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Eagle Syndrome - Online Support Group

Set Back- 12 days after surgery

I had my left styloid removed on June 29th. All was going well with healing until 2 days ago when all of a sudden a developed new symptoms. My throat feels like sand paper and when I swallow it feels like knives are sticking in it. The pain comes and goes. I went to the ENT (local) to see if I have an infection and he assured me I do not. He said everything looked good. I made an appointment with my surgeon and seen him yesterday. He said he thinks the glossopharngeal nerve is aggravated. He prescribed Lyrica and referred me to a Neurologist. I am so depressed and anxious now. I know it has only been a few days but I worry that this is the life that I will have to live for the rest of my life. I pray every day that God will help take this pain away from all of us. I really need some encouragement today. Thank you all for your continued support. It means the world to me.

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Sorry Luv you are struggling. Did you get your operative report?
I do know in my case that the my surgeon did a decompression on my glossopharnegeal nerve. I do have TMJ and my doc warned the surgery would kick up the TMJ. I did have some mild first bite after surgery and pain in my jaw but everything initially was a breeze. Like many opening the mouth very much was a struggle as it seemed tight. Some of my symptoms didnt appear until a few weeks out. Im almost 12 weeks out from surgery. I have been struggling with jaw/ear pain that wont seem to resolve. So much so, I did go see my neurologist 2 weeks ago and got botox in my temples and steriods in my jaw to try and calm the area down. I have seen a slow improvement the past week for the first time on this nawing pain. I also went to my dentist to make sure I didnt have a tooth problem. I saw a pain specialist yesterday.
In my case, it appears to be the trigeminal nerve that is aggravated and my masseter muscle is locked up like a drum. I have been doing some intense deep tissue massage in there. I also discovered I have some serious gum disease and two molars in back lower left that are crowned that have decay under the crown. One may have to be pulled and has been aching. Since all this is is within 2" of the problem area, I dont know what is causing it all. Probably a combination.
Well I have several medical opinions now and first suggestion is to get botox in the the masseter muscle. Once I do that it will help relax all the other muscles attached where all these nerves reside and get aggravated. Pain specialist also suggested acupuncture 2 x week int he masseter muscle. As a side note, my PT person is starting to massage neck and incision site to prevent adhesions so I dont get into dysfunctional neck positions. I not sure if you have any muscle tension in jaw, neck and shoulders. I did pre-surgery as the pain was causing me to tense up. It has helped me to get body work weekly. A nerve block should give you temporary relief, then you can figure out the source and how to address it. Not all neurologists do these types of injections. I lucked out and was referred to mine.
I am waiting to schedule my other side because of this ongoing pain. I certainly dont want to get the other side done and have both sides hurting at once.

Hang in there…this too shall pass. You are taking the right steps to get some relief. I have to keep reminded myself it has not been very long since my surgery and I am still healing.

Hi luv4pj,

Recovery from ES surgery is often a 3 steps forward 2 steps back process. As nerves heal, they can cause pain, tingling, burning, & the like. I remember having post op days where I would feel great & then all of a sudden, I’d have days where I had pain & felt like all my recovery had been lost. Fortunately, as time went on, there were more & more good days & less & less bad days until all days were pretty good.

Complete nerve recovery often happens, but many of us are left with a little residual nerve pain. For me it’s a reminder of how far I’ve come since my surgeries but thankfully it doesn’t impact my life significantly. Some people do find that a low dose of nerve pain medication is all that’s required to keep the pain away or at least at a level where it isn’t taking over one’s life. Our moderator Jules takes amitriptyline because of long-term post op nerve pain. That has helped her tremendously. I know of other forum members who take Gabapentin (Neurontin) or other meds like Lyrica which have helped them.

Bottom line: DON’T PANIC! Your body is at work mending what was damaged. You will have good days & bad days for awhile but in a couple of months, the days will be mostly good. Just be patient, listen to your body, & rest when it tells you to. Don’t push yourself when you’re tired, & your recovery will be quicker.

