Immense pain and still feeling symptoms 6 weeks post surgery

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Hey everyone,

I’m new here. Its my first post. I’m 26 years old.

I will try to explain myself and be as short as I can be.

More than two years ago (April 2019) I started to feel an odd pain in my left side of the neck. After Few days I remember I literally felt three is a bone in my throat that I couldn’t reach.

For 6 months I did all kind of tests, MRI, and more. Doctors said to me all kind of things, but none of them mentioned the syndrome. At that time, I didn’t know it existed.

Obviously. During this time I suffered heavily. My main symptoms were the feel of the bone in my throat that led to horrific pressure in my throat and neck, but the worst pain was when I spoke. I literally felt the pain gets harder and harder as I spoke. I had times over those 2 years I literally couldn’t speak for days-weeks, as the pain was so hard. It changes my whole life.

Generally, The pain was at degree of 6/10 for month, and then 10/10 for a month, for over 2 years. Over 2020, the pain became more long, and the waves of the pain became more often.

Approximately After a year from onset of pain, after multipole drugs and testes I tried didn’t help, Based on my description, the prof suspected I have the syndrome so told me to make CT scan, I have done so , and it showed that mu styloid on the left side of the neck is 3.6 cm [it also showed my right side is 3.5, but i felt nothing on the right side). based on this, and my description, the prof diagnosed mw with the syndrome.

At this stage (middle 2020), he recommended not the make the surgery as long as I can stand the pain, because he said it was so rare and the surgery a bit dangerous,

Since then, as I said, the pain became harder and harder, from March-Aprril 2021 I almost couldn’t speak at all. Therefore, I consulted with him, and we decided to make the surgery, he recommended the intraoral way, with the davincy robot which he was familiar with.

I was desperate to make the surgery as I couldn’t cope with the pain anymore. Nothing I did or tried in those years helped.

The surgery was scheduled 6 weeks ago, on June 8. technically the prof sait it went well. I stayed at the hospital for the first 5 days, as I was in immense pain and the prof and doctors said it is better for me to stay so they can follow my recovery. I also got special pain drugs there.

The The following 3-4 weeks also were very hard, immense pain all around my throat, tonsils and neck. I could barely eat, speak and swallow. I was a bit frustrated, But, I must say i did felt baby steps, and the prof said it wat natural healing so i tried to stay calm, and was hopeful it will get better. As days passed, I was able to eat more, and speak (still with much pain) a little bit more.

As I said, prior to the surgery. my main issue was pain came from speaking.

back to the recovery - after 4-5 weeks, this week I got back to work and started to speak a little bit more. In the last four days I have been feeling exactly the pain that I had prior to the surgery. Again, I cannot speak because of the pain.

I am in so much pain right now and so frustrated. I was sure that after almost 3 years of immense suffering, the surgery would give me my life back.

I have another review meeting with the prof this Tuesday.

I have read on the site that recovery can take a while (even read that the healing can take up to several months).

I am just desperate to hear from you, people who have been through what I have been, if the recovery of mine makes sense, and especially, if someone else felt the exact symptoms 6 weeks after the surgery, and it disappeared a while later.

I can stand the pain of the healing, but I am so worried that the surgery wasn’t helpful and the problem is not solved.

Thank you so much, really hoping for your help with this.

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Here’s links to a few discussions I found which might be helpful to you…like you’ve read it can take up to a few months, even longer sometimes for nerves to heal fully. It sounds like going back to work has set back the healing a bit. Hopefully others will chip in too with advice & encouragement. Thinking of you…

https://forum.livingwitheagle.org/t/intra-oral-surgery-who-has-had-this-who-already-had-tonsils-out-previously/8146/33https://forum.livingwitheagle.org/t/surgery-for-eagles-is-usually-successful/608

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Hi Rogi,

I’m very sorry for what you’ve been through but agree with Jules. Even though you are 6 weeks out from surgery, nerves can take a long time to heal. Since your vagus & maybe glossopharyngeal nerve (they affect your ability to speak) were so impacted by your elongated styloid, they may need more time to recover. Going back to a job where you have to talk a lot while you’re still in the early stage of recovery will slow your healing down.

Nerve recovery can be a forward & backward process. I would have several days where I felt good then several days where I felt pain again. After those passed, more good days would follow. Eventually, there were mostly good days & only a bad day once in awhile then all good days, but that took about 9-12 months for me.

