Surgery w/ Dr. Hackman Monday 1/6/25

[Jstilley]

Hello all! My name is Jenny. I’m from NC and have been fighting to find answers to some medical mysteries since at least 6/2022. I haven’t fought for nearly as long as some of you. Gosh I admire your stick-to-itiveness! I fought as hard as I could. After the first round of tests and imaging, they ruled out MS and essentially told me it was either psychological or CRPS. I kept fighting for more labs and tests. Nothing. Then in August of 2024, I had a wild experience that almost led to me passing out. I travel a lot for work and was in Dallas. I was in an elevator, turned to my left to say good morning to someone, and felt an intense rush of pain and heat from the top of my head all the way down to my left thumb. Needless to say- I was frozen in pain for the next two days. I couldn’t look up or down, couldn’t turn my head from side to side. It was miserable. Prednisone was called in so I could get on the plane to head home. Thankfully it helped enough for me to get home. I went to a few months of PT and nothing helped. I asked for a consult with a new neurologist. He mentioned TOS, SFN and ES. He quickly had me checked for TOS. That was negative. The vascular surgeon recommended I see an ENT. Luckily, Dr. Hackman is only 1.5 hours away. I saw him a little over three weeks ago and I’m scheduled for surgery Monday. I’ll be having a unilateral styloidectomy on my left side. My situation is not that my left styloid is long, but I have military neck and the angle of the styloid combined with the lack of curvature in my spine are the suspected cause of many of my issues. I’m on so much medication and in so much discomfort. I’m really hopeful for Monday and the months of recovery ahead.

My symptoms have been all over the place. Here are some of them:
Pain from base of skull to chest
Stabbing pain from top of head to heart
Left shoulder pain
Right hand numbness fingertips
Left arm pain
Numbness-left hand-middle-thumb
Right foot numbness
Left foot numbness
Left hand numbness
Left hand pain
Headache
Neck pain
Chest pain
Jaw pain
Facial numbness
Difficulty swallowing
“Pledge of allegiance” pain
Eyes burn
Dry eyes
Allodynia
Heat in feet
Cold in fingers
Heat in knees
Ice cold feet & hands
Right foot 22 degrees hotter than left
Blurred vision (with glasses on)
Dizziness
Dry mouth
Fatigue
Night sweats
Nausea
Loss of bladder control (1x)
Bowel ileus
Difficulty concentrating
Brain fog
Forgetfulness

Our guess is that I have a few things going on. If that’s the case, I’m looking forward to making off some of these symptoms and continuing the journey to get healthy.

Sooooooooo- I’d love your tips for surgery day and post-op. I’m self-employed which is a blessing and a curse in this situation. I definitely tend to over do it but my husband and my team are going to make sure I don’t rush my recovery. I’ve ordered the wedge pillow set, a bed desk/tray, silicone scar strips (vanity never sleeps), ice packs, grippy socks, protein shakes and soft foods. I’m updating my Nintendo Switch just in case I am stuck in bed at all (yes, I’m a 47 year old woman who still enjoys Super Mario on occasion). What am I missing???

Sorry for the novel! If you’re still reading this, thank you for your time and any advice you can give. I’m ready to move forward through 2025 with a few less annoying and painful symptoms.

[Isaiah_40_31]

@Jstilley - A number of your symptoms are those seen with vagus nerve irritation. It’s the largest of our cranial nerves & affects many of our body systems from neck to gastrointestinal system to bowels & bladder. Other of your symptoms point to trigeminal nerve irritation. It also sounds like you may have some vascular compression being caused by your styloid. I hope your surgery makes a HUGE difference in helping your symptoms resolve. Recovery is slow & can take quite a number of months w/ symptoms coming & going so patience is key. We’re here for you all along the way.

I’ll put your surgery date on my calendar & will pray for you on Monday.

[Jules]

Hi, and so glad that you’ve been able to see Dr Hackman and to get surgery with him! It sounds like there’s lots you’ve got ready, I’ll link the surgery shopping list in case there’s something you spot on there:
Surgery shopping list - General - Living with Eagle
You might need something for constipation in case- the pain relieving meds can cause that, a few members have found that out very uncomfortably!
There is some info & links to discussions in the Newbies Guide Section about surgery:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And you can always search for ‘what to expect after surgery’, although it sounds as if you’re pretty prepared! There will be ups and downs though, nerves can take up to a year to heal, so try not to be disappointed if lots of symptoms don’t resolve straight away!
As @Isaiah_40_31 says, it does sound like you could have symptoms from vagus nerve compression, here’s a link to a very informative post by @GrnyAny who had surgery:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
I’ll pray that your surgery goes well, and that you do see a big improvement in your health! When you feel up to it, let us know how you are

[Robinevalon]

Hello! Many of the people on this site, I have discovered, know much more than I regarding the medical terminology and specific diagnoses. Your medical issues seem to reach far beyond those that I experienced prior to receiving my ES bilateral styloidectomy. I am also aware that I am very late responding, as I know you had your surgery on January 6, 2025. I assume that you are recuperating as we speak.

