I see folks who’ve had some really awful symptoms and who’ve lived with this for years. To you, you’re all so brave and I’m so terribly sorry for your journey and pain. It would appear to me that this is highly under and misdiagnosed and probably more common yet less understood than we can imagine.
As I navigate the gray zone between dealing with my own pain and an official diagnosis (the hurry up to wait game) I think of many questions to prepare myself.
One question that surfaces: I understand the pain often shifts in bilateral cases after one side has been removed but wondering if there’s a pattern or notable difference with folks who’ve successfully only needed one side done in bilateral cases?
Ie, those who’s symptoms are fewer and non vascular (but no less painful) perhaps? Are there folks here who have been doing well having had just one side done?
Do most surgeons just plan to remove both regardless?
If symptoms do show after removal of the first, is there a common notable timeframe? Weeks? Months
It could be that after one side is done, as the worst side is usually removed first, you realise that the other side is quite painful but has been masked. Also there could be a small shift in tissues in the neck (The styloid, stylo-hyoid ligament, hyoid bone are all one long chain), so possibly releasing that tension at any point could alter the position of the structures & cause pain…
I think lots of us do end up having both sides done, but not all. I don’t think many surgeons will remove styloids if they’re not causing problems, as there is a risk with the surgery.
Personally, I think it would’ve been a gradual increase in pain I noticed over a month or two, but it was more to get rid of the remaining vascular symptoms which made me decide to have surgery, as the pain was bearable.
Hopefully others will chip in with their experiences if they only had one side removed.
To add to Jules comments, many doctors will only remove one styloid at a time for the very reason you mentioned - the remaining styloid could be symptom-free & never develop a problem & may not need removal. In most cases of bilateral ES, however, the remaining styloid does end up causing problems either immediately or eventually for the reasons Jules mentioned.
My pain shifted from one side to the other prior to surgery or diagnosis. I do know that my TMJ did complicate my pain. I do think the pain flairs did cause me to alter my posture or neck position to avoid the pain on one side, then caused problems on the other side to flair.
As to whether to do both surgeries, I would evaluate based on length and thickness of styloid. It took a few months after 1st surgery for the other side to remind me it was still in there. That was the side that originated the pain first 5 years previously. Although it calmed down, it helped me to decide to do the other side…as it was the longer of the two.
My entire neck and muscles were so tight from all the pain and dysfunction for 5 years. You do have the potential once you release one side, the other side of neck muscles tighten up more? This is why I start getting regular massage a few weeks after surgery.
You can take a wait and see attitude.