For anyone who has been through Eagle’s surgery (or other similar surgeries), I was wondering if you’d be willing to share your experience with cranial nerve regeneration. Thanks in advance.
When I had my first ES surgery, my glossopharyngeal nerve was found to be wrapped around my styloid. I later learned this isn’t all that uncommon. The nerve had to be unwrapped for my styloid to be shortened, but the unwrapping process irritated my GN which caused half my tongue to be paralyzed. I also ended up w/ pretty severe First Bite Syndrome on that side (didn’t appear until 5 days post op). FBS is caused by the parotid gland becoming over-stimulated when the first bite of food or sometimes first sip of a drink are put in the mouth. Intense nerve pain which can radiate into the face, ear & up into the scalp is the result. The pain lasts a few seconds then disappears & doesn’t recur during subsequents bites or sips. In my experience, it was usually the first 2-3 bites of food that stimulated the pain, but once it subsided it went for good till the next time I ate. I very recently learned that a branch of the GN is what innervates the parotid gland so I had an AHA! moment realizing that my FBS was probably also related to the GN irritation during surgery.
Scrolling forward, the tongue paralysis had noticeably improved by 6 mos. post op i.e. I could eat more normally, but my speech was still somewhat impacted. By 9 mos. post op my speech had normalized & so had my ability to eat. I still have a little trouble w/ certain words, & if my head is in particular positions, it feels harder to articulate clearly, but overall, I’m 99% better than immediately post op. Over the same time period, the FBS grew less intense, but it has never fully gone away. That said, it has been nearly 8 years since my first surgery, & FBS has become almost non-existent most days. I am thrilled to see that my GN is still healing even after so many years. It truly took a year after each surgery for my symptoms to resolve to whatever extent they were going to.
May my story provide hope for all of you who are dealing w/ post op nerve healing & the frustration of how slow it can be. It is a process as @1speechpick noted w/ her list of nerve healing steps. Each damaged/irritated nerve will likely progress through those steps at a different rate so the process can feel endless & discouraging. One day, though, you will notice a symptom that was present is no longer there & then another symptoms disappears & so on. I think all of us are left w/ something residual from ES or the surgery, but for me that thing serves as a reminder as to how far I’ve come in my recovery.
@Isaiah_40_31, That was beautifully written. And thank you for responding!! It’s greatly appreciated!! It sounds like you had quite a journey of recovery. It’s so very hard when swallowing is compromised in any fashion. Having said that, you’ve made an amazing recovery and I’m so happy for you!!
When I’m having difficult days, I will look at these stories and remember that, in time, healing is coming. You’re right…having 4 nerves decompressed, each nerve will have its own healing time. It’s interesting to hear that your nerve was still healing years later. That’s amazing!
I had a really rough day, today. I’m seeing a functional neurologist for “vagus nerve rehab”. I started exercises yesterday and really paid for it today (at least that’s what I think it was). My nervous system feels like it still wants the “rest/recup” mode, and I had so much pain today after doing the exercises. So, your story came at a really great time! I read it and it really helped me refocus on a difficult day. Thank you for that!!!
When you talk nerve regeneration, are these nerves damaged during surgery or were they already damaged prior to surgery?
Both - @Bc2. My glossopharyngeal nerve was irritated by my styloid before surgery, but it was irritated further by surgery. It has nearly fully recovered. I had several other cranial nerves affected by ES all of which have healed for the most part, but some took a number of months to recover after surgery.
I’m so sorry you had a hard day @1speechpick. It may be a little early to start on PT, but if your doctor thinks this is the right time then you should go with that advice. Do listen to your body though as pain isn’t a good response to PT. Try spreading the exercises out over a few days rather than trying to do them all on one day.
@Isaiah_40_31, did it take any of your nerves the full 18 months to recover?
Does sound like it was a little too much for you, I hope the extra pain settles soon
As I mentioned, it’s been almost 8 years since my surgery, & my glossopharyngeal nerve is continuing to show improvement.
As far as ES symptoms go, I think most were gone by 12 mos post op.
@Isaiah_40_31 so what’s exactly still happening with the glossopharyngeal one?.. Could it be some secondary compression on that nerve too?..
I still have trouble w/ my tongue periodically i.e. swallowing, moving food around in my mouth, & feeling like I’m having difficulty pronouncing some words clearly. I also still have First Bite Syndrome, but it’s very intermittent now, & the pain is less severe than when it first onset 7.5 yrs ago. These symptoms don’t impact my life in any significant way. I also still have pain in the right side of my face in the area around my jaw joint, but it only hurts when I press on it so I simply don’t do that very often.