Successful Surgery for severe Vagus Nerve Compression

General Eagle Syndrome Stories
1

I am a Rare Warrior and this is my battle story! In August of 2021 I was diagnosed with Eagle Syndrome. February 16, 2022 I had a successful external bilateral styloidectomy. An unresolving case of laryngitis led to my diagnosis but I was sick for 20+ years with a vast list of symptoms no one could figure out. I became bedridden around the same time I was diagnosed.

I had severe compression of the Vagus Nerve with no vascular involvement. Neither of my styloids were excessive, 3.2L and 2.6R but they were killing me!! My left side was always my worst side. I sustained a significant injury to the left side of my face when I was a teenager. I couldnā€™t find anyone who believed my crazy and seemingly unrelated symptoms and I went through many doctors on the doctors list before I found someone who believed me and believed my symptoms. All the other doctors told me it was Glossopharyngeal Neuralgia, and it wasnā€™t. Most of all, no one believed the laryngitis was related to Eagle Syndrome. Dr. Trevor Hackman at UNC Chapel Hill Medical Center was my surgeon and initially, he didnā€™t believe the laryngitis was caused by Eagle Syndrome either! In my research, I learned the lower branch of the Superior Laryngeal Nerve branches off the Vagus nerve and runs right into the back of larynx. Of course I immediately sent the image I found to Dr. Hackman through MyChart. He politely thanked me and said "The answer will come if these symptoms disappear after the styloid is removed.ā€ Well it did resolve following surgery and he now recognizes laryngitis is a true symptom of Eagle Syndrome.

He also notes that more patients are telling him about their gastro issues resolving.
My severe vagus nerve compression affected my gastrointestinal system, my cardiac system, nervous system - basically my entire body. They refer to the vagus nerve as the wandering nerve because it runs from your head to your lower legs. My list of symptoms that I sent to Dr. Hackman prior to my surgery follows:
*Symptoms in each category are listed in no specific order as of 1/26/2022. Recent and worsening symptoms which intensified July 2021

  1. Tinnitus (low tone)
  2. Nausea - increases with movement, too much activity; related to vagus nerve irritation
  3. Feeling of abscess or sore on the back, lower left side of my larynx where the lower branch of the superior laryngeal nerve attaches/runs through it
  4. Laryngitis/hoarseness *worsens with activity/too much talking; also when I turn my head to the left
  5. Feeling like something is poking me in the back of my throat
  6. Cough due to irritation in throat that is significantly worsened by activity and heat
  7. Intense coughing causes me to feel like Iā€™m being strangled, mostly around the larynx, lower throat. That leads to gaggingā€¦
  8. Gagging and vomiting will follow the feeling of strangulation if I donā€™t stop immediately and rest
  9. Heat intolerance (not hot flashes, they are very different than this)
  10. Possible vascular involvement?
  11. Light headed, dizziness; those arenā€™t quite the right words. This is a peculiar feeling I have not experienced before *I started using a shower chair because of this wonky feeling Brain fog
  12. Higher than normal blood pressure; 1570/90 at appt with primary care doc 10/21/21; resting pulse was 68 *hbp has never been an issue for me until recently. I can feel the physiological changes when itā€™s running high. Highest recorded was 174/110
  13. Heaviness across top of chest due to vagus nerve irritation
  14. Tightness in chest then begins and Iā€™ll have a feeling like I canā€™t breathe but I can take a deep full breath with no problem. Pulse ox numbers are always normal. *tightness/heaviness will usually resolve after approx 30 min if I lay down quietly and rest. If I push through, the discomfort all around is triggered and it can take hours to quiet it all down
  15. Pain in left shoulder straight down through top left side of the chest, related to vagus nerve irritation (like a piece of rebar shoved straight down through my shoulder)
  16. Lifting more than 10 lbs aggravates vagus nerve and causes severe chest/shoulder pain that resolves when I lay down and rest
  17. Sensation of a lump under left side of tongue
  18. Twinges of a nerve sensation going up the left cheek; moving from the jaw upwards to the front of the ear/cheekbone
  19. Tingling, numbness, stuffiness (no pain) in my nose. May be related to pressure on ECA or Hering nerve
  20. Pressure headaches
  21. Vertigo, mainly positional; Cannot look up, causes immediate, severe dizziness, nausea
  22. Increased mucus/saliva *Iā€™ve been struggling with a dry mouth the past 4-5 yrs and now the last few months, my saliva is back. My mouth is not nearly as dry at night as it used to be!
  23. Silent acid reflux started approx 5 yrs ago; acid damage to a tooth required dental implant
  24. Pain deep inside, across my upper abdomen into upper right quadrant; can radiate to the back, up and under the right scapula; my heating pad usually offers the best relief for this deep, inflamed ache/pain. I could almost draw a lightening bolt type of line across the front of my abdomen where this flares up. Abdominal branch of the vagus nerve
  25. Sphincter of Oddi related pain issues, related to vagus nerve irritation?
  26. IBS, loose bowel movements daily related to sphincter of Oddi or vagus nerve?
  27. Pain in URQ, chronic requires pain medicine **Could this be related to vagus nerve irritation??
  28. Pounding heart when resting
  29. Racing heart when resting
  30. Severe cardiac pain, similar to heart attack (all cardiac tests are normal)
  31. It feels like metal skewers are pierced through my larynx. Sensation will eventually go away when I lay down quietly and rest
  32. Feeling of butcher knives being stuck into my neck and up under my chin
  33. Bowels shutting down, related to vagus nerve
  34. Insomnia

