I would like to know if anybody suffering with ES has problems with drinking coffee or eating acidic foods or is it just me. Red wine and coffee and certain foods worsens my fatigue and “lump in throat feeling” and ear ache x10. My theory is that the nerves around the styloid that are already inflamed become more agitated when I consume these things. I don’t have a history with acid reflux so I don’t think anything was damaged from acid in my throat region.
The following is a list of my symptoms I have dealt with for 5 years.
Feeling of object persistently stuck in right side of throat
Pain on the right side of throat and base of tongue
Pain radiates towards the ear and causes severe earache
Headaches
Ringing ear
Right side face pain
Lightheaded and unbalanced
Weakness
Fever
Chronic Fatigue
Sensitivity to acidic foods and drinks (will make symptoms worse)
Starting to get heart palpitations the last 6 months
Depression and suicidal thoughts
Break down in relationships
So far I have had Tonsillectomy, Thyroid R/H removal (benign tumor), antidepressants, and cortisone injections. My CT scan did show up an elongated styloid process before all my procedures 4 years ago, but my ENT wanted to try everything else first. He has now referred me onto another ENT that has experience in styloidectomy. I have a consult with him on the 23rd April.
I am extremely fortunate I came across this website and I have found much comfort in reading many peoples stories, so thank you everybody, it cant describe how it feels knowing I am not alone anymore.
I have had most of your symptoms but on the left side for six months. Coffee and acidic foods are definitely a problem and my stomach stays upset all the time from almost everything I eat. The worst is that feeling of the lump in the back of my throat that won’t go away.
I diagnosed myself after watching the episode of “The Good Doctor” that featured Eagle. Antidepressants were already on board from chronic pain I have due to an entrapped peritoneal nerve in my right leg which required surgery. Surgery for Eagle was planned before the corona outbreak and having to wait is scary and depressing. I am so glad you have been able to get a consult and possibly your surgery back on schedule!
Thanks to everyone on this site for providing a listening ear. I’m looking forward to hearing about treatment/surgeries getting back on track soon!
Your symptoms all align w/ those caused by ES. Every person w/ ES experiences it a little differently so symptoms from person to person can be very different.
The vagus nerve is our most extensive cranial nerve & is one that is almost always affected by ES. When irritated it can cause pain at the back of the skull, throat pain, vocal loss, heart & blood pressure issues, body temp dis-regulation, gastrointestinal issues & many other problems. The trigeminal nerve is often the cause of facial pain, headaches, ear pain, tooth pain, eye pain & other symptoms. Headaches & heart palpitations can also be caused by vascular compression of either the internal carotid artery or jugular vein. These symptoms are often most notable when your head is in a particular position where the styloid is compressing one of the vascular tissues mentioned. Vertigo, fainting spells, pulsatile tinnitus & high blood pressure inside your skull (intracranial hypertension) are also often symptoms of vascular compression.
I had heart palpitations & some light-headedness as well as tinnitus, headaches, face pain, pressure behind one eye & many other odd ball things. I had my ES surgeries in 2014 & 2015 & thankfully am 95% improved.
It is important for you to have a good understanding of the surgeon’s approach before having ES surgery. The most critical thing is that the doctor will remove the styloid back to the skull base (unless it’s impossible w/o causing nerve damage) & will smooth off any part that is left. Removal of the styloid hyoid ligament is also important if it has any calcification on it. Doctors who do intraoral surgery often just “snip the tip” off the styloid process & call it good. This IS NOT good for two reasons: 1) the remaining styloid may not be short enough to prevent further nerve irritation 2) the remaining styloid process can regrow so a follow-up surgery may be required.
Do not be intimidated if the doctor tells you it’s a dangerous surgery & doesn’t really help. There are doctors who are qualified to do & even have done styloidectomies who will not be supportive of their patients & will try to scare them away from having surgery. The surgery is a major surgery & as w/ all surgeries there are risks involved. However, when done by a skilled surgeon, ES can basically be cured & the symptoms will mostly resolve (this can take up to a year after surgery…nerves tend to heal slowly).
Our members from Australia have had a hard time finding good ES surgeons. I hope the person you go to see is wonderful. We would love to have another name to add to our doctors’ list for your country.
Thank you for the confirmation, I was worried that the acidic coffee and acidic foods were unrelated to ES and I never read anywhere that was a symptom. Initially my ENT thought all my symptoms were in my mind and suggested I see a shrink. I am just thankful he finally took ES into consideration and referred me. My body literally feels like its shutting down if I have a coffee consecutive days, I feel so much inflammation and a feeling of a huge object in my throat that start to get a fever.
There is a good chance I may have to wait for surgery due to corona, but I think elective surgeries bans are about to be lifted in Perth. I am assuming the surgery would be an elective? I will find out a lot more on Thursday. fingers crossed.
I hope we both get back on track to surgery asap!
Thank you for the info, your thoughts of removing the styloid back to the base of skull is very helpful!. Can this be achieved via the intraoral approach or external surgery only or both? I had already planned on asking him about what his plan of attack would be, and now I will be definitely asking about this!
Having lost “the best years of my life” to this I want to go all in on removing as much as possible.
I will post an update after my consult
Hi simon,
Total styloid removal (& full ligament removal) can be done by either approach but is “safer” via the external approach as nerves can be monitored & vascular tissues visualized. Total styloid/ligament removal intraorally requires several incisions in the throat & roof of the mouth. It seems only a few doctors who do the intraoral approach are familiar w/ the technique for total styloid removal (& ligament removal). Most will just shorten the styloid but not attempt to fully remove it. In their defense, there are also surgeons who use the external approach who also leave a bit of styloid behind, but usually it’s not more than the natural styloid length which is 1" or 2.54 cm. Even that small amount can still cause problems for people if the styloid is very angled or thick.
