Hello all its been a while since my last post but I’m back having not seen much relief from my surgery. As a reminder I had my left styloid and hyoid trimmed in June of 2022. My surgeon said after surgery that it seemed the angle of the styloid caused crowding with the nerves but he also noted that the passage they come through the skull was narrow. The only issue that seems to have been helped is allowing me to evacuate my bowls more constantly. However the symptoms from irritation of my glossopharyngeal nerve and accessory nerve are getting worse. Specifically the bitter taste on my tongue is getting stronger and now turning into a burning sensation along with more jaw pain. My shoulders neck and arms are always stiff and aching. I can’t look up or raise my arms for any amount of time. I’m still on the max dose of 3 different BP meds and my BP is still high. I’m still suffering from general abdominal pain from my chest down to my pelvis that follow my vagus nerve. I’m now also suffering from bladders spasms and all test for that have been negative. I’ve also started having days with major pain and flu like body ache. It happens a couple times a month but I’m in bed for a day or so to recover. Also experiencing pain patches all over my body. Kinda like a sunburn that hurts to touch but nothing can been seen. Went to neurologist and they did a vascular mri and head and neck mri and found nothing concerning other than a pars foramen cyst that isn’t an issue now but will need checking periodically. It was noted in the review of the mri that the area of the styloid was not well imaged so I’m having another one soon. I’m frustrated because every provider I’ve seen after surgery including the neurologist has just shrugged their shoulders and have no advice on what I should do or how to fix the issues. They hear eagles and its like they immediately just assume they can’t help. I’ve been on amitriptyline for a few months for the nerve pain and bladder issues with no relief. I’ve now switched to lyrica in hopes to get some relief. I honestly just don’t have any idea what my next step should be and trying to balance a job and raise a 2 year old leaves me with so little time to research and find my own solutions I just feel like giving up. The worst time is when I’m trying to fall asleep at night, the taste and burning in my mouth are so strong It keeps me up and is just a constant reminder that things are going to get worse before they get better. But I’m starting to lose hope that they will ever get better.
I’m so sorry that your surgery hasn’t helped you, that’s tough…I can’t remember who did your surgery, do you know if the styloid was trimmed right back to skull base? If not & the foramen where the cranial nerves exit the skull has been noted to be an issue then there could still be crowding- it sounds as if the nerves commonly affected by ES (accessory, glossopharyngeal and maybe the vagus nerve if you’ve had digestive & BP issues) are still being compressed somewhere…
If it’s at all possible, a FIESTA MRI is good for showing the nerves, so would be helpful to see if they are being compressed where they exit the skull. Would you be able to get a referral for one from a neurologist?
I’m not as knowledgeable about anatomy as some of our members, I’ve tried googling the pars foramen but couldn’t get an answer as to where it is…if there’s a cyst in the same area as the cranial nerves exit the skull then could this be the issue? Were you given any info about the cyst?
There are other nerve pain meds which could help if you’re not getting any pain relief from the amitriptyline, and if the Lyrica doesn’t help. You can also try a mouth rinse made from bicarbonate of soda (baking soda) and water, sometimes that helps with burning mouth…
I can’t imagine dealing with what you’re having to cope with as well as working and having a toddler as well, I hope that you can get some answers soon
Sorry it’s actually called a Pars intermedia cysts and it’s on my pituitary gland unrelated to eagle. Just something of note to keep track of. Dr. Aninno in Boston he got as far back to the skull as he could but had to stop because my heart rate kept dropping.
I’m so very sorry for your suffering. As you know, something is still compressing your nerves. I would suggest sending your data to Dr. Trevor Hackman in Chapel Hill NC, if for nothing else than his opinion. Clearly you need additional help and since Dr. Hackman regularly deals with this at the skull base, maybe ( ) he would give it a go. The other thought is Dr. Lo in NYC… this spot may be out of his scope, but he is used to working in this area as well.
