I’m now 15 days post op after right styloidectomy. Doing well overall with no major complications.
Just hit a rough patch last weekend with sore throat on right side and soreness of the jaw. Ive been icing the area 2 or 3 times a day and eating soft food. I had been on tylenol and ibuprofen but switched to a medrol dose pack 5 days ago.
Many of you said its up and down for a few months with recovery. Perhaps I overdid it around Thanksgiving, more chewing and talking etc. Or is it normal for pain to flare up? Any suggestions on what helped you with recovery?
The incision area is quite hard and the muscle around it is tight so i know its important to stretch and move it too and im struggling to find the right balance.
Since the surgery ive also noticed on my garmin watch that my resting heart rate has climbed from average 67 to now 74 and im getting periodic palpitations… any thoughts on this? Vagus nerve irritation? Perhaps the left long styloid still in place is causing issues that were previously masked…
Also, did anyone have endocrine/hormone abnormalities with Eagle syndrome that improved after surgery?
I had a lot of weight gain over the last 18 months (about 25 lbs) im sure largely due to not being able to exercise. But when theyd check my thyroid, the free T4 was quite low (down to 0.7) sometimes while the TSH just wouldnt budge (stayed 1-2). My dad has hypothyroidism so ive been monitoring this for years. Now im wondering if there was some issue with normal bio feedback due to jugular stenosis that may affect communication between neck and pituitary? Just a thought-- im getting labs checked again soon so it will be interesting to see.
Hi @mbista, nice to hear that you had your surgery. I also had mine 9 days ago and from about day 3 started to get some strange symptoms which I wasn’t sure were related to one another. The most noticeable was an increased in heart rate. It’s been sitting between 95 to 120bpm at rest though it was fast before surgery so I thought this could just be an unresolved symptom. My throat has also been sore off and on since surgery which I put down to the breathing tube and I’ve also had some feelings of inability to tolerate change in temperature - feeling hot and then cold - again similar to things I have before surgery. In the last two days I’ve developed an intensely sore throat and pain when swallowing (like a strep throat feeling), also just feeling a bit cruddy and a bit of green mucus when I sneeze.
I decided to go to the doctor this morning and turns out I have a chest infection, pre-pneumonia is what they think right now, but will have a follow up tomorrow to see if the antibiotics are kicking in. The doctor checked my temp and while it seemed ok at home, it was actually below where it should be.
Could be worth checking yours with a doctor if you have any other infection type symptoms - even low grade. I understand after anaesthesia the lungs don’t allow for coughing so much (not sure the medical explanation) so I think an infection can develop rather quickly without noticing it’s intensity.
Oh also, I had a strange episode of Thyroiditis about 4 years ago (I had undiagnosed es symptoms for the past 10 years). I still have no idea what caused it but I’m thinking it had something to do with es. A internal medicine specialist told me recently that you can be more susceptible to Thyroiditis during post-Partum (I was two years post-partum so not sure if that counts) but I feel like it was a inflammatory response as it was very abrupt. The symptoms were extreme. Hyperthyroidism to start where my body released all of the stored hormones in about 3 - 4weeks and then hypothyroidism for another 4-6 months.
@mbista - The symptoms flare you’re describing is the sort of thing that can happen off & on for several months. Sometimes you’ll know what you did that set it off & others it’s a mystery. It is possible this time around that your extra socializing & chewing at Thanksgiving did set this round off, but it could also just be a random event. Taking the medrol dose pack should help calm the symptoms over the course of a few days to a week. I think the biggest but most difficult thing to do to help recovery is slow down & take it much easier than normal for a month or two post op even when you feel good. Not getting too tired, staying well hydrated & eating a clean diet all help reduce inflammation. Not pushing yourself physically is a huge help, too, as is resting when you feel tired & stopping doing something if you begin to feel pain rather than pushing through.
Definitely could be from vagus irritation either due to post op inflammation, or, as you suggested, irritation to the vagus by your remaining elongated styloid. It’s not uncommon for symptoms caused by the remaining styloid to become more pronounced once one styloid is shortened.
