Our son had his right side surgery yesterday. He is doing well. Dr. Annino said 3 nerves were compressed. He said this side was longer than the other and was removed in 3 sections totaling 5.5cm. He is glad we came back for surgery - said it was wise before he went to college. He is feeling pretty good. He also said the nerve that runs over his ear and behind his eye felt relieved of pressure. The flight up made his eagle syndrome noticeable- I guess due to pressure???
Quick question- Dawson experienced a rash that would come and go quite quickly after surgery 1 and again yesterday. Just wondering if any of you had experienced this. It does not itch. We told the anesthesiologist prior to this procedure about it. I will post pics here. Please let me know if you have ever seen this happen before.
So pleased that he’s been able to have the second surgery, and I hope he soon sees an improvement in his symptoms- that’s a pretty long styloid which was removed, definitely better out than in!
Re flying- the air pressure often exacerbates symptoms…
Re the rash- it looks quite localised- did they use any tape of anything during surgery? It’s certainly worth asking his doctor again in case he could be developing an allergy to some of the medication?
Praying for a swift recovery
Dawson looks amazing!! That was one very long styloid!! So glad he’s already got improvement in some symptoms. I agree w/ @Jules regarding possible causes of the rash, & contacting his surgeon is the best course of action. Sure hope it’s incidental & not a medication reaction. He’ll feel so much better once healed! Great decision to do this before he’s headed off to college!
We found out the vagus nerve - responsible for digestive issues and Heart rate was impinged- his heart rate is always very high and since surgery is back to a normal 50-80 bpm.
He also has suffered 2 weeks of constipation - in fact, we saw doctor for this before we left MIssissippi for Boston concerning it. Since surgery- no stomach issues and no constipation.
The hypoglossal nerve was impinged and it seems to control tongue movement. We do not know of any issues he had with that. But he did have a cyst removed from under his tongue and it came back again requiring a second surgery a few years ago.
The Spinal Accessory nerve was also impinged and that is what he has complained most with. With pain in his shoulders and traps. Scapula area. I can literally see that his shoulders appear to have relaxed and lowered -
Looking less tense.
Another thing we have noticed- Dawson had almost like a tick or epileptic eye movement that is now gone. He also said he notices less pressure behind his eye- which makes me think the occipital nerve may have been impinged as well.
WOW! That’s a lot of improvement so soon after surgery! I had intense eye pressure behind my left eye that was gone when I awoke from having my left styloid removed. It’s amazing how quickly nerves can “get happy” once the pressure is off, but don’t be alarmed if some symptoms are slower to recover because that is also the nature of nerves. I’m so glad for the great improvements he’s enjoying!
Brilliant you & he are seeing so many improvements already Will just add in (although I know he’s done this once already!) that the swelling can still increase & might cause a set back with some of these improvements so don’t be alarmed if he has some worse days
I am encouraged to hear of your son’s journey with ES and surgery! I just found this forum today, and I am excited to have a community that understands the condition. Since you mentioned that he is about to go to college, I assume he is just a little bit younger than me. Having Eagle’s syndrome is scary, and so is the surgery, so it’s helpful to see someone close to my age do it successfully! It looks like we have had a lot of similar symptoms. When did y’all start this journey?
I am hoping and praying for a quick recovery for him.
Where was his incision? Side of neck near ear or front by hyoid? I also have high heart rate sinus tachycardia and they can’t explain why. I have had my left side removed so far but need right side. What was impinging the vagus? The styloid or the ligament? My ligament is fully calcified all the way to hyoid bone. Wonder if this is my issue. I had a vagus nerve ultrasound. Right side they couldnt find. My left side it was super small.
To the last two who reached out… we are happy to help in any way we can. Our son has dealt with issues associated with this for a while and we hope improvement continues. We are quite relieved to have both out. We chose to do the left side first. It was putting pressure on his throat and making it seem the most urgent.
When we came to have the right removed we found it could have been causing more of the nerve issues than the other side. The Doctor said the angle of it was creating a very narrow space between it and the spine. This is the space several nerves pass thru.
Left side 5 cm removed mostly styloid bone
Right side 5.5 cm removed over half was calcified ligament. Cut is beneath the jawline. There is a second incision closer to the ear that was for the drain tube- which we are extremely thankful for- he has had very mild swelling!
