Needing support, please

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I am now 25 days post op and feeling beside myself with recovery. Anxiety-ridden and uncertain over a lot of things.

I failed myself at my 2 week post op appt never once asking about all the questions I had because I truly felt good, that I was on a solid recovery path and that my questions were now somehow irrelevant. Almost immediately I regretted not asking all my questions as things regressed but figured I’d just push through and give things time to settle and all would be ok. Last week I did email and requested another option for nerve meds as the Gaba isn’t doing anything - honestly, I’m skeptical that anything else will either as Ive been down the whole list of medications path.

My incision is great, I don’t see that there’s any external surgical inflammation left. I don’t feel the lateral neck aching like I did and the ear fullness isn’t what it was.

The worst symptom - tongue/throat burning is still present as it was pre-op and shows up the minute I wake up- I’m pessimistic that this would still be a non-stop pain. I still have left sided throat burning/pressure/soreness (sorry, not sure how to describe this). I had a couple odd days where this was significantly reduced but I haven’t felt that way for well over a week. Much like pre-op, if I apply a little pressure to the incision area/where the styloid was, I can get slight relief

I read that the ear fullness and tongue/throat burning are both related to the GP nerve. My anxiety is just off the charts and I’m making myself crazy wondering if again, I had a surgery that wasn’t needed. I’m trying to find others who’s burning pre/post op ultimately went away but I’m turning up very little aside from a few who had notable improvements immediately. In fact there’s not a lot of folks with this symptom to begin with.

Because of this, I’m finding myself diving into other diagnoses that this could’ve been otherwise (ie GPN) and now wonder if “that one time I hit my head hard” if I did something bad. My CT has been looked at multiple times but was something overlooked? What do I do and who do I turn to? Can you see my craziness coming to surface? I’m losing focus/control with the constant oral pain, feeling helpless, and can’t shake all the “what ifs”.

I understand the whole bilateral/crossover/may need both sides removed potential. I haven’t convinced myself that the right side is necessary at this time as there have been zero troubles with that side and all that I have and still feel are prominent on the left. It’s hard to want to pursue that as an option when I’m thus far completely asymptomatic on the right.

How do I get through this? How do I get back on track? I truly feel lost and hate like mad to be sharing this. Im relying heavily on prayer and asking God for hope, strength and his healing hand. I sure could use some support from those who just “get it”. :cry:

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I am so sorry for the set back @Tjmhawk01!! I understand your discouragement. To encourage you, I can relate a bit of my own recovery which also involved my tongue (which I have mentioned before but perhaps not to you specifically).

I had the sensation of extreme pressure on the back of my tongue as one of my ES symptoms, no pain, but the pressure was really uncomfy. This symptom did subside after my second ES surgery. After I awoke from my first surgery, I was told that the right half my tongue was paralyzed because my glossopharyngeal nerve was wrapped around my right styloid & had to be unwrapped. That process made my GN angry & thus the paralysis. I was assured it would recover eventually. I had sensation in my tongue, but the motor part of it was completely unresponsive, & when I stuck my tongue out of my mouth it curved sharply to the right rather than coming straight out. I talked like I was drunk & couldn’t eat normally. If food got over to the right side of my tongue when I was chewing, I had to manually move it to the left so I could finish chewing & swallow it properly. This went on for 6 months, HOWEVER, over the course of those 6 months, there were baby steps in improvement of tongue function. It wasn’t until about 9 mos post op that I could finally speak normally again & eating/swallowing correctly was no longer a problem.

We don’t know how long our nerves are rubbed by elongated styloids before there are symptoms (like pain, burning, pressure, tinnitus, etc), so it may be that the affected nerves have had years of irritation before the irritant is removed. It’s my opinion that the longer the nerves are bothered, the worse their condition becomes & the longer their recovery will take.

I know I may sound like a broken record, but you aren’t a month out from surgery yet. You potentially have months of healing ahead. The fact that you’ve had some better days where your symptoms were less bodes well to even better days ahead. I still believe you will experience recovery, & I hope/pray for your full recovery from your burning tongue/throat symptoms.

I also understand your anxiety. Your brain is in flight or fight mode because of the constant burning & fear that this is a forever problem. Anxiety is the result but only serves to cause you to tense up which tightens muscles which in turn irritate nerves potentially making those symptoms worse.

