I’m so glad you’re feeling better, @gramos! The “roller coaster” of symptoms will take a couple of months to go away, but I bet they will with time. I also hope you don’t have TOS. Recovery is a “wait & see” game of patience.
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Hi @gramos. I was just reading over your last post and wondered how you are getting on? Have your tachycardia and chest pain symptoms remained or are you having a better time with things? I hope all is well.
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I felt it important that I respond to your concerns due to the fact that beginning in 2021, I too began having issues with Gerd and what I believe to be anxiety due to increased heart rate, etc. In addition, I started to have chronic sore throat and Laryngitis. I went to a G.I. to get treatment for GERD and found out I had ulcers. However, once the ulcers were resolved, the other symptoms continued. I receive medication for anxiety and continue to take Nexium And Carafate for my stomach. Yet, my throat issues continued, and then I began experiencing sharp stabbing pains on the right side of my neck. Also dizziness with any type of activity.
I received a CAT scan of my neck and throat and the radiologist report stated no abnormalities. However, the stabbing pain and choking and sore throat continued. My PCP recommended a specific ENT surgeon in another city and state and I went for that appointment. It took four months to get this appointment. However, he immediately told me that I had Eagles Syndrome. It happened that an oncology ENT surgeon was his friend and they had discussed Eagles syndrome. In less than a month, I had surgery through the mouth on the right side. I experienced much relief and the stabbing was no longer an issue, but continued with the racing heart, etc. Then, in 2023, two years later, I began experiencing the same pains on the right side as before. I returned to the surgeon and he referred me to a radiology oncologist, and they stated that it was unheard of for the symptoms to return once the surgery is completed. However, I knew how I felt and I knew something was wrong. I was prescribed gabapentin for nerve pain and that presented a challenge as I would have to travel 3 1/2 hours every month just to receive the medication and it actually did not completely relieve the stabbing pain. I stopped taking the gabapentin, out of frustration. I just suffered through the pain. Then,in May 2024, my left side began getting worse, my stomach issues continued and heart racing increase. I was barely able to talk, and when I did, it was painful. I began to become extremely dizzy upon standing, so many symptoms! I contacted my PCP for a referral and it took two months just to get a CAT scan approved by my insurance. All of this time, I am having to live my life and suffer tremendously. I am sure you know exactly what this feels like. Once I receive the CAT scan and in very short order, I received an appointment with the original surgeon who conducted the first surgery and they stated that both sides needed surgery because the right side had developed calcification and the left side was a elongated, as we already knew and also had some calsifacration. On October 21, 2024, I received the surgery through the neck on each side and to this very day, I am still recuperating and experiencing dizziness and tremendous pain in my neck and throat, but, I can tell that I may get a great deal of relief from all of it when I heal completely. I went for the surgery, thinking it was same-day surgery and woke up with tubes coming out of my neck for drainage and told I was going to be spending the night in the hospital. it’s been a long recovery process, but as I said, I can tell that there will be some improvement and will definitely let you know if it was worth the surgical route. Remember, if your styloid process is elingated, it can be dangerous if you begin having stabbing pains and numerous symptoms. No one wants surgery, but, in my case I tried everything and I believe that surgery, for me, was the solution. I hope you find your answers and advocate for yourself. Look at the resources on this particular site that are labeled patient advocacy, because it may help you advocate for yourself and then you have to put your trust in the surgeon and ensure that they are very experienced with Eagles syndrome. Best wishes…
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I hope that your surgery is successful this time @Robinevalon , it’s good that you accept you need to be patient with the healing process 
that it helps with your pain
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Hello guys, sorry for not updating my state but I somehow intentionally didn’t want to complain for all the symptoms I am still experiencing because I hope they will go away.
I am now at 3 and a half months post-op. And unfortunately I keep experiencing different symptoms each day, it’s even impossible to keep track of them.
My first two month of recovery where somehow steady, my 3 month a this one are completely rubbish.
I have the tachycardia episodes back for which I got back on beta-blockers which seems to keep it a bit under control.
My new symptoms the pain on my right side of abdomen is intermittent and sometimes it is very intense which is associated with high HR. I am suspecting I have other compression on my abdomen which is now worsened after surgery. I just don’t know why this was not happening before. And I don’t know what I can do for it for now since there is very little chance I can get any help in my country! My plan is to do a full body MRI/MRV and find any doctor online and try to rule out things like MALS, SMAS NCS etc which seem very likely on our community. The reason I think this might be another compression is that sometimes I feel pulses in veins from behind my back and goes to gallbladder area then continues down to my buttocks and thighs. It could also be a combination of nerves and veins, I don’t really know. I am trying to figure out if food is playing a role here, but I usually get these episodes after eating breakfast!
