Hi all, I just wanted to post an update on my surgery recovery journey. I am now 3 weeks post-op intraoral styloidectomy and tonsillectomy. The first two weeks were immense ear & throat pain, fatigue, along with some nausea and vomiting. It has been a bit of a ride but I am recovering nicely, having some bad days along with the mostly good days.
I still have left side ear pain much less than I had with ES, still some pain and soreness in my throat and daily headaches. I still have the white scabs that are annoying as I can feel them like a chunk of food stuck in the left side of my throat that won’t go away.
I struggled immensely with fatigue after surgery and slept a good part of two+ weeks post-op; I have been feeling quite a bit better the last few days which leads me to believe I am healing up.
I am still having a little trouble with food and find I have to stay away from anything acidic as it really irritates my throat, but otherwise progressing nicely with little bites of food. Many of you have noted first bite syndrome after surgery, I didn’t know what it was so I looked it up; I have had that for years and always thought I simply had overactive taste buds, mine is way more intense now and hopefully, it will eventually subside.
All in all, I am now feeling pretty darn great after 5 years of suffering! Most of my symptoms have resolved, although I do feel the right side needs to come out as I am still having mild dizziness and vertigo (nothing like before surgery), as well as a very mild right earache.
I am so thankful to have found this forum and everyone here who have listened, offered advice and support for ES sufferers and encouraged us all to never give up and to advocate for ourselves…you gave me hope again and I now have my life back so THANK YOU!!!
Oh Weezie, I am so glad that you’re so positive about your recovery! Great that you’ve noticed improvements in your ES symptoms, even though it’s been a rough road… answered…hope that you continue to heal & improve!
What a great report! You will continue to heal & your first bite syndrome will decrease w/ time. I got FBS after my first ES surgery. It was very intense. I’m 5.5 yrs post op & have recently noticed I almost never feel it anymore. There’s a testimony of how long it can take nerves to heal!! The recovery process will feel like 3 steps forward & 2 steps back some days, but the net result is forward progress.
I’m so glad you’re feeling so much better already.
Glad to hear you’re healing well @Weezie65! I had the exact same procedure done by the same surgeon 4 days earlier and my experience mirrors your own very closely. The last couple of days I was feeling really good, the pain was quite low (maybe a 3 out of 10) and I wasn’t taking any pain killers or very little. Then this morning I wake up and it hurts more again (maybe 5 or 6 out of 10) and I’m cycling Tylenol/Advil again. It truly is a 3 steps forward, 2 steps back recovery, so weird!
My only symptom prior to surgery was pain, I didn’t have anything else so my only barometer of success in throat/ear pain. I too still have white scabs and I believe I can see dark lines underneath, I’m assuming sutures… I was surprised they can take many many weeks or months even to dissolve. I agree certain foods trigger it - acidic for sure and spicy too for me. I do not have any headaches or first bite syndrome - so that’s good! I do have a dent in the side of my tongue from where it was clamped during surgery and it has been numb until last night when it started getting very painful to the touch - as if it has been burned by hot food but it hasn’t. My guess it that it is like when your hand or foot falls asleep and when you shake it to wake it up it’s really painful… I think it’s probably the nerves coming back online so to speak.
My energy level is definitely back this week, working outside in the yard and garage, feeling quite good in that sense. Hopefully continue to heal in a stepping pattern towards the positive.
Great report, BFresh! Thank you for the update. You got off to a rough start post op, but it sounds like those “bumps in the road” are past. Onward & upward toward feeling really good!
Your observations about nerve recovery & the beginnings of their re-sensitizing are good. It can be a very painful process (just like a sleeping foot waking up - GREAT analogy!). Funny, I had the opposite sensation in my face that you have in your tongue. My face along my jawline was numb & when the nerves woke up, my face kept feeling cold in that area. Curious…
Hooray for an increased energy level! That alone makes a big difference. Keep that positive mindset. It will serve you well.
Hi @BFresh, so glad to hear things are improving for you. It’s a day by day recovery process, all I know is things have improved substantially for me since surgery, yes it was very rough at first but so, so, so worth it! I hope you continue to improve and can get back to enjoying your life again. All the best!