It would be good for you to ask your surgeon how much of your styloid he removed. Having it removed back to the skull base gives the best results, but many doctors worry about damaging the nerves in that area so they leave 1 cm of styloid behind. For most people that is fine if the tip of the remaining styloid is smoothed off. Other doctors just cut the tip off the styloid & leave much of the elongated styloid in place. This doesn’t usually help.

Another thing to know is that sometimes both styloids have to be removed for the symptoms to go all the way away. I would say if your pain remains at such a high level, you should talk to your surgeon about the possibility of having the other styloid removed. I recommend waiting at least 6 months in between surgeries. This allows the first side to heal more completely before your body is trying to undergo a second major healing project. Many doctors now are doing surgeries 3 months apart for bilateral ES. From what I’ve read from some of our members, this can slow recovery for both sides & cause a more painful recovery overall.

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Thank you so much, its definitely encouraging to hear from you. I guess coming back to work didn’t help my recovery Especially as my work demands a lot of talking. I tried to speak for 3 minutes top, and then be quiet for hour, and so on. Maybe even that is too much.

its just so frustrating. i can stand the pain now. although i haven’t spoke much in this week, but what scares me the most is the the thought that the surgery wasn’t successful and i will have to deal with the symptoms in the future. i can’t even imagine how i will do this. especially the fact that i can barely speak, its the most difficult thing to me.

i am trying to stay calm and be optimistic, and let’s see what the prof will say on Tuesday.

Isaiah - If I remember right. The surgeon said to me he took out 2cm of the styloid. He did mention that although my original styloid wasn’t so long (3.6 cm) the tip was very sharp.

About what you said, is it possible even though I haven’t had any symptoms on my right side at all?

Thank you so much again. i will keep you updated after the review.

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Staying calm & optimistic will go very far in helping you recover. Worrying & fretting & being afraid nothing has changed will keep your symptoms flared up because it causes tension in your body & releases cortisol. High cortisol levels cause inflammation which causes pain. Being calm & relaxed does the opposite. It allows your body to heal.

Recovery from ES surgery is a test of patience. Since the tip of your styloid was very pointed/sharp, it may have caused some injury to the nerves & not just irritation. That means recovery may take longer. It might be necessary or helpful for you to see a speech therapist - the type who works with someone who has had a stroke because they will know how to help you exercise your throat & vocal cords in ways that can strengthen them slowly. It’s like training for a marathon - you don’t go out & just run 26.2 miles. You start by running one mile, then two, and so on, gradually building up to the longer distances. That will likely be the case with your voice. It sounds like you’re trying to do that which is good!

It sounds like your surgeon cut your styloid adequately short, but if the styloid was very thick or curved, what’s left could continue to cause problems. I will assume your doctor knows what he is doing & cut off what he felt was necessary for you to recover well.

If you continue to have a lot of pain beyond 2 months after surgery, it would be good to talk to your surgeon about prescribing a nerve pain medication. You will most likely not need to take this for the long term. These medications can take several weeks to start working, & it can also take time to figure out what strength of the medication works best for you. These meds can be very helpful with recovery & also with getting on with your life.

In response to your question about the right stylolid, I would wait to see if anything changes for the worst. If you get new symptoms or continue to have significant pain, it could be the cause. Sometimes an elongated styloid can cause “crossover pain” i.e. pain on the opposite side of the body from where the long styloid is. For the moment, focus on healing from your recent surgery, listen to the counsel from your surgeon on Tuesday, and listen to your body & try to rest when it asks as you recover. I feel confident that 6 months from now, much of this will be “history”, & you’ll feel much better.

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When you say the syndrome, I presume you mean Eagle’s syndrome? I ask because there are several and these syndromes all have very similar symptoms. That said, your story sounds very similar to mind. My issue ended up being Hyoid bone syndrome. You can read my post here: Diagnosed with hyoid bone syndrome - #9 by notyouravg

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I would also take a read of this: Diagnosed with hyoid bone syndrome - #28 by notyouravg

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notyouravg,

Thank you for sharing your thoughts. Sometimes it’s hard to know what is causing the symptoms so more information is better.

Did you end up having hyoid bone surgery at Stanford?

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yes i meant the eagle syndrome.
thank you. i read everything you published, and it is similar to mine. it made me more fearful that this is what i have.
instead of tuesday, i will go and see the prof today, i am felling on the edge… i cant wait any longer.
i just feel i cant stand the pain longer and all i want is a little bit of certainty.

what hepled you? did you end up having hyoid bone surgery?
from what i read it sounds more rare than the eagle syndrome.

will be happy if you share more about your story. i am just so frustrated and don’t know what to do.