Other worsened symptom is TOS on my left, this also is intermittent I notice this one gets worse when I get inflammation on my left side of surgery.
I get also weird feelings on my legs, something like when numbness starts but is not numb, tingling etc.
Still getting burning on my spinal cord which really frightens me but this happens once in 2 weeks maybe. It’s a feeling like my spinal cord is so tight it gets all the body, but these feelings resolve after 30 mins.
Still lots of tight muscles or tissues around neck and tinnitus is still there. I barely get 1-2 hour of activity daily, if I do more my muscles around incision get really tight.
For recovery I do some simple isometric exercises, self-massage around incision area daily 30 mins walks. Bought a massage gun for my body muscles, red light therapy. I am also taking some Vitamin D and B-complex supplements
So basically I am worse then prior to surgery still , pretty lost what to do next except waiting and hoping that after some more months I start to feel more stable.
I have asked my Dr at 2 months mark but didn’t really get an answer. Except we have to wait to see how this evolves… didn’t get any instruction on how to proceed further.
So at this point I am completely lost if I have done the right decision but I don’t have regrets since we know from the beginning this doesn’t have any guarantees.
I am a little concerned about the fact that my surgeon didn’t remove to skull base and also left some bone fragments unintentionally for which he thinks now can’t do any harm. I will attach post-op CT scan photo.
I know people that chose Dr. Kamran have already reached to me so I will tag them to read this message as a reply to them. @Val7426 I also communicated with @stylocarotid who I think is doing much better then me even though he was worse post-op. And @Bowser who I think is still struggling unfortunately.
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Thank you @Robinevalon. Sorry to hear about all your struggles as well. FYI I have done bilateral surgery and C1 shave couple of months ago but am still struggling. Check the update I just posted.
Hope you gonna do great now after second surgery.
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I’m so sorry that you’re not doing so well after surgery, awful to go through everything that you have done & to not see improvements 
I don’t know if it’s the scale in the images, but your mastoid bone looks pretty big, it is larger in men, but even so it looks to be bigger than other images I’ve seen. I don’t know if that could be anything to do with any of your symptoms, whether it can impinge on the vagus nerve I don’t know…I had a look online & other than saying that it’s the attachment point for muscles like the SCM (which we know can constrict structures in the neck), & can get infected causing ear pain, there doesn’t seem to be much info, so it might not be at all relevant, here’s a link:
Mastoid Process: Location, Anatomy, and Treatment
As well as TOS, May-Thurner syndrome, and Nutcracker Syndrome seem to be quite common with ES, as you say, so whether anything like that is causing some of you symptoms I don’t know…unfortunately more rabbit holes to explore
Re your TOS worsening with inflammation, that doesn’t surprise me really, I think any inflammation can affect ‘weak points’, for example whenever I get any virus, even just a cold, I find the area where my styloids used to cause pain flares up again for a few days, so this could be happening with you…
If you’re able to get the scan done, have a look at Kjetil Larsen’s site, he’s very knowledgeable about many conditions and does seem to spot conditions that radiologists miss (although I don’t know if he looks at the whole body or just head and neck), but it might be a helpful resource to get your scans read:
Home - MSK Neurology
Some members have had tethered cord syndrome too, another possibility with the sensation you’re getting in your spine maybe?
Are you able to see anyone for massage or dry needling of your tight muscles? Some members have found that helps…
But please don’t feel you can’t come back to complain, we’re here for everyone. Praying that you’re able to find some answers
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I agree with @Jules on all accounts. I’m so sorry for your continued symptoms.
I applaud you for making this statement. We all go into this surgery with high hopes of coming out much better once we’re healed, but sometimes, there are other problems that surface once the styloids are gone so we question whether ES symptoms can mask other symptoms or if they all just join together in one confusing hard to diagnose mess which has to be unraveled bit by bit.
Until @Jules mentioned it, I didn’t notice your mastoid processes but they are longer than we usually see. It looks like one styloid was cut pretty close to the skull base but the other was left a bit longer. I had the same thing happen to me when I had my surgeries though your longer side is shorter than my short side is, I think.
Sometimes the styloids can’t be cut back right at the skull base because of the layout of the nerves so the surgeons get as close as they can without causing long term nerve damage. That may be what happened in your case. It would be nice if the doctors would tell us after surgery when they haven’t been able to do what we expect so we don’t find it out on our own!
I thought I remembered you had TOS surgery, but maybe that was someone else. If you did, then I’m doubly sorry that your TOS pain is flaring up.
I’ll also pray for you to find the best doctor to help you with diagnoses & therapies to help your current symptoms resolve.
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