Thank you Isaiah and Snapple! I have actually not had that bad of a day today. My throat is still bothering me today but not as bad as the past 2 days. I took the Lyrica this morning and maybe that had some affect on it. I tried to take Gabapentin but it made me too loopy. I am trying not to panic. I am an RN and I and I am supposed to go back to work after my post op visit on August 4th. It hurts my throat to talk a lot and I teach at our hospital. All these “what if’s” running through my head… I’m sure you all know what I am going through.

luv4pj,

I’m so glad today is better. It is possible that Lyrica is making a difference although nerve pain meds usually take several days to several weeks to really “kick in”.

We’ve had a number of members w/ more strenuous/stressful jobs that have opted to return to work part-time after ES surgery & gradually move back into a full-time schedule. Since nurses typically work 10-12 hr days (my daughter is a nurse so I speak from her experience), you may find that is too much for you initially & easing back in to full time is better. You can set your healing back by pushing yourself too soon. Nursing is stressful enough w/o COVID-19 & surgical recovery. You’ll have added those 2 elements to your plate when you return in Aug. so starting back part-time makes sense.

Hang in there luv4pj. I hope the ups and downs even out soon and you are seeing steady improvement. These are wonky surgeries to recover from. I definitely had good and bad days with mine. Give it a few more weeks and see how you feel after binging some TV shows:)

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Hey, just letting you know you’re not alone in this problem. I had surgery almost two months ago and I’m hearing the “aggravated/damaged glossopharyngeal nerve” too with similar symptoms to yours. I had already been on Lyrica which did help but now I’m on Tegretol. They have their side effects for sure but overall I think they’re worth it for me. I feel way better after starting the Tegretol. The last couple of days I basically haven’t thought about my throat so that is awesome! I guess we need to be patient and know that our bodies are doing what they can to heal and it will take time. Take care.

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Thinking of you, I hope that the throat pain settles…I know I had some very good days so overdid things & it caused a pain flare up, so I had to learn my lesson on that one!
As Isaiah said I do still take a low dose of Amitriptyline- I had hoped to reduce it but still have some pain after surgery. But it has improved & I don’t get the numbness & tingling that I used to thankfully.
Huds to you & prayers…

Thank you so much Jules. I am really trying to be positive. I was feeling ok the first few days after surgery then all of a sudden the pain came back and has not left. My tongue burns and my throat has horrible pains that come and go. I know I need to be patient. Just frustrated and depressed at this point. After all the suffering, I thought I might see a light at the end of the tunnel. It just takes time.

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Keep strong, :pray: :hugs: :bouquet:

Jules,
Today has been especially difficult for me. My throat feels like it has needles in it and my tongue is on fire. My ear hurts too. I am taking a low dose of Lyrica right now. I have amitriptoline which is what you are taking. I wonder if I should try it. The doctor gave it to me a while back when he thought I had something else. What dose do you take and how long before it helps? I have a referral to a neurologist but it going to take a couple of weeks. I’m just desperate for this pain to go away. It’s the same as it was before I had my surgery. Very discouraged. I’m going to keep praying.

luv4pj,

I’m sorry to say that nerve pain meds can take several weeks to begin to really work. You may also need to ask your doctor to adjust the dose up a bit if your pain is very severe. Docs try to start you on the lowest dose they hope will work so you don’t get bad side effects. They will gradually increase the dose to the level of efficacy, again, in hopes of keeping side effects at the lowest possible level. You may be able to take Percocet, Advil (ibuprofen) or Tylenol (acetaminophen) in conjunction w/ the Lyrica or Amitriptyline. You will need to consult your doctor regarding this though.