I can tell you that looking at your list of symptoms, I definitely experienced at least 50% of those symptoms prior to my surgery. I started in 2020 with symptoms on the right side of my throat and experienced stabbing pain and choking episodes, headaches, numbness in my face and head, dizziness, ear pain on the right side, pain in my jaw and neck reaching down to include my clavicle. I must add that anxiety became a huge part of my life due to the pain and the fact that no one was hearing me. In 2021. I finally was able to get a CT scan in which the radiologist determined nothing was wrong. I had the benefit of having a PCP who is quite kind and listens to her patients, therefore, she sent my CT scan to an ENT surgeon that is only 45 minutes from our home. We got an appointment and as soon as I walked into his office, he said to me that I had Eagles syndrome. First, I was extremely relieved, because I felt that all of the people I had dealt with throughout the year had considered me a hypochondriac. The number of specialist that I saw during the year is limitless, neurologist that said I had migraines and prescribed Depakote, which caused trimmers and loss of some function functions in my body, NENT that cleaned my ears and said it was all due to a hole in my left eardrum, I can go on, but that gives you a sample of what many of us go through in order to get to our diagnosis. I have been very lucky, having read your story and that of many other people. He did tell me that both sides were elongated, the style process that is, But, considering I wasn’t experiencing any issues on the left side, he felt the right side may require surgery. However, he was unable to perform the surgery and he had a friend who was an oncology ENT in Louisville, Kentucky, and had experience with ES. Therefore, in 2021 I had the styloidectomy and the recovery period was quite short. He went through my mouth and all was well. Then, in 2022 I began experiencing pain on the right side again that included stabbing pain, and my symptoms returned, I attempted to get help and was prescribed gabapentin, but it was not working and was accused by a nurse of being a drug seeker. I am 68 years old and have been a professional and traveled with my work for 20 years, was never a person to take medications and certainly did not take drugs and I gave up after that happened. Then, I began having the same symptoms on the left side, and they were extremely intense, I couldn’t ignore it and requested that I get referred back to the ENT surgeon who originally diagnosed my Eagle syndrome in order to get another CT scan. It took six months for me to get the CT scan and finally an appointment with the surgeon who conducted my first surgery. They discovered that both sides had calcification of the styloid process, and it was determined that they would go through my neck on both sides. I had no idea what this meant and expected to return home the same day. We drove four hours, leaving our home at 3 AM, in order to get to Louisville for my surgery. I woke up with tubes coming out of my neck and bulbs hanging down for drainage. I was in complete shock and extremely confused and in a hospital room. it had been determined that I needed to spend the night and I was not aware that there would be drainage tubes involved. However, it was the right thing to do, on my surgeon’s part, he made a decision. It has taken me from October 21 until now, to recover to a point where I’m able to function on a daily basis. I still have slight pain on the right side and I do have a follow up appointment coming up soon, just to check on my progress.

I think you are more than prepared and probably way more prepared than I was! I did have to spend a great deal of time texting with family members to let them know that I could not sit and talk on the phone and was in no way able to constantly be available for them, as I usually am, due to the fact that stress is not great when recovering from surgery and it is a time to play Mario Brothers if you want to! I did not follow doctors orders originally and did do more than I should have physically and it was a big mistake because moving your neck a lot side to side or up and down can literally reverse the process. I had to learn the hard way, and just learned to be still. Once you have an opportunity to recover from the surgery and feel as though you have recovered as much as one possibly could, and you still have symptoms, document those symptoms, go back again and address that situation. ES brings with it many other medical issues and you’re doing the right thing in fighting for what you need. I know I didn’t give you advice, but I wanted you to know that if you get discouraged during your recovery and it sounds like you are a person who is very active and wants to work, I was that way when I was working as well, I also traveled with my work. I am lucky enough to be retired now and I still tend to do a great deal, make sure that you give yourself an opportunity to heal. Wishing you the best and hoping to hear how things are going. Peace.

[Jules]

How are you doing @Jstilley , how was surgery? Thinking of you & praying all’s well

[Jstilley]

Thank you so much for asking and for the prayers. Surgery went very well. I shared a video with the group so they could hear my story. If it helps just one person, it will have been worth it. My vision is a little wonky and the left side of my face is slow to react (my blinks are crazy sometimes - my husband said I looked like a creepy doll😆). But we expect that to work itself out. Honestly, if it doesn’t, I’m totally fine with it. I already am in less pain than I was before surgery. I know I have a long road ahead but I’m ready for it!

[Jules]

The facial weakness does seem to go after a little while, how kind of your husband to say you look like a creepy doll

[Jstilley]

He’s charming but he knows how to make me laugh. Now we’ve moved on to me being a petite blonde pirate because I’ve had to tape my left eye shut. Never a dull moment around here.

[Isaiah_40_31]

I’m glad you & your husband both have a good sense of humor, @Jstilley. That will help with healing for sure! Great that you’re doing better already!

[Jules]

I think I’d rather be a petite pirate over s creepy doll

[Jstilley]

Evolution!