Having 2nd surgery on my birthday! -_-

Hey guys, so my my second surgery was moved to be on August 10th, my birthday (I will be 22🎉)
I am a bit nervous because I have gotten much worse since removal of my right side. However, I am still hopeful that the removal of my left side will prove more successful since it’s possible I got worse cause left side needs to be removed. Over the past couple of months I have received an official EDS diagnosis as well as a possible Marfans syndrome diagnosis (connective tissue disorders). Also, I have heard talk that “maybe” removal of styloids can cause more instability in neck to be worse because possibly the styloids grew in the first place due to that instability, I am curious if anyone has more insight on that? My current plan is to go ahead with this surgery and then assess my next steps. I will share my journey through this second surgery. I trust Dr Hepworth, so I am happy to have him throughout this process.


Your situation is definitely interesting, & the suggestion of styloids elongating to help support an unstable head/neck makes a lot of sense. However, another point of view is that your styloids elongated for some other reason, & the worsening of your symptoms after surgery #1 has occurred because your neck is now out of balance w/ one styloid gone. Soft tissues have likely shifted around a bit which could be causing the muscles, etc, on the remaining side to tighten up which in turn increases symptoms.

After my first surgery, the pain from my remaining styloid got worse over time. I was pretty dysfunctional from my symptoms by the time I had my second surgery. The second surgery was my life saver. Almost all my symptoms disappeared over the course of 12 mos afterward.
Caveat - I do not have EDS or CCI so my situation is different than yours. I do have some arthritis in my cervical vertebra from my whiplash injury in 1979 which may make my neck issues almost opposite of yours.

I’m glad you plan to go ahead w/ the surgery & hope & pray your second surgery is tremendously helpful & not the opposite. That would be your best birthday present ever!! :pray: :sun_with_face: :hugs:

I had my second styloid removed on my 50th birthday (Aug 22 - Hi fellow leo) !!! Best gift ever :laughing:

That is the age old question of the chicken and the egg. This may be helpful - I know someone who saw Dr F Henderson (one of the top NS in the country for upper cervical instability with connective tissue disorders) last week and asked him if ES caused CCI/AAI or vise versa, he said " what does the styloid have to do with stability?"

Your CT disorders are significant and will likely lead you to further investigation for CCI/AAI but you are on the right path and are in the best hands for this step. Hang in there!


Rotten having surgery on your birthday, it’ll be one to remember! I hope that the surgery does go well for you & helps with the remaining symptoms- I can understand your concerns given your other diagnoses, but you’ll never know which symptoms are ES without getting rid of both sides I fear…you are in very good hands with Dr Hepworth, he sounds extremely thorough! @JustBreathe’s answer is interesting about the instability, maybe that’s something you could ask Dr Hepworth about too. Will be praying for your surgery, sending you a hug :hugs:

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So glad you finally got it scheduled and confirmed! As you know, I have EDS, possible Marfan’s and CCI. I was worried too about contributing to more CCI. The removal of both styloids/calcification made no difference. I did get some pain relief though for the compressions the calcification caused though which is a PLUS in my eyes. About 8 weeks after ES surgery 1, the other side did kick upon and remind me it was there. Thankfully it didn’t last more than a few days but it confirmed for me, I was doing surgery 2.
Our bodies compensate for pain and we get in very dysfunctional holding patterns (guarding) and postural issues which are worsened with CCI. We (EDS) are all over the place trying to hold our bodies and necks stable. I started getting massage about 2-3 weeks post op to help with shoulder tension, etc. They were cautious to stay away from surgery site but slowly started mild scar massage. Some regular PT for postural relearning post op might be helpful for a reset?