YES! Everything you’re experiencing can be caused by an irritated vagus nerve (including anxiety level). I will post a picture of the magnitude of the vagus nerves reach in our bodies at the end of this post. That may help you understand how symptoms related to the vagus nerve can be so diverse & far reaching.
The fact that these symptoms have gotten worse post op could be explained several ways -
Even though you may not see any external inflammation left from surgery, there is most likely still internal inflammation your body is using to protect the tissues it’s trying to heal. If any of that is pressing on the vagus nerve then, voila - you get symptoms.
or
Removal of your styloid process has created an internal “imbalance” as one side is now missing & the other side is “weighed down” by a bone that’s longer than it should be & is poking/leaning on tissues that were previously free from that. There has likely been an internal shift of sorts that has changed how everything sits together in your neck & perhaps the remaining styloid is wreaking havoc w/ your vagus nerve now when it didn’t before.
or
Your vagus nerve was irritated during surgery & more time will be required for it to settle down & fully recover.
Remember our rule of thumb - “Patience must reign supreme during recovery.” It’s a very tough concept to abide by when pain & scary symptoms persist. There is nothing wrong w/ revisiting those by seeing medical specialists to get second opinions &/or treatments that help minimize the symptoms during recovery. As a matter of fact, that step can be mandatory to help one get through recovery. Some people do need to take pain meds of some sort well into the future. We have examples on this forum - Jules is one - who take nerve pain meds to keep pain & other symptoms at bay so life can be lived fully.
I am so sorry sleep continues to be evasive. I hope you can do the sleep study at home soon & for sure get a more solid ruling regarding sleep apnea.
I will keep praying for you to find the answers that will most help you now & that your body heals completely. FYI - my ES symptoms ramped up significantly after my first surgery, & it was due to my remaining styloid. Until that was gone, I was pretty miserable.
Thank you Isaiah! Its a crazy time for sure. Your input is helping me to stay grounded - or at least hover a little closer to the ground.
I am grateful that my boss is sympathetic for missing work from doctors appointments. Under healthy conditions feeling like this would have kept me home using a sick day.
Are there two vagus nerves - one one each side? I think this is what is confusing to me.
There is definitely still internal inflammation which I can feel by my hand on my neck and wondered if this could be causing issues.
You can see from the image that the vagus nerve does indeed run down both sides of our necks but there is a greater density of nerve tissue on the left side. I’m so sorry, but I’ve already forgotten which side you had removed. Your remaining styloid certainly could be tangling w/ the vagus nerve on the un-operated side.
So glad your boss is being understanding. I’m sure it’s hard for him/her to see you struggling like this.
oye! I had the left one removed. Great diagram. Looks like there are a lot of nerves that could could be tied to the aggravated nerve in my neck by the surgery. I can almost feel the nerve in my neck to the left side of my chest. I don’t have any chest issues on the right. This makes me think that it could be from the surgery and not the remaining right.
The remaining right might be the reason the top of my right eye is hurting more than usual.
I agree, ES is a nightmare. You can Google the cranial nerves that are affected by ES & click on the “images” link to get the visuals for each nerve. Know where they are explains a lot of ES symptoms.
Below is a list of cranial nerves that have been known to be affected by ES. Even the most experienced ES surgeons often aren’t aware of how diverse the effects of injured or irritated cranial nerves can be. That’s a major reason ES is so hard to diagnose. Looking up what each nerve innervates in your body is also very enlightening.
Practice perfect posture and try to massage all the tight side muscles. Walking with head straight above the head is great. Be aware of posture at all times, sitting or standing with the head forward is easy because the neck muscles are weak and that is kind of how Eagles pulled us. We need to reteach the muscles because all the muscles need to do some of the opposite of what they were doing in order to heal. PT will help some before the second surgery if gentle, but the real improvement will come after the second surgery. Amazing.
Oh and Yes, definitely the right eye could be from the facial nerve being involved with the styloid. I am now pain free after 3 years, but had a 5-8 week set back after surgery because the facial nerve was tight on top of the styloid and needed to be stretched. Still, now going in the right direction. Yeah. Floppy eyelid of two years gone and no more dry eye and daily pain. I still think my Glaucoma was caused by the Eagles, but that will never be proven in my lifetime, I guess. I wish no one else had to go through this. Hang in there!
Thank you Emma.
Its wonderful to hear that you are now pain free.
I think surgeons don’t want to address the nerve related pain and problems. Styloids are objects, nerves are abstract and too variable and they are in the business to removed the objects. They don’t tell you the real difficulty of recovery and downplay the post op problems - they do the surgery and walk away.
It’s interesting telling someone that my anxiety increased post surgery but they dismissed it as all in my head. It came in waves out of no where and I could literally feel it pass through the nerves from my neck to my chest and would pass as soon as it started. The central nervous system is less understood by most, including doctors.
I have pretty good posture. Before my surgery keeping my neck, shoulders and head straight was key. I noticed before and post surgery that if I spent/spend too much time during the day browsing on my phone (on a slow work day of course) that I would be in severe pain by the end of the day.
I am two weeks out for my second surgery for the right side remaining. I postponed this for as long as I could. With all of the post op issues I had my after my first surgery I was really hoping to not have the second surgery.
There was a brief period where I felt better, but my recent flare up is causing real havoc on BOTH SIDES. Most of the pre-surgery symptoms are back on the removed side: painful swallowing, nerve pain in my cheek and jaw, and shooting pain in my neck when I turn my head to look over my shoulder. The removed side hurts more that the remaining side. It has been said many times on this site that its not unusual. I hope and pray that when both are out that all will be well, but to go through surgery again to only feel this pain is scary prospect.
I also wonder if its possible that the st-hy ligament not removed in the first surgery has calcified and is causing the tightness, pain and nerve issues.