ALL of my symptoms except tinnitus resolved following surgery. Dr. Hackman was stunned. He said as sick as I was, he thought Iā€™d be lucky to have 6 or 7 symptoms resolve. When I asked him how my case compared to others, he said I had the worst case of vagus nerve compression heā€™s treated so far.

I took pain medicine for 15+ years because of the pain in my abdomen. Literally overnight, the pain was gone. My blood pressure and heart rate returned to normal before I left the operating room! I suffered wicked bad gastrointestinal issues that was ā€˜diagnosedā€™ as IBS with diarrhea. My gallbladder was removed in 2003 but the symptoms I had continued. Since my styloidectomy surgery, my bowel movements are normal and formed, my stomach pain is gone. Within three weeks of my surgery, I was off all prescription medication except gabapentin (which I stayed on for three months to help the nerve healing) and Pantoprazole that I take for stomach acid. Now I know ALL of it was caused by compression of my vagus nerve.

Following surgery, the lower half of my face was paralyzed, the nerves around my eyes were wonky, and my muscles were in an early state of atrophy (they call it ā€˜muscle wasteā€™) from being bedridden. It took months of intentional work to regain my vagal tone and vagal health. I read everything I could about stroke patients and Bells Palsy patients and how they healed their facial paralysis. No one seemed to be able to tell me anything to do so I figured it out for myself! I got my pucker back on day 9 and the overall paralysis took a little over 6 months to resolve.

I will share more of my healing journey and what I have learned about healing after surgery for Eagle Syndrome. I consider myself a miracle, there is so much more to my story.

I am a little more than 2 1/2 years out from surgery and I have a few lingering issues, mostly related to nerve healing. IT IS SLLLOOOOWWWW. (Get your mind right about that before surgery!!) My ears are super sensitive to the cold and especially the wind. At times it feels like I have clothespins clipped around the outside edges of my ears.
I found heated earmuffs last winter and those changed my world lol

This isnā€™t a little surgery where two weeks later your incision is healed and youā€™re back at it. No one talks to us about ā€˜the afterā€™. Most doctors donā€™t understand this healing, most donā€™t understand the vagus nerve component as it relates to ES, even the physical therapists are stumped as to how they can help. Iā€™ve done a combination of:
CranioSachral therapy for facial release
Fascial Counterstrain for fascial release throughout my body
IMT
Jin Shin Jyutsu
Visceral manipulation for the gastrointestinal issues
Zero balancing
Red light therapy
Manual Myofascial massage
Lymphatic drainage
Tuning forks on the mastoid are amazing!!

