound like two snips and you’re done.

If they end up operating on the other side, I’ll at least be better prepared.

I’m so glad you experienced the lump too. Well not that I’m glad it happened, but that you have experience with this. It makes me feel more comfortable that my doctors have me on the right track!

Thank you again for everything! I’ll be patient with my recovery and try and continue following the doctors orders. :slightly_smiling_face:

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Sounds rotten for you, not heard of that happening to anyone else…hope the lump does smooth out. But good that the pain is easing! We do try to prepare people on here for what to expect after surgery, but it’s difficult because everyone is different & there does seem to be quite a few different methods of surgery. And I do think that some doctors genuinely don’t realise themselves what the recovery is like!
Keep strong & you shoukd still see improvements with time!

Hi I am 3 weeks postop for left sided ES 3 1/2 inches, a monster intertwined with 12th nerve. Dr. Petruzzelli from MHUS did a great job with my surgery, however I was not prepared for the severity of the surgery. I have speech problems & swallowing problems on the left. The surgeon took me back to surgery to make sure there were no nicks in the 12th nerve, thankfully not. The speech & swallowing is supposed to gradually get better. I went home the next morning with a drain and two separate wounds with Steri-Strips. All my ES symptoms are gone!!! The postop phase is a killer. I was sent home on Tylenol & Advil, 1 50 mg Tramadol every 6 hours- no where near enough to handle postop pain. I was already on the Tramadol, 2 tabs. I was in a lot of pain in ear, jaw and neck. I went to my local physician, he checked the drain, my wounds and gave me a script for Percocet. I had drainage starting at 50 cc down to 20cc,it stayed in for 2 weeks. This is a lot, I apologize. I am glad it is done.Surgery that involves shaving the styloid from the base of your skull, incision behind and through ear& down the neck, with a second incision to the hyoid bone in front of neck is not for the faint of heart!!! My surgery was worse because my calcified styloid was so big, so hopefully everyone else will do better! Thank you for this site, I got very useful information here I didn’t get from the surgeon.

Pindergirl67,

HOORAY IT’S DONE! You’re body is now working at healing! I’m so glad your ES symptoms are gone. That said, you may notice an occasional step backwards as you heal. The post op swelling can recreate some former symptoms during recovery. Do NOT be discouraged if this happens. They can come & go but finally go for good as time passes.

Would you recommend your surgeon’s name & contact information be added to our US ES Doctors’ List?

It sounds like your surgeon was fairly aggressive w/ the incisions, but I’m glad he was thorough. Every doctor seems to have a slightly different approach. Icing your incisions (yes, even still) may help w/ pain & management of swelling - 15 min. on & at least 45 min. off. If ice makes things worse, then try moist heat (damp washcloth in the microwave for 15-30 seconds or dipped in warm water).

Good for you working w/ your PCP when your surgeon didn’t give you what you needed for pain management. Percocet was my friend for 6 weeks after my first ES surgery. By the end of that time, I was only taking a half a pill once a day, but it was nice to have it available.

You may be doing this already but, if not, you can start now - Sleep w/ your head elevated for the first month or two to help reduce swelling. My doctor recommended 30º head elevation which worked well for me. I hope you’ve had family or friends available to help you. The best thing you can do now is listen to your body & rest when it says you should. Ease back into your normal activities a little at a time. These things will help w/ a quicker recovery.

Thank you for sharing your surgical experience. I hope you feel a little better each day going forward. You know we’re always here for you & are thankful you’ve found help from this forum.

:hugs:

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Glad that the surgery is done & that yiu’ve noticed an improvement in your ES symptoms already. Sorry though that yiu’re still in pain, & that you have speech & swallowing problems- I’m sure that these will improve soon; get lots of rest & keep up with the painkillers…take care & will pray for swift healing!

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Hi Isaiah, I am now 27 days postop. I am better, but still weak & have very little energy. Thank you for all the tips you gave me. I slept with the wedge pillow through last week, it helped tremendously, icing also helped, though difficult with the kind of ice pack I had, but very grateful for the suggestion. Thank you for the info about first bite pain, it will bring you to your knees! At least I knew what it was when it hit due to your info. I am disappointed in my surgeon’s postop care. I think he is competent but lacks communication skills. I was discharged at my 2 week visit and told if I needed pain meds to contact my PCP. I had already seen my PCP at about day 7 due to the pain, Dr. Petruzzelli only gave Tramadol. I still have swelling & a lot of numbness which is understandable. Anyway my main point today is THANK you . If it wasn’t for this site I would have suffered a lot more. Your tips & information are lifesavers!

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Hi Pindergirl67,

I’m so glad you’ve found good help, advice & support here!

Your energy will come back. Our bodies keep us down while they’re doing the “heavy lifting” of healing from major surgery. When they feel it’s far enough along, our energy returns. It took a full two months before my energy came back after my first ES surgery. I felt like I would drag around forever, but one morning I woke up & said, “Hey! I feel pretty good today - normal even!” Now, it doesn’t happen like that for everyone, & my energy level was probably increasing gradually over that time, but I did have an AHA type moment where I truly noticed feeling like my old self again. I was 58 when I had my surgeries so not at an age of quick healing, but I was healthy & had a good mindset which I think helped me get back on my feet so completely. I also had good family & prayer support which were likely the most beneficial.

I totally “feel” your first bite syndrome pain. I’ve been there & still have an occasional “bad” day where it’s fairly intense. Happily, however, I also have days where I don’t notice it at all. Even w/ FBS as a leftover, ES surgery was soooooo worthwhile!

I’m sorry your surgeon was so quick to send you off to your PCP. That is unfortunate. If he did a good job & your overall outcome frees you from your ES symptoms, we could still add his name to the ES Doctors’ List but with a note that he releases his patients into the care of their PCPs soon after surgery.

I will pray for you to notice positive changes toward healing day by day.

:hibiscus:

Hi Isiah, I wanted to give my surgeon information: Guy Petruzelli, MD, Otolaryngologist, ENT, Board certified. He is a part of Memorial Health University Medical Center in Savannah, Georgia. His phone is 912-■■■■. The address is 4700 Waters Avenue, Savannah, Georgia. He is knowledgeable about Eagle Syndrome and I feel did a great job with my surgery. Memorial is a wonderful teaching hospital, very caring and attentive staff. I am postop day 40. My energy level is getting better every day. I still have swelling on my left neck & some pain. First bite is way better! This website and you guys have given me so much great information. It is nice to know there is a qualified surgeon in South Georgia who treats Eagle Syndrome. Hope you are doing well. Pixie

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Hi Pindergirl67,

Thank you so much for this information! I’m excited to read that you’re doing so much better especially by day 40! That is wonderful news!! I’m very happy to be able to add a doctor who’s in Georgia to our Doctors’ List as we currently have none. SewMomma is also in Georgia, but her surgeon is moving out of state this summer so we will add him in his new location which will be PA - far from GA unfortunately!

It will take some more time for you swelling & pain to subside. I felt pretty normal by 2 months post op but it wasn’t till 6 months post op that I was truly my “old self”. I was 58 when I had my ES surgeries so not at a rapid healing time in life.

Thank you again for the doctor information. Please stay in touch & let us know how you’re doing as your healing progresses.

:two_hearts:

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That’s great news & really glad that you’re doing so much better! Always good to know about successful surgeries & the surgeons!