I’m praying the tingling/burning/pain will resolve ASAP!
:heart:

So sorry that the pain has increased- hopefully it’s irritated nerves healing, but difficult to cope with! I agree with Isaiah- the medications do take a couple of weeks to work, so worth keep trying the Lyrica. I wouldn’t think it’s a good idea to take Amitriptyline as well, you would need to talk to the doctors about that. (I take 20mg Amitriptyline, it works well enough at that level, I get palpitations if I’ve had to increase it, but the prescribed dose for nerve pain can be up to 50mg)
There are quite a few different nerve pain medications; it can be trial & error finding the right one…hugs to you :bouquet:

I went back to the ENT today because I could not stand the pain in my throat any longer. They gave me another prescription for Oxycodone 5mg. They gave me 10 pills. Is it normal to have these pains in your throat? It feels like needles are sticking in the back of my throat and my tongue and throat burn. I know this is some type of neurolgia. I have an appointment at the neurologist on July 29th. I am just wondering if this is all part of the healing process and normal?? UGH?

Hi luv4pj,

Unfortunately, some people do get some significant pain during the healing process. This usually resolves or at least becomes more tolerable as the months pass. It can also be caused by the remaining styloid which often ramps up its pain/symptoms once the first side is removed & symptoms resolve nicely when it is removed. In the meantime, taking nerve pain meds & analgesics to help minimize the pain is a good strategy. It’s hard for your body to heal when you’re battling intense pain. My theory is that your brain focuses on trying to help you deal w/ the pain which slows healing a bit. Relieving the pain helps you feel better & allows your body to focus on recovery. It is critical that you take the meds on a schedule that keeps the pain at a tolerable level. If you skip a dose or spread your doses out too much, the pain may come back & “get ahead of you”. It can take a couple of days to “catch up” & get the pain under control again once this happens.

You may need to take the nerve pain meds for a number of months as nerves can take up to a year or more to fully recover. At some point in the future, you will be able to work w/ your doctor to start GRADUALLY cutting back on the pain meds to see if pain returns or if you can start taking a lower dose w/ the goal being to eventually wean off of them. As I mentioned before, some of our members have had to stay on nerve pain meds for the long term but they give the ability to function normally & enjoy life again.

I will be praying for your nerves to heal completely & pain to resolve.

:hugs:

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Some members have had Burning Mouth Syndrome- before or after surgery, irritated nerves :disappointed: :disappointed: A dilute solution of bicarbonate of soda can help with that; you can have a look online for the dilution if you wanted to try that as well as the nerve pain medication. I hope that the oxycodone helps with the pain & things settle for you soon, such a shame as you’d been doing well… :hugs: :pray:

Sorry to hear your pain is miserable. :frowning:

I’ve taken Lyrica for probably 18 months… I’m not a doctor or pharmacist so always consult your own experts… I had no issues taking both Advil and Tylenol with quite high doses of Lyrica. If I recall correctly, Lyrica is processed by your kidneys not your liver so taking Advil/Tylenol isn’t an issue. Again, do your own research - I find pharmacists actually know more about the medications that the doctors do and they’re easy to talk to, you don’t need an appointment or anything.

I’m currently on 600mg Lyrica and 500mg Tegretol. My pain level is the lowest it has been in ages. Every individual reacts to different drugs in their own unique way and the combinations/dosages that work for one person won’t work for another. It is a frustrating experiment to go through! Thoughts are with you, take good care.

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I guess set backs are to be expected. I’m just discouraged at this point. I was doing well then BAM! It hit me like a ton of bricks. Doctor only gave me a low dose of Lyrica 50mg. I did get the Oxycodone too but only 10 pills. I’m not one to take a lot of medications so it scares me. Being a nurse, I see all the adverse effects of opioids.
On a positive note, I have felt a little better today but I have done nothing but rest other than a short walk. Still praying for everyone!

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luv4pj,

Take note of what you said…you’ve done nothing other than rest & take a short walk today. Perhaps the increase in your pain is your body’s way of saying it’s not ready for more yet. It’s asking you to keep taking it easy for awhile longer. I needed a month post op to lay low. It seemed like forever. Listening & responding to your body’s requests for rest & a low activity level will go far toward pain reduction & faster healing. Let your family take care of you & the usual daily demands for awhile longer. You sit back & read a good book, watch a movie(s), nap, or whatever helps you stay calm & quiet.

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Thank you Isaiah!! I know you are right. I just told my family that I’m resting for the next several days. I am taking the advise that you and Jules have provided. I am so thankful for the support of this group!!

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