Glad that you’re feeling more energy & noticing some improvements, albeit slowly…just be very careful on the good days that you don’t overdo it & set back your healing, I speak from experience!!
Thinking of you…
I’m now 4.5 weeks post-op and seem to have hit a bit of a wall as far as recovery. My ear pain is minimal but my throat pain has increased quite a bit over the last few days, and I still have white scabs in my throat is that normal? My jaw stiffness and pain has increased again also, I’m wondering if the damp gloomy weather may have something to do with my steps back?
My fatigue was getting much better, but again the last few days have been a struggle, I think most of my day today will be horizontal lol. I don’t have my post-op follow-up until 8 weeks, really hoping I will be mostly recovered by then. Hey @BFresh, how are you doing?
Hi @Weezie65 I totally understand what you’re saying, I’m sorry that you’re feeling this way but take comfort in knowing I’m right there beside you. I’ve honestly been researching Glossopharyngeal Neuralgia and treatments for it because I feel like this throat pain just will not go away. It will be a bit better for a day or two and then it gets worse again. It’s been 5 weeks today since surgery for me and honestly the pain is about the same as it was pre-surgery. Frustrating to be sure! I too still have a white scab at the back of my throat so I’m not sure what “normal” is after this surgery but at least we’re following a similar path!
I have my follow up with our surgeon on June 30 and will be sure to post the details of my appointment that day so you don’t have to wait quite so long. So you’re not alone, we are on this ride together!
Thanks @BFresh, I’d appreciate your update after your appointment! Yes, indeed, we are on this ride together. I found the mouth rinse really helped with the throat pain, sadly I have none left, maybe I should phone in for a new script. Hope you are well otherwise. I look forward to your update! Take care.
Thinking of you both- intraoral does seem to be a bit of a trickier recovery for some. Not sure how long to expect for the scabs to heal, but if you Google tonsillectomy for adults there might be some more specific info about that?
Please be reassured that recovery is not straight forward, & to have worse dsys/ setbacks is quite normal. It is still early days really for both of you, it can be a couple of months before you feel more normal, & nerves can take even a year to heal!
BFresh- sorry, I can’t remember if you’d tried medication before surgery? It might be worth trying one of the nerve pain medications like Gabapentin or Amitriptyline for now?
I’m taking Lyrica (pregabalin) and have been for probably 18 months. My neurologist wants me to start taking Tegretol, he says it works better but I’m waiting for my surgeon appointment to discuss things with him before I make any changes.
BFresh,
Yeah, the nerve healing can be a bit poky after ES surgery. For me it went away so gradually that I would notice it daily until one day I’d have an “aha moment” when I realized the pain was gone. It did take 9-12 months for some of my nerve issues to resolve. I had excruciating first bite syndrome (started on day 5 after my first surgery) which is almost completely gone now that I’m 5.5 years past surgery. It’s amazing to me that the nerves have continued to heal over that length of time.
Hi @BFresh, how are you doing? We’re 5+ weeks post-op now and I feel like things are progressing along ok for me, how about you?
I still have pain, but much less (ear and throat), still have the white scabs in the throat which are very annoying. Still having to watch what I eat, no spice or acidy foods and small bites only; I still struggle with fatigue, but not as bad as 3 weeks ago.
I still seem to have some symptoms, dizziness and vertigo positional (right side) mild ear ache right side, constant headache (i take Aleve daily) which leads me to believe I need to get the right side out also. I have a phone post op following-up on Tuesday, June 30th with Dr. O’Connell so I’ll post again after I speak with him. Take care, cheers.
I was doing ok and then yesterday my scab came off and it hurts like crazy again! I can’t believe this far out and I still have scabbing, it’s wild. The skin is red and there’s a spot I can’t quite see that is black - not sure if that’s an old clot or a stitch or what. I’ll be happy to see the Dr next week and have a professional evaluation of what I’ve gone through, where I’m at, etc. I never imagined the recovery process would be so lengthy and difficult.
answered…hope that you continue to heal & improve! 
Hey 
Hope you are well otherwise. I look forward to your update! Take care.