I think that you still have post op inflammation inside where you can’t see it. I think it takes a couple of months for that to fully resolve which is why so many people notice more significant post op improvement around that time. (My opinion not medically proven).

Regarding the nerve pain meds, could the Gabapentin or Nor/Amitriptyline dosage be increased gradually? We did have a member who started on Gabapentin, & it didn’t help. It took 3 months of working on dosage w/ her doctor before she finally found the dose that helped her. She posted her story here to help others know that even nerve pain meds can take time to make a difference, & they do need to be tweaked.

Again, I’m so sorry for your frustration & anxiety & fear. Keep believing you will get better. That can only help. May you feel God’s presence & care in the midst of this really tough time.

:gift_heart: :hugs:

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@Isaiah_40_31 - you are always the voice of reason, and such a blessing. I’ll do my very best to heed by your advice and experience. I suppose I’m having these flashbacks from the last surgery that didn’t resolve my symptoms and I’m feeling like I’m in that very same boat again. Furthermore, trying to heal while battling the constant pain just drags a person down further.

Thank you. Thank you for taking time to help reassure me. Thank you for having experiences and knowledge to offer. And thank you for being so gentle to folks (like myself) who end up on the edge wondering what next.

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@Tjmhawk01 Hi my friend! I don’t have anything to share with you as far as tips etc as you know as I haven’t yet had the surgery. However I just want to remind you you are never alone. I continue to pray and have faith that this is the worse of it for you and that much better days are a head of you. Just taking a bit more time than we had hoped . I will be honest patience is NOT a virtue I possess! Ha! I’ve gotten better but… it’s a definite work in progress! One day at a time, and if that gets to be too much sometimes than just one hour at a time. I truly believe that this all shall pass and better days are ahead my friend. Gentle hugs!!!

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Poor you, I just want to wrap you up in a big hug, it must be a worry when you’ve had other surgeries which hasn’t helped. @Isaiah_40_31 has given you some good advice & has a more relevant personal experience than I have, so can’t really add any more to that other than agree it’s early days still, keep your faith in this testing time, & know we’re rooting & praying for you. God bless :hugs: :bouquet: :bouquet: :pray:

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@Ddmarie and @Jules - I very much appreciate you both and the kind words of support. As if I couldn’t already be frustrated enough, I reached out to my surgeons office to see what other form of medication I could try. Here’s the response:

“Gabapentin is typically our “go-to” medication for any type of nerve irritation. However, these symptoms are not surgery related and you would need to speak with your PCP regarding managing these symptoms.”

So I guess he’s done his job and any pre-surgery symptoms are for me to figure out. Ok then.

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I’m so sorry! Some surgeons are better w/ long-term follow-up than others. In retrospect this could be a godsend as your PCP could offer a different Rx option that might be more helpful or perhaps a referral to a neurologist would be even better.

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I am so sorry ! Like @Isaiah_40_31 said this very well could be a blessing in disguise and your pcp can help you further. I am praying for you non stop my friend! Keep the faith. :heart:

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I just love you all. I realize now I may have sounded like a drama queen expecting more so soon. Sometimes things just catch up and send me into a tailspin. With all of you, I’ll get through this and will be able to look back and say, “you all were RIGHT!” :two_hearts:

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@Tjmhawk01 I really do sympathize with you but I think it is way too early to assess whether the surgery was success or not. I have not had surgery so I am no expert here as others are but based on my opinion/guess is that the type of Surgery that you had with Dr. Omlie might have something to do with the symptoms of GPN. The incision is bit higher up behind the ear as opposed to the middle of the neck incision as most of surgeons do. This higher up behind the ear incision can aggravate the GPN as it exists in that area. Also, if we assume that it has been compressed/irritated by the removed Styloid, the surgeon might have moved/stretched/repositioned the nerve during the surgery to get the Styloid out. So all these presumed activities and the prolonged irritation/compression of the nerve will definitely require at least 3 months or more to fully heal is my assumption.

So when your brain start to ruminate and starts to tell you that it won’t heal and it might have been caused by other issues, just tell it that you have at least 2 more months before you can conclude that the Surgery did not work for you and seek additional interventions. I know when you had high expectation of the surgery and you continue to experience the symptoms you had pre-op, it is just depressing in addition to the on-going pain so don’t try to shake it but try to accept it for now and hope for the best. I know it is easier said than done. I am pretty sure, this will be behind you in 3 to 4 months.

