Aftermath: post surgery symptoms

What do most experience, even years, after ES surgery? What long term aftermath are we left with?

Nerve damage, post surgery scar tissue near carotid artery / jugular vein causing dizziness, speech problems from nerve damage affecting use of tongue, speech/memory/cognitive issues, headaches/ear aches, off balance, brain fog, localized piercing pain in neck, ear, eye or head, stiff/hardened neck mass and lack of range of motion in turning neck, vision problems, bloodwork flags?

What symptoms are most people left with post surgery and years down the road?

How many needed addition care or surgery thereafter?

Any body deformation plastic surgery needed for ES outer neck surgeries?

How much post surgery Eagle Syndrome symptoms do sufferers experience down the road?

Thank you❤️

Obviously not everyone sticks around after surgery, so we might not hear everything, although I think the ones who do tend to stay on here are maybe people who’ve not had the best experience, so need more support…
From what I’ve read on here, usually any nerve damage from surgery- facial weakness/ paralysis, arm & shoulder weakness, tongue damage & speech issues- seem to disappear within a few months. Scar tissue has been an issue for some; there have been some discussions about cold laser therapy which one of our members, @MusicGeek found helpful. You can search for that in the discussions. The other issues you mention I can’t recall members having; bloodwork, vision issues, neck mass…
Personally, the vascular issues that I had have 95% + resolved, so surgery was a success for me. I do still have issues with the Trigeminal Nerve, but it’s better than it was, I still take low dose Amitriptyline for that.
We have been seeing a few members with regrowth though & similar symptoms to before their surgeries; have you been able to get a new CT scan to see what’s going on?

See my reply on the Anyone have similar symptoms thread. :blush:

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I had my right styloid removed on August 2 of this year. I did not get the relief I was hoping for. I have had a chronic headache (right temple) for 6 years. Now, to go along with the headache I still have, I have pain and pressure in my right ear, at the base of my skull on the right side, in my jaw and my neck. I have a hard lump at the upper part of the incision. I cannot open my mouth all the way. My lower lip pulls to the left. My surgeon said I had a 50/50 chance of pain relief. The student surgeon told me I had 0% chance of getting relief. I just don’t know what to do now. I guess that the surgeon is off the hook as far as trying to find a fix? Whatever happened to “Do no harm”?

Lori, so sorry that you still have pain & that the surgery wasn’t successful for you so far. It probably doesn’t feel like it, but if your surgery was just at the start of August, it is still early days & you may well still see improvements. We have had members come back here months later, one member a year later to say symptoms had improved, so hang in there…It’s really too early to be thinking about finding a fix, not many members get instant relief from surgery.
Were you taking any nerve pain medications before surgery? They might help for now? I would leave it a bit longer, but at some point down the road it might be worth looking at physiotherapy, there might be exercises to do to improve your mouth opening. It does seem to be quite common after surgery, but usually it does improve with a few weeks.
Thinking of you, and hope that your symptoms do improve, sending you a hug :hugs:

Hi Lori,

I, too, am sorry for the symptoms you still have after surgery. As Jules mentioned, you’re still on the early end of recovery. Half of my tongue was paralyzed after my first ES surgery & it took 6-9 months for it to begin functioning properly again. Sometimes post op nerve pain sticks around for awhile. It can also come & go & come back again then leave again after awhile. This is a discouraging cycle but it does eventually get better. We have a number of members who found taking a low dose nerve pain medication helped a lot during their post op recovery as it reduced or stopped their pain enough they could focus on healing rather than on their pain. It would be worth it to discuss that option with your surgeon or PCP.

I expect that your lower lip will return to normal over the course of several months. It will be a gradual process. As far as your jaw goes, someone recently posted about exercises she did post op to get her jaw to open again as she had the same problem. I can’t remember who it was but hopefully she’ll read your post & offer her solution. You could try to work your jaw a little wider open each day, but if that is too painful, getting PT soon will be helpful. You can also continue to use ice in the areas where you have pain - 15 min on & 45 off. If ice causes worse pain, then try heat. Moist heat often works better than dry heat. You can purchase gel packs that can be warmed in the microwave, & once out, wrap it in a damp washcloth before using it.

Was the surgeon who did your surgery experienced w/ ES? If so, I’m sorry he & his resident were so negative about your chances of a positive outcome. In our experience on this forum, with hundreds of people who’ve had ES surgeries, I’d say there’s a much better chance of a reasonable outcome than 50/50.

I will pray for you & hope you begin to see even little ways you’re improving in the days to come.

:hugs:

Hi Lori!

It’s been awhile since I’ve been active on the site. I had my surgery last December and I am now closer than ever to feeling normal on my surgery side. It took a good three months for the lip paralysis to resolve. Looking back I’m not sure when I could start sleeping on that side of my head but it took just as long. Thankfully I am feeling so much better! I am so thankful I’ve had everyone on this site to answer questions and pull me through. The tips shared are coming from a great deal of experience so you are in good hands. I hear you when you say you hurt :cry: It sounds like you are still early in the healing phase so please hang in there! :two_hearts:

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I have numbness under my chin next to my incision. It doesn’t bother me. Just feels weird when I touch or rub it. My surgery was mid July.

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