My submandibular gland got quite swollen & hard after my recent IJV decompression surgery. The incision was in the same place as when I had my initial styloidectomy 9+ years ago & I didn’t have that physical response the first time around. It’s interesting that the gland was hard as a rock for a few days, but not painful then one day it just “deflated” the hardness was gone & it was back to normal size. That’s to say that the healing process w/ ES can have good surprises, too.
We’ve had several members who’ve had parathyroid problems & a number of our female members have commented that their symptoms get worse during premenstrually & during menses, but I don’t recall whether anyone had changes in thyroid hormones due to ES. A number of our members including me have thryoid cysts or nodules & those can cause issues w/ TSH & other thyroid hormones. Has anyone commented on whether you have something like that? It’s good you’re keeping on top of your blood work to check up on your TSH & free T4. I hope you don’t inherit hypothyroidism from your dad!
This is an interesting thought & I expect time will tell if this is a possible scenario.
Thank you so much for sharing! I hope you’re feeling better and getting over the recovery “humps”. You’re absolutely right… my heart rate has actually been in the 90s most of the time and I’ve noticed my oxygen drops to 90% when i go up the stairs. There’s no chest pain, fever or sweats but I’ll definitely go ahead and schedule a visit to get chest XR as everyone is high risk for infection after surgery especially folks like me who have autoimmune disease (been on Humira for 2 years for AS).
Thank you so much again for your support and words of advice. I do have many tiny colloid cysts and 1 bigger one on right side 1 cm. ENT and endocrinologist were both aware of these findings and did not recommend any biopsy etc for now, just watching it. But i can tell my thyroid function is definitely struggling, up and down/ dysregulated.
I def think theres a strong connection between Eagles and autoimmune + endocrine issues. I have ankylosing spondylitis as well as hyperparathyroid (it was mild, PTH in 60s and highest Ca 10.2 but given all the symptoms and high urine ca i had surgery to remove 3 out of 4 glands a year ago and i did feel better but of course the head/neck symptoms persisted and a year later i finally got Eagles diagnosis).
I found 1 article showing elongated styloids were more common in those with AS than general population.
@mbista I second what the others have said about recovery…although 74 is still within normal parameters. There have been a few members who seem to have irritated vagus nerve symptoms after surgery, it might be that yours was close to the styloid & got moved out the way which has upset it? Like you say, it is a balance between keeping everything moving and not overdoing things, hopefully you’ll work it out @BraveKat I hope that your chest infection goes soon and you can get back to healing from surgery
I’m sorry you’re struggling with other difficult body challenges, @mbista. It is tough to know which symptoms are related & which are independent of the others. I suspect ES wreaks havoc in our bodies in many ways we don’t understand or recognize. It’s interesting about those w/ AS having a higher incidence of elongated styloids, but both syndromes are calcium related so that makes sense.
@BraveKat - I also wish you a quick recovery. I hope the antibiotics get to work & knock out that infection PDQ (pretty darn quick - that’s something my mom used to say ).
Well last week i went to urgent care and had a thorough work up. No infection or clots but my TSH was down to 0.5 so diag likely subacute thyroiditis. I finished the steroids and started aspirin and a beta blocker for symptom relief. Stopped the B blocker after 3 or 4 days as i didnt want to end up needing it longer term. Im doing better the last 2 days. My HR still jumps up quite high with changing position but resting HR down to 68-70 again!
I talked to the surgeon and we are going to try and set a date for other styloid in April (about 4 months after the first).
That is good spacing between styloidectomies. It gives the first surgery time to get a solid foot hold on healing before you’re asking your body to heal again.
I’m glad you’ve gotten your heart rate down to a more normal level & hope it stays that way.
Oh no, sorry to hear you have to go through that. As I said, I also had it about 4 years ago…just as COVID lockdowns started. Doctors thought I was just anxious and it took me days and a scare with an enlarged thyroid before I finally got to see someone. By that time my heart was out of control. So glad you’ve managed to get it diagnosed before you completely depleted your stores. Still I know how you feel - be gentle and it will pass in a few weeks. I personally didn’t find the hypothyroidism as bad as the hyperthyroidism stage. I hope it is easy on you and you can find some relief soon. Take care
). 