Feel free to ask me anything - I want to share everything Iā€™ve learned because the more we know, the more the doctors learn from us!!

My healing was miraculous. I am incredibly thankful and grateful for all the people in this group and our ES Facebook group who supported and encouraged me before and after my surgery. You all gave me HOPE and that sustained me through the darkest times. You all hold a very special place in my heart :heart::sparkles::eagle: AM

10 Likes
2

You have been on a journey. I think I am also having a vagus nerve issue that may or may not be related to the styloids that are too wide and too long. Did you get any testing that showed the vagus nerve issue. Also, did you ever have a tilt table test for it?

2 Likes
3

Hi, glad it went so well. Did Dr. Hackman do anything special for the compression? Or was it just removing the styloids that allowed the nerve more space? Thank you for all the post-op suggestions, a lot of my most annoying symptoms are related to Vagus issues I believe

2 Likes
4

I did not have the tilt table test. Dr. Hackman based my diagnosis on the ct scan and my extensive list of symptoms. There is some excellent information in this article. It helped me understand that more of my symptoms than I realized were due to the vagus nerve compression. It explains how it impacts every system in your body. It made my symptoms make sense!

https://www.sciencedirect.com/topics/neuroscience/esophageal-plexus

1 Like
5

He removed the styloids at the skull base. That was it. Have you had surgery yet?

6

I suspect no one has really looked into whether results of a tilt table test has a connection to Eagle Syndrome. I passed out and heart stopped beating. I wear an OURA ring and my HRV is showing I am stuck in flight or fight when sleeping but it may not be accurate at all.

3 Likes
7

Good to know. I have left side scheduled with Dr. Caughlin on 11/11, also removes to skull base. Right will be mid-January

3 Likes
8

Wow, @GrnyAny , thank you so much for posting this, and updating us! I am so glad that surgery has resolved so many issues for you, itā€™s incredible! We are becoming more aware of vagus nerve involvement and are seeing more members with symptoms, it helps to have such an informative post as yours that we can refer to as with some symptoms weā€™ve not been sure before. The sort of dizziness/ wonky feeling is interesting as that seems to be common with IJV compression, Iā€™d not realised it could be nerve involvement except for the vestibulocochlear nerve maybeā€¦Iā€™m glad that Dr Hackman is aware of vagus nerve symptoms now too!
Hopefully your post will encourage others, and also make members aware of how long healing can takeā€¦
Thank you again :hugs:

3 Likes
9

Iā€™ve added a link to your post in the Newbies Guide Section about vagus nerve symptoms as itā€™s so informative :+1:

2 Likes
10

I was also diagnosed with severe vagus nerve compression!!! I have surgery scheduled with Dr. Hepworth next month but I just returned from getting a muscle biopsy through Dr. Ruhoy in Seattle and do not think the results will be in on time. We may have to delay my surgery.

2 Likes
11

Thank you for posting your journey and for your frankness about your GI issues. I have been suffering with what I call ā€œbuttā€ issues since about 2018. I donā€™t have formed poops, I feel like I donā€™t empty my bowels and then spend the day dealing with mild leakage. I had my first styloid on the left removed intraoral in July - I would have 5-6 days at a time of normal bowels. After about 5-6 weeks returned to the ā€œbuttā€ issues. I told my surgeon about the resolution and that I believe it has to do with the vagus nerve. Well, he didnā€™t necessarily believe me, but, that is okay - I just need him to take the other one out. Keep us posted about your journey!