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I took 800 mg prescription Motrin for a month after my surgery and it really helped reduce the swelling. Maybe that’s why I didn’t have the burning pain in my throat, because the swelling was reduced by the Motrin. It’s worth a try. Also you might want to ask about Lyrica. My mom has trigeminal neuralgia in her face and gabapentin does not work as well as Lyrica for her. They now sell Lyrica in generic form so it’s not so expensive.

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@KoolDude Yes!!! All of this I completely agree with! Well stated per usual :relaxed: !!!
@Tjmhawk01 When I mentioned about pcp helping further I was speaking along the lines for pain management. And don’t you ever think your being a “drama queen” as you put it! It’s your body and you are allowed to have “days” and be concerned this is all new territory by all means! Best thing to do is try to remain calm and remember you are not alone! @beachlady I had surgery (not yet for eagles) but for something else a few months ago and I agree Motrin is a godsend for inflammation! Of course taking it with food in the tummy! :upside_down_face:
I just have to say once again how amazing ALL of you are. Thank you for being here and being so supportive!!

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I’m so sorry that you’re in pain. Reading your post about applying pressure helping a little, makes we think that trying a topical hemp cream (can buy on Amazon) around that area you apply pressure to would help a little. The hemp cream helps with inflammation and doesn’t have any CBD in it. I had nerve pain from the greater auricular nerve after my surgery and used the cream three times a day along with an ice pack periodically to keep the nerve pain down. It’s five months after my surgery, and I’m still using the hemp cream once a day, but the nerve pain is much less. Hope you find some relief soon.

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@KoolDude - I’ve often read your contributions here and have developed a great appreciation for you and what you share. Thank you for sharing your insights. Never having gone through nerve issues/damage, it’s rather hard to grasp the reality of the time it takes to heal. And of course being sent home with no restrictions, again, it’s easy to think this should be showing signs of improvement sooner. You and @Isaiah_40_31 mirrored each other’s comments regarding length of time a nerve is irritated/compressed vs length of time for it to recover. I’ll fall back on these words and keep this in mind going forward. Thank you so very much for sharing.

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@chrisc I’m going to do exactly this! I’m a bit uneasy taking large doses of Ibuprofen or Motrin for other reasons but I will absolutely look into this. If you have a moment of time to PM me, I’d be interested in knowing if you have any special brand you recommend. Thank you for chiming in.

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This just shows how different aftercare can be. My surgeon said there’s no proof that prednisone would provide any more relief than the 800mg of Ibu I was given. And even that per scrip was only given for 2 weeks (although I do still have a few that I may take despite). I have a call scheduled next week with my PCP and will ask about Lyrica. Thank you for this!

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@Ddmarie, it’s comforting to know there’s people out there that will swoop in to help. Unless one has gone through this, it’s hard for family/friends to relate. They just see you pushing through the day to day.
Sunday night my son and I watch an episode of a series that we’ve been waiting for. I stayed up until 10:00 that night. My son said to me, “Boy, you stayed up late mom”. It’s funny mostly, but also so sad because the last 2-3 yrs I’ve been in bed between 7:30-8:30 because the pain isn’t present when I sleep and missing out on so much “life”.
Thank you for always being quick to chime in, offer “gentle hugs” or just to check in. You are such a kind human!

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@Ddmarie Part of what is so great about this community is the empathy they show in difficult times and the guidance they provide in uncertain times and finally the resources they offer in desperate times. I benefited a lot here so I try to give back as much as I can.

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@Tjmhawk01 I equally admire how you give back to the community here while fresh from surgery so the least we can do is offer our empathy in this difficult time but surely will pass in time.

For the lack of a better analogy, think of this as swollen scar with abscess that was punctured to release the abscess. It will hurt for days badly but surely after few days the scar will heal and the body will regenerate. So instead of days, you have to be patient for few months and it will heal. It will hurt before it gets better.

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You’re definitely not a drama queen! It’s quite understandable to worry that your worst symptoms hasn’t gone yet…You’ve been a great support & encouragement to others on here while you had such a long wait for your surgery, so the least we can do is be here for you :hugs: :smiling_face_with_three_hearts:

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