Here are some repost photo of the first that was removed. We do not have a pic of the one just removed that had to be removed in three pieces.
I responded to you and another inquiry at the same time- please see that post. Bless you! We are from MS - so, closer to you. Let us know how we can help you.
I can’t believe the size of that. My surgeon told me that both of mine are over 4.7cm. I had my left side removed may 19th and I can’t believe how much better I feel already. I found my surgeon from Bay State Medical in Boston but lucky for me he relocated to Hartford hospital in Connecticut. He teamed up with an ENT surgeon for my surgery and they did an awesome job. The incision is barely noticeable and I had no pain from the surgery. This is my first time replying because I am not too good with computers. I tried a few times to respond but did it wrong. I think I have it figured out now and it makes me feel better that I have others who understand this Journey. I’m so glad for your son to finally get relief. If I can figure out how to attach a pic of my incision I will send it.
Good job posting your image. You can use the underlined up arrow in the menu at the top of the text box to upload images from your computer, too.
Your incision looks VERY good for being only 3 weeks old. It will really be invisible once it’s fully healed. Your surgeon did a great job! I’m so glad you’re feeing better.
Thank you so much for sharing Dawson’s story and telling me about this forum. Thanks to you I finally got a scan confirming what I have suspected for years–ES. As I begin to figure out what is next, your post is very helpful as I have so many of these same symptoms. My first appointment with a surgeon is late June at UAB in Birmingham, AL. Flying has always been excruciatingly painful for me since I was a teenager–I would suffer for weeks after and was treated for an ear infection most every time I flew. Now I know why. My hope is that I can get help without flying closer to MS and I will report my experiences with the group since this particular doctor does not seem to be on “the list.”
@MHBOLEWARE - We always welcome new doctors names to add to our list. We like to know that a doctor has performed at least a few successful styloidectomies (i.e. w/ good outcomes) before adding the name to our list so please ask your doctor how experienced (s)he is w/ ES surgeries when you have your appt.
If you search Questions to ask a number of posts will come up where that topic is discussed. Those will be helpful for you at your appointment as well.
@Carabear708 - I have no doubt that your elongated styloid/calcified ligament is toying w/ your vagus nerve since you have such extensive calcification. It sounds like you’ve been to a cardiologist who is perplexed by your tachycardia.
The right side of the vagus nerve is much less extensive compared to the left. Since you have so much calcification on the right, the vagus could be hiding under the calcified styloid/s-h ligament. I would wager that having that styloid/ligament removed & getting the pressure off your vagus nerve will make a huge difference.
Vagus Nerve Image.docx (81.7 KB)
wow!!! That is a biggy. So glad your son is recovering and seeing some substantial relief!
I know my daughter reacts to chlorasept (Chlorhexidine Acetate)…an antiseptic type thing used to clean areas of skin before inserting IV’s and the like. She gets a rash.
Your son looks in pretty darn good shape after all that. Even smiling.
How wonderful that he had his surgery…Praying for his recovery and that he will never have to deal with this ES! Thank you for posting the photos. My surgery was removal on both sides, at the same time through my mouth. That was back in 2006 and I am well and healed. Your son has his whole life ahead of him. Hope he heals quickly and that he will go on and do great things in his life…
Wow! this had to be so painful! I suffered for 17 years with ES and all I wanted to do was close my eyes and never wake up. I finally moved to Oklahoma and found Dr. Greg Krempl and he was able to diagnose me after I had been told it was all in my head! I pursued my healing and I finally had the surgery to remove both styloids at the same time through my mouth. I survived but, it took me 4 months to recover because I am a diabetic and we heal slowly. I am so glad that this is a new beginning for you. Best wishes in your recovery.
@Pcrowe - You’ve answered me before, how is your son doing regarding his traps. You said they were like in a constant muscle spasm? Mine are very uneven. My left side is killing me and I think this is what’s causing my issues. I just had surgery on my right side for severe jugular compression from the styloid. I have minor compression on the left, but I have more nerve pain that goes into the traps on that side. It’s horrendous.
Picture shows that my traps are so uneven. I have a normal looking side now on the right side that I just had my surgery on. I am 14 days out now.
How do you think your surgery went? I hope that some of your symptoms have eased?
I’m sorry if you’ve said before, but have you tried muscle relaxants? Some members have found Baclofen helps a bit?