2 Likes
12

11/11 - thatā€™s a good number! Keep me posted on how it goes :heart::pray::eagle:

13

Thanks for the kind words Jules :heart: I am trying to get Dr. Hackman to classify a third kind of ES - Vagal ES. Itā€™s very different from Classic ES and Vascular ES. I will share more of what Iā€™ve learned and what I still practice to maintain my wellness. My physiotherapist told me the vagus nerve on my left side feels ā€˜shreddedā€™ and the right one feels ā€˜severely bruisedā€™. Imagine that pointy little styloid every time you move your head, tearing and pressing on the nerve and vessels in that area. Iā€™ve read a ton about nerve healing and it can take years to heal but they can heal.

1 Like
14

Oh no, I hope it isnā€™t delayed. Thatā€™s frustrating! What is the muscle biopsy for if you donā€™t mind me asking.

1 Like
15

It never ceases to amaze me how little doctors know about the vagus nerve and its impact on our body. I used to take 12 Imodium a day, 5 days a week, thatā€™s how bad my issues were. I now know they refer to that as ā€œdumpingā€ and itā€™s because your vagus nerve is stressed. The abdominal pain I experienced was similar to pancreatitis and I was hospitalized several times because of it. Iā€™ll share more about the gastro side of this in another post. This is a wonderful article about the vagus nerve and how it impacts the different systems in your body. This article really helped me figure out that my symptoms were mostly vagus nerve related: Esophageal Plexus - an overview | ScienceDirect Topics

Share it with your doctor! Maybe it will open his/her mind to the possibilities. There are things you can do to help your vagus nerve until your next surgery. Breathing exercises, sunshine, cool showers, splash cold water on your face throughout the day, listen to music, stay hydrated, eat what you can when you can, interact with family and friends. It sounds silly but the vagus nerve regulates the parasympathetic system which controls everything in our body. These things help when you practice with with good intention.

3 Likes
16

Who diagnosed your vegus nerve issue. I suspect minenis as well and I am scheduled for surgery with hepworth as well.

I have severe gastrointestinal issues, including a constant neednto eat like i am having a hypoglycemia attack.

17

Hepworth. I believe its pretty severe based on his interpretation and speaking to Sarah.

18

I would not mind if it is delayed due to not having the full picture yet. The biopsy was much needed and should have been done years ago. It is for my abnormal emgā€™s. I have had denervation issues for 15 years.

19

Just jumping into this thread now. WOW! Thereā€™s a lot of great information here & many eye opening comments. Thank you all for what youā€™ve written! Iā€™ve also had vagus nerve challenges for years but not to the extent of some of you. Mine reduced after my styloidectomies, but some still remain. They are heart rate, bp, breathing & voice related. It wasnā€™t until I joined this forum & learned a bit about the vagus nerve that I realized the intermittent stabbing pain I get in my heart is probably vagal in origin. I used to think I was having a heart attack, but just as for some of you, my cardiology tests always came back clear. It was a relief to have an explanation for it.

I see thereā€™s a line-up of us awaiting surgery with Dr. Hepworth. I am praying we each will have the best possible resolution/reduction of our symptoms post op.

@GrnyAny - Thank you for the link to the Esophageal Plexus article. Iā€™ll read it with great interest. Iā€™m so glad you came back to share the results of your surgery. I say, ā€œAMEN!ā€ to your comment about nerves being slow to heal. I still have First Bite Syndrome from my first ES surgery in 204, & after 10 years, itā€™s continuing to occur less frequently & become more mild. I would have never considered that nerve healing would continue after that many years!

2 Likes
20

Do you remember approximately how much the bill was from Hackman before insurance reduction. I am trying to get a handle on cost if there are no complications. I know many of you are able to do this on outpatient basis but mine will probably require an overnight hospital stay due to complicated issues with me which will significantly add to my cost. I donā€™t think it is prudent for me to have both done at the same time given my age and other issues but I need a starting point. I saw someone else post an estimate from Hackman that was in the $45k range after private pay discount. But an estimate can really be off by a significant amount.