Hi Carina,
Sorry you’re going through this. My situation was very similar to yours and it sounds like your plan is similar to mine. But I am one step ahead so I thought I’d share my experience so far.
Like you, my symptoms made it difficult to function, and while the list was long, my worse symptoms were the head pressure, headaches, and brain fog. I had bilateral occlusion on both sides. I had my first styloidectomy with resection of C-1 process, posterior belly of digastric muscle, and a lymph node. I am currently about 10 weeks post surgery.
It did not solve the problem and I will likely need the second side done as well - However, since the surgery, it’s the best I’ve felt in 10 years. As others have said, I still have some down days, but my bad days are not as bad, and I have days that are close to normal.
The only thing that is worse for me is that there was some nerve damage so i have the “first bite syndrome" that is slowly getting better with time. The only other thing that is bothersome is that I swear the side that has yet to be removed is worse than before. This could also be that I notice it more now that I have one side that feels better.
But now I can bend over for a period of time without passing out or experiencing crushing pain. I can tie my own shoes again and wash my feet. I can lay down for longer than I used to even though this still builds some pressure. My range of motion in my neck is better - not fixed, but better. And I can tell that a lot my stiffness is one-sided, which I take relief from knowing that this could be helped in the future.
While I can’t speak to your specific situation, I too was afraid the surgery wouldn’t help or would make something. So far, it didn’t fix me, but I do have aspects of my life back again these last few weeks. I would do it again in a heartbeat. Even if the second surgery didn’t “work” like the first, I will be forever grateful that I did the surgery.
The surgery is both easier and harder than I thought to recover from. Because I felt pretty good pretty quickly after, I definitely over did it on a few occasions and felt like I got set back. You almost feel better than your body is (yet) able to handle - which I take as a good sign, because I didn’t want to do anything prior. After surgery, I wanted to do things again (even if still limited). I attribute this to the brain fog lifting. My friends and family say they notice my word choice, pace of speech, and cognitive function all returning to my old self from years prior. But as others have said, do keep in mind that the surgery does seem to take a while to truly heal. I still notice a lot of healing going on and I was fatigued for a good month afterwards. But that is all slowly improving.
While this was just my experience, I hope it gives you some understanding and maybe some hope that improvement can be obtained. I am much better after just one surgery and hope to be that much closer after two. I dearly hope you get the same relief some day soon. Good luck.