It is terribly frustrating that those who ‘should’ know nerves the best, Neuro’s … wash their hands of this condition.
Hoping relief is on the way for you.
Hi @Rickstarbird -
I’m also sorry to know of your current suffering & wish you’d had a better outcome. I’m glad the cyst isn’t likely involved in your current pain & symptoms. It does sound like you still have nerve compression somewhere. We’ve had a few members who developed a lot of scar tissue from their ES surgeries & that continued to compress nerves but once the scar tissue was removed, then recovery progressed more completely. I believe there are non-surgical treatments available depending on where & how deep the scar tissue is.
@Jules & @Leah have given you great advice. I’d probably start w/ the FIESTA MRI to see what’s causing the nerves to be angry & then proceed with your next steps once you have an answer to that. FIESTA MRI machines are few & far between, but I’d expect there to be one in the Boston area w/ Harvard’s presence there. Getting a second opinion on the cause of your pain would also be helpful.
I know it’s not a long term answer but while you seek that maybe look in to using nerve block injections to see if they help pain/bitter taste etc? I looked in to block for hypoglossal nerve and was told a max fax expert could do this. But there are serious risks to facial nerve if not done correctly, so not to be undertaken lightly.
I would check prior surgery did really remove at skull base on scans as I am not the only member who has needed revision surgery as styloid was not completely removed to skull base. Take care. D
Hi @Rickstarbird - I am sorry you are still having issues unresolved by the Eagle’s surgery. Have you been evaluated by a rheumatologist? Some of your symptoms sound like some of mine that are being caused by rheumatoid arthritis. There are other autoimmune conditions that occur with RA or independent of it that can cause similar symptoms.
Knowing your toddler needs you may be your greatest source of strength to carry on. Often being there for our loved ones who need us can motivate us to keep going & to search for solution/improvements for their sake, not our own. Stay strong. D
Good that the cyst is nothing to do with your symptoms
Thanks you all for the advice and kinda words. It helps to know I have options and support.
We’re here for you as long as you need us, @Rickstarbird! Please let us know if you’re able to get further testing & what the results show.
I’m saying a prayer for you right now.
The pain while raising arms sounds a LOT like TOS (Thoracic Outlet Syndrome). I recently had a significant amount of symptom relief from TOS surgery, but I still have a lot of Eagle syndrome symptoms.
I think TOS and Eagle syndrome are likely to be comorbidities. In fact I seem to be the opposite of you, where I got the TOS fixed first but my ES is still unresolved
I traveled to a very renowned TOS surgeon in Istanbul (kamranaghayev dot com) for my TOS surgery whose unique PURE technique for TOS surgery is much better and safer than other methods. Perhaps you can contact him?
@Rickstarbird check my post about MRI contrast toxicity. Burning paints and aching muscles everywhere is one of common symptoms.
Hi @Bowser! Welcome to our forum. The information we’ve gotten regarding ES surgeons in your country indicates they prefer the transoral (through the throat) surgery and don’t do transcervical (through the neck). It is the general consensus on this forum that people who have ES surgery done transorally don’t have as good recoveries as those who have transcervical surgeries if the styloid is cut back short enough. Going through the neck allows surgeons to see the nerves, muscles, & other soft tissues & to have better & more extensive access to the styloid than in transoral surgeries. That’s not to say transoral surgeries are never successful because we do have members who’ve had great outcomes, however, we’ve also had a number who needed revision surgeries later because the styloids weren’t cut back close enough to the skull base.
If you had a transcervical surgery, it’s possible your styloid was left too long, thus your symptoms remain. Also of note is that it can take 6+ months for symptoms to really disappear after an ES surgery though some usually go before then.
Whoa thank you that information comparing surgical methods is very useful.
I should be clear: I had TOS surgery and have been diagnosed with ES but haven’t had ES surgery yet!
For some reason, I thought you’d had surgery. Sorry about that!