Because incisions are made in the throat for intraoral surgery, there is a higher risk of infection post op & many of our members who’ve had intraoral surgery have had to deal w/ this. I’m not giving you this information to scare you or intimidate you but so you’re informed ahead of time. Either intraoral or external surgical approaches can be effective if enough of the styloid is removed.
Other questions to ask your surgeon are - is surgery done inpatient (hospital) or outpatient (surgery center). If inpatient, how long will you be in the hospital? Are a course of steroids prescribed post op to help control swelling or is a drain tube put in place (if a drain, for how long)? What type of pain meds are prescribed? Expected recovery time (caveat - surgeons almost always err on the side of quick healing…experience dictates that healing from ES surgery is not quick. It can take up to a couple months post op before your energy returns, & you start feeling fully functional, & up to a year or more for nerves to really recover. ES symptoms recovery happens gradually & can begin to be noticed as soon as you wake up from surgery).
You can use the magnifying glass icon above right to search - questions to ask the doctor, also, what to expect during recovery. There are many posts on these topics that will cover anything I’ve forgotten.
Hope the appt goes well & that you don’t get dismissed. Sounds like you’ve already read up quite a bit, that’s a good idea, be as informed as you can be before you see the surgeon.
Coffee doesn’t bother me (thankfully!) but OMG spicy food is a killer for me. Like anything with a bit of spice will leave me in tremendous pain and it lingers for literally 24-48 hours. It’s awful, I avoid spicy at all costs. I mentioned it to my neurologist and he said it made complete sense, we’re dealing with hyper-sensitive nerves and there are going to be triggers (spicy, acidic, whatever) that will set it off. Totally know how you feel, awaiting intra-oral surgery once elective surgeries are back on the table in my area. I had a surgery date and now I’m just on hold.
Regarding intra-oral vs. external I think both have risks and advantages, the key is the surgeon performing it regardless of the approach. My surgeon has done this many times both externally and intro-orally and prefers the intra-oral. He is a skull base surgeon and says he can remove it all the way so that sounds good to me. Who am I to disagree? Lol I put my faith and trust in him.
I’m so glad you’ve found a surgeon in whom you feel great confidence! That’s so critical when facing this type of surgery! I was also fortunate to have that experience & my surgical results have been positively life changing.
That 24-48 hours is a killer! then it can take even many more days to come back to a level of discomfort that is manageable.
I had a phone call from my previous ENT today, and informed him iv been getting "some "relief with diazepam, this was a mistake because he went back to his old idea that it’s mostly in my mind (even though he clearly believes and has stated I have ES)
This was after I told him that it only slightly lessened the lump and tightness feeling in my throat. He suggested I keep on managing my ES with other drugs and valium.
I was only taking 6mg once a week, which is nothing.
I will be trying by best to convince my new surgeon on Thursday to remove the entire styloid, if I am not successful I will need to find another surgeon in Melbourne or Sydney. Unfortunately the are only about 4 surgeons in Australia that do this procedure, hopefully Isaiah knows the names of the other surgeons if needed.
Glad you’ve found a doctor you’re confident with…interesting that a skull base surgeon prefers the intraoral approach. Is your doctor on the 2019 list? If not maybe you could let us know his name after surgery? And let us know when you get a date so we can wish you well!
Update.
I had a fruitful consult with my ENT, and he has agreed to go ahead with removing most of the styloid process and also removal of the ligament which is also calcified.
I feel very fortunate to have found a surgeon with good bedside manner and willing to listen. Unfortunately like many other elective surgeries during this covid19 period, There will be longer than usual wait times, but there is a chance I can get in much earlier, so here’s hoping.
Just having a clearer path forward and a positive diagnosis of ES, it has already helped me mentally and to stay positive. Hopefully I can focus on the light at end of tunnel even when I am going through my lows and symptoms are flaring up.
That’s good news; knowing you have a diagnosis & a treatment plan can put your mind at rest to a point. I hope that you do get in sooner than expected!
There’s lots of info all about what to expect after surgery if you want to get prepared- you can use the search function. Best wishes!
I was just reading through all the recent posts, especially the ones regarding questions to ask your doctor before surgery. BECAUSE…I have surgery scheduled next week in Chattanooga! Yay! I haven’t seen my doctor for several months so I’ll only have a short window of time for questions on surgery day. It will be intra-oral outpatient surgery. The thing I don’t know is whether he will remove the entire styloid or just shorten it. I do know he will remove my tonsils. Any last minute advise? I will get back with you post-op.
That’s good! I hope that all goes well for you! I don’t know if it’s possible but to find out what the doctor’s plan is before surgery is the best advice I can give you- to go through surgery & find that only a little bit is removed is not ideal, it may not be enough to help with symptoms. So if you can either get in touch with the doctor beforehand, or search posts on here to see if anyone has experience with him might help?
There’s lots of info you can search for about what to expect after surgery, & a surgery shopping list too will help you get prepared too.
Best wishes!
Besides checking on how much styloid he will remove, verify that he will also remove the stylohyoid ligament(s) if calcified. If he doesn’t fully remove the styloid make sure that he will smooth off the tip of what remains. Be adamant that you want him to remove the styloid(s) as close to your skull base as possible & stylohyoid ligaments if calcified.
Those two procedures are what can make the difference between reduction/remission of ES symptoms or not.
I just read the description of this “The Good Doctor” episode and the sore throat/hoarseness combo is exactly how my ES started. Obviously a medical DRAMA so I probably won’t also have a stroke, but I need to watch this like yesterday!
