I am glad to find this forum. I have some questions- but it’s a big intro so I will put headings if you only want to read parts of it! Thanks in advance for any input on your experience.
Eagles Findings & Plan
I have bilateral elongated and calcified styloids, estimated at 6.5 cm on each side. When I had my CT scan converted to 3D I was like holy shit I am either the biggest Eagles Fan (Philly team), the best dietitian (they look like carrots to me), or truly an elephant (fat tusks and I love elephants). I am trying to make this situation light but it’s heavy on my mind.
The plan is to get an external left styloidectomy first (5/3) and the right side done a few months later. My surgeon, Dr. C. in Philly, does one side at a time. When I saw him in person and he palpated them, it was freaky and flared symptoms for days. I could feel how big they are and it hurt. I saw him a few months ago but had to wait for my new health insurance etc to plan the surgery.
Background
I had my tonsils & adenoids out at age 5. I had a dental cone beam for a different reason which mentioned eagles syndrome and bilateral calcified styloids on the report but didn’t make a big deal about it and also a narrow airway on the report. I read up and sought an eval and it really made sense. I have seen two ENTs before my surgeon and although at least one saw on imaging (I asked once I learned) - sinus CT - they never mentioned it as oh this never causes any issues. I have several other medical conditions and treating those didn’t improve these issues I still have which is why I was interested in what this all is. I have literally seen over 60 specialists in the last decade or longer. I am the healthcare field and have had lots of gaslighting about my issues like I am sure some of you have experienced.
I have a host of medical issues (several autoimmune issues) and symptoms of which many did not improve by standard treatments or integrative approaches. I have had so many medical tests which show no route cause to the issues (upper lower GI, regular MRIs etc). I live a clean lifestyle - no drugs, alcohol, tobacco, soda, etc. Eat mostly at home where we cook whole foods etc. I feel that the Eagle Syndrome is contributing to some of these symptoms… but curious what others experience- I feel like my vagus nerve is being affected.
Symptoms
Are any of these symptoms ones you had and did they resolve with surgery over time, my symptoms are bilateral?
Clogged and full ears with swishing, diagnosed as Eustachian tube dysfunction and flonase suggested but it doesn’t help
feeling strangled often
throat inflammation
narrow airway
dysphagia at times choking on food/liquids
neck pain
dizziness with certain neck movements or strain
weakness and balance issues
shoulder pain after certain neck movements
random eye twitching
growth hormone deficiency
gastroparesis
high blood pressure
slow eater
can’t chew gum will cause all kinds of flare in these issues
weight gain
neuropathy at times in arms and fingers
hormone issues like insulin resistance
high blood pressure that I didn’t have until all this got worse
varicose veins
difficulty with sleep and positions
Surgery Questions
What things did you buy ahead of time besides soft food to help your recovery?
Did you need prescription pain medications?
Did you need steroids after your surgery to help decrease inflammation?
How long before you drove after surgery? I have a child I drive everywhere.
If you had improvement in your blood pressure or other issues, how long before you noticed a difference and had to adjust your medications?
If you had sleep apnea did it improve after you healed from surgery?
If you had your styloids out at two different surgeries did you notice any benefits after the first side was out?
Did you notice any benefit in any of the symptoms I listed?
I have read a bunch of past posts- thanks to all who contribute- but I wanted to provide my story to see if others had anything to offer!
I saw my neurologist yesterday and told him I was having surgery and he was kinda a jerk saying- hopefully you aren’t having a surgery for nothing… UGG. I am going with my gut and I feel it will help with some of my symptoms but looking for some experiences and reassurance.
Hi Lori,
I just read your post & am just beginning the process of talking with surgeons about the removal of the styloids. I also have bilateral elongated styloids with internal jugular compression on both sides. I have also had numerous “weird” symptoms that we have been trying to figure out for a while. Anyway, I can relate to much of what you have gone through & just wanted to let you know that someone else out there gets it ( I know that there are many “someones” on this forum). I have a consultation with Dr. Constantino in NY next week which will be my first consult with a surgeon since learning the extent of my issues. I did also meet with Dr. Hackman in NC to get the original diagnosis but have had further imaging since I saw him a couple of months ago.
I’m sorry I don’t have any answers for you as I have not yet gone through what many people on this forum have. I do know that when I began to really control my diet & inflammation some of my symptoms improved. I just wanted to let you know that I’ll be thinking of you as you go through all of this.
Hopefully most of your symptoms will improve after surgery, you certainly have mighty long styloids! Having one side done & then the other later is something that most doctors do, be prepared that your second side symptoms will still be there and might ramp up a bit, that does seem to be quite common, unfortunately…and sometimes members have bizarrely had cross-over symptoms!
I had the fullness feeling in my ears, dizziness and balance issues, painful to chew, difficulty sleeping; these all improved with surgery. I had alot of facial nerve pain which has improved but hasn’t gone completely. I didn’t have the more common feeling of being strangled/ difficulty swallowing etc, but these do usually improve.
Some of your other symptoms could be vagus nerve related, so hopefully if the styloids are irritating the vagus nerve this will get better too!
You can search for ‘success stories’, it’ll come up with lots for you to encourage you! You could also search for what to expect after surgery, which should be helpful too. There’s info in the Newbies Guide Section about surgery as well, here’s a link: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And a surgery shopping list one of our members suggested: Surgery shopping list - General - Living with Eagle
Recovery does vary, so bear that in mind, as does pain after surgery. I was fine with paracetamol after the first couple of days, but it’s more common to need stronger painkillers, so make sure you ask for that. (& get some laxatives too, as you don’t want to be constipated which these meds can cause!). Steroids can help with swelling- regular icing the area & sleeping propped up will help with swelling. Not all doctors do prescribe them though, I can’t remember if Dr Cognetti does. It’s worth getting a wedge pillow to help with sleeping propped up, & obvs ice packs.
I couldn’t drive comfortably for about 3 weeks after my first surgery, it was too uncomfortable & my neck was stiff to turn my head. It was easier after my second surgery though!
Let us know when you have a date for surgery!
Thanks for taking the time to reply. It is comforting to know others relate. I hope your consultation goes well! I watch my diet as that is my profession and I take good quality fish oil but still have inflammatory issues. Thank you so much and I am sending positive vibes to you! Keep me posted on your appointment!
Jules,
Thanks for all of the information, links, and tips!
I am really thankful for this and the time you took to reply.
I am glad to hear you had many improvements with surgery. I need to get a hands free ice pack to use on my neck after! My surgery date is May 3rd for the left side first! No date yet for the right side. Attached is a 3D pic of the left side. Right is similar. Not sure if you can see this upload!
WOW! Your styloids are very thick & long @Glekeygirl15 !! Your left one looks like it’s touching your jaw bone (mandible). I anticipate you’ll notice some good symptoms resolution after your surgery.
I’m putting your surgery date on my calendar so I can pray for you that day. Please let us know how it goes for you once you feel well enough to post.