I am sorry to hear about your extreme pain but am not surprised. I went through the same thing. I was much worse off about 4 months after my first surgery than before because my remaining styloid was wreaking havoc in my neck. My second surgery ended up being 9 months after the first because I had a cycling accident w/ a head injury that prevented me from having the surgery at 6 months as planned. I was a basket case for the 3 months extra I had to wait. Even if you have post op struggles (which hopefully won’t happen this time), I expect that you’ll notice a world of improvement once the remaining styloid is gone. The results may not be immediate but a few months post op, you should feel like a new person comparatively.
As far as your s-h ligament goes, it’s more likely the elongated styloid causing a problem. If symptoms persist well beyond your second surgery, another CT scan to look at the ligaments might be worthwhile.
I gather you’re going with your original surgeon. What did you learn from the more local person you saw? (Sorry if I missed a post where you commented on that).
What is your surgery date? I’d like to put it on my calendar.
Sending up prayers for a perfect outcome & for you to endure peacefully until your surgery date.
Thank you Isaiah! It must have taken all of your will to get through crazy ES symptoms and a bike accident. You are a great example of what perseverance can accomplish. Thank you for your example and support.
Though I have read it all here before, I am very grateful to have the reassurance that my crazy symptoms are most likely from my remaining styloid causing havoc.
My second surgery, scheduled for December 9th, will be close to the 6 month mark from the first surgery. I am not going to back to Philly. Logistically for me, finding help and traveling, etc, caused too much additional anxiety. A member here recently had surgery with a head/neck surgeon affiliated with NYU Langone Hospital in NYC. He is on the list. I met with him and found him to be very knowledgeable, understanding and accessible. He does the surgery externally and removes the styloid at the skull base. He mentioned that he now does something different during the surgery that minimizes first bite syndrome risks (I dont know specifically what it is but I can find out). He also has a physician’s assistant that I can talk to any time I need or want.
I am thrilled to be having the surgery done locally. (If one can be thrilled at all to have surgery!) It takes a big chunk of the anxiety out of the way. Having the PA available anytime to talk to is another bonus.
Boy that sounds good, having someone to be a bridge between you and the doc. Perfect. Way to go trying to simplify your life and not travel. Your next leap of faith is coming up in 3 weeks
It must be scary having symptoms return, especially while thinking about round 2…I have to say that the 2nd side definitely ramped up for me but didn’t affect the 1st side. But if you think that the styloids, the stylohyoid ligaments, & the hyoid bone are all connected together in one chain, removing one part can perhaps imbalance some of the rest depending on the calcification- it doesn’t always happen but can do for some. It could be as some parts are heling on the 1st side, while the remaining side is in then maybe it’s tugging a bit & disturbing the healing process? It’s amazing (?scary?) too how infection or inflammation elsewhere in the body can seem tho aggravate symptoms, stress even- have you had a virus or anything?
I’ve put your surgery date down on my prayer list so I’ll be praying for peace & less pain beforehand & that your surgery goes well, that you have a less bumpy ride this time…God bless
@SewMomma@Jules This syndrome can have you second guessing everything, so at some point we take a leap of faith and trust in greater powers and skilled surgeons.
I have not had a recent virus but maybe overdoing it a bit. The fact that the surgery side is hurting so much is muddling the process in my head and yes, its scary. Some of the post-surgery numbness has come back as well as the nerve related pre-surgery issues . Writing this has me second guessing the process all over again. ES can have you coming and going all at once.
BG - I’m so glad you found a doctor closer to home w/ whom you feel comfortable. That is the best! It sounds like there is a good communication line for you there as well.
I put your surgery on my calendar & will be praying for you especially on that day. We have another couple of members who will be seeing Dr. Samji in the OR on 12/9 as well so you’ll be in good company (from a distance).
I hope these next few weeks seem to fly by for you.
Sending you a hug & my greatest hopes for a full recovery from ES.
On my end, I think that the seesaw type of pain from one side to the other has something to do with the muscles and nerves on one side trying to do the work of the other side while they are weak. My left side had the worst pain originally. Immediately after surgery for about 3 months it felt better, but the steroids wore off nerves came back and the right side hurt, but the left did as well, tightness and scar tissue still a factor. After the second side was done, it was silent and calm except for the eye because of the lid being wide open and dry cornea. When the nerves all woke up, the left side was not working overtime for the right and that is when everything started to settle down.
I still have some tightness on the right from scar tissue. My left side still has nerve problems from the popping jaw and loss of my chewing muscle. I have to massage inside the mouth and behind the ear a lot. Never should I try to chew almond or other tough nuts, but I do. I guess I will learn.
I think all the Eagles related pain is gone mostly. The only issues seem to be related to the arthritic and misaligned jaw, but I rarely need medication. Occasional occipital headaches, but c1 and c2 are unstable. I think that I have experienced a miracle healing. I pray that you will also.
I am having a bit of an anxiety attack. Since my latest (and not so great) flare up it seems that my submandibular glands on both sides are swollen. On the left, its just above the incision near the interior scar tissue. I have a call into the physician’s assistant to ask if I should see the surgeon again before my surgery.
I have done a quick search here on these glands and it appears in several blog entries and it seems the consensus is irritation from the elongated styloid. But why both sides? Could the scar tissue irritate the gland like the styloid can?
It is possible that I am fighting off an infection but I never had these glands swell up when fighting off infections -usually the glands under my jaw would be the ones to swell. I don’t have a fever but my body is cold and my face is red and flush. (Be careful when Googling symptoms!! I found there is a cancer where flushing is a symptom, but I can say its not that.)
I will post more after I talk with the PA, but knowing that I have a voice here is calming.
Your remaining styloid certainly could be tangling w/ the vagus nerve on the un-operated side.
