Mafre - Having your styloids poking you in the throat/tonsil area is most likely what’s causing the burning. Many ES patients are diagnosed w/ acid reflux & treated for such when they don’t have it. The throat & mouth are often “victims” of ES symptoms because they’re innervated by cranial nerves which are in turn being irritated by the elongated styloids &/or calcified s-h ligaments.
I’d call the GP & firmly let him know you want your ENT appt to be about ES. Optionally, you can try requesting the ENT doc to explore that possibility in the absence of your GP’s request.
Thanks @Isaiah_40_31 - I definitely have acid reflux as I have a hiatal hernia and there’s scarring in my oesophagus which has caused a stricture. But after I posted yesterday I spoke to the ENT and they said I can talk about both issues at the appointment so that’s a relief.
That’s really great news, Mafre! I’m glad your doctor is being supportive. Sorry to hear about the hiatal hernia though. My sister had that problem, but it’s healed up now. I understand it can be pretty uncomfy.
Hi all, just to update: I had my ENT appointment today and they confirmed that what I’ve been experiencing in the back of my throat is due to the ES. The doctor was great and could easily see the ES when I pointed to it. He looked at them and said “perfect” which wasn’t quite what I was thinking - he explained that the burning sensation near my tonsils was due to pressure on a nerve. I’ve been referred to a specialist at another hospital who will help determine if it’s worth the surgery. It currently feels a lot better and knowing that the sensation is caused by ES helps me cope with the pain/ discomfort and I don’t currently feel worried about it anymore. I am wondering whether it’s affected my oesophagus too as problems have flared up there ever since I prodded around at the back of my throat (could even be due to stress of ES too). I have an endoscopy tomorrow so more will become clear. Anyway, in regards to ES it all seems reassuring (and not “all in my head” as my GP bet me it would be!). I really appreciate the support and information on this group, it’s really been helping so thank you!!
HOORAY for progress & affirmation!! I will say that surgery is WORTH IT. Surgery is the only avenue by which you’ll be more permanently relieved of your symptoms. Even doctors that do ES surgery sometimes put patients off & say let’s wait & see how your symptoms progress. If you’re uncomfy now, the symptoms are more likely to get worse than they are to disappear. Based on my experience (& that of many others on this forum), you should advocate for surgery if the specialist tries to procrastinate.
My throat has been killing me over the last few weeks coupled with chest pain - after an 8-hour visit to A&E, heart problems have thankfully been ruled out.
Today, I have discomfort / tightness / mild pain in my throat around where my Adam’s apple is, up to just under the back of my jaw - it feels like I just want it to relax but it can’t.
And I have discomfort and difficulty swallowing - its feels quite laboured/noticeable - as well, I’m clearing my throat and have noticeable voice change (noticeable to me not to my wife) - my voice strains/breaks more easily than it did in the past - it feels like there’s liquid just sat in my throat waiting for me to clear it - it does clear for a minute or so but then returns soon after.
I had an appointment with my GP today to go over why my throat is painful even though my gastroscopy and barium swallow were normal and there was no sign of acid reflux. I was sent to have a chest X-ray to rule anything out there and have to wait a week for results. This has SCARED me!
Do all these symptoms sound within the realms of ES?
I’m currently chasing up a follow-up ENT appointment about my ES and today I was also given the notes from my ENT doctor’s appointment about the ES that took place just under a month ago:
C\O; SHARP, BURNING SENSATIONLEFT TONSIL
DUE FOR GASTROSCOPY TOMORROW (which I’ve had and returned a normal result)
NO NECK SWELLINGS
FLEXIBLE ENDOSCOPY; NORMAL PNS, LARYNX, HYPOPHARYNX
BIMANUAL EXAMINATION PAPLATION OF BONY STYLOID PROCESS
NEEDS TO BE REFERRED BACK [doctor] AT [hospital]
DISCHARGE
There are some spelling mistakes in there but I’ve copied what’s written exactly. Does anyone know what PNS is?
My throat problems feel like they’re driving me nuts - I need constant reassurance that I don’t have something that’s going to kill me - I know I have ES and I can rationalise to a certain point but then I have moments when I can’t rationalise and I feel really panicked. This forum certainly helps (thank you!) but how do you all deal with the anxiety that comes with ES? - I’m currently finding it hard to do anything sociable.
@Mafre, I could have written this exact same post about 2 weeks ago. We have very similar symptoms and concerns. But I’ve recently become more at ease about accepting the bilateral ES diagnosis and upcoming surgeries…and that there isn’t something else serious going on that is causing these crazy symptoms. After all, 4% of the population supposedly has elongated styloids with no symptoms. That’s not to say that you shouldn’t go get your heart checked out or your brain scanned and whatever else you need to do if that’s what will help ease your mind. I sure did it! I even canceled my first surgery partially because I was just not fully convinced that ES was my issue. I’ve now experienced enough crazy ES symptoms…and I’ve had the opportunity to talk to a surgeon with lots of ES experience…that I’m finally convinced and ready for surgery. I’ve also read a lot about what can cause this cluster of symptoms, which helped me rule out a lot of other nagging possibilities I’d wondered about. BTW, PNS usually refers to the peripheral nervous system.
Firstly I’ve googled PNS- it could be paranasal sinus, otherwise Peripheral nervous system, or Parasympathetic nervous system. Reading the report I’d maybe plump for the sinus one, at least it’s all okay. And good that your A&E visit showed no heart problems! Having the styloid processes mentioned in the report helps you too.
Are you waiting to see the same ENT, or wanting a new referral to someone else?
As for the anxiety, I think all you can do is remind yourself that to have major complications is extremely rare, your heart is all okay, and that this can be treated with the right surgeon. I’ve been there worrying about symptoms, so I know how you feel, but the stress won’t help- stress can increase inflammation, which could exacerbate symptoms…just keep the hope that you will get help in time…
Jules & redbird covered most of your questions & concerns. I will step in regarding the anxiety.
The vegas nerve is one of the cranial nerves which is frequently irritated by ES. It controls some gastrointestinal & heart functions, & can effect your anxiety level; thus, if your vegas nerve is being irritated by ES, it could be increasing your anxiety, stomach/throat issues & maybe even things you’re feeling in your chest. You could Google “vagus nerve” to get more information. Some forum members have opted to take anti-anxiety medications to help them through this difficult time. It is an option you might want to pursue with your primary doctor.
Vocal change certainly could be related to ES & has occurred for many people on this forum. It should clear up once your styloids/s-h ligaments are removed.
I’ve forgotten, do you have an appointment w/ one of the experienced surgeons in GB or are you still waiting for a referral?
Thank you @redbird773@Jules@Isaiah_40_31
It is reassuring to hear these symptoms could be related to ES - Looking at the vagus nerve and how it’s connected to the gut is really fascinating. Could all my gastro problems be caused by ES? They were certainly exacerbated when I prodded around at the back of my throat and fiddled with the boney ES - they literally got worse the day after I prodded around quite forcefully.
And 2 years ago, my gastro issues presented at the same time as the ES did. Could it really be that simple?
The last ENT doctor I saw said that the burning sensation in my tonsils was likely to do with pressure on a nerve from the ES.
But when I asked my GP if my gut issues and chest pain could be connected, she said that it wouldn’t be.
I’m still waiting to get an appointment with a new ENT doctor who I was told should be able to help. I was referred 1 month ago and haven’t heard anything, so I’m chasing up today.
I’m so fed up of feeling more and more physical problems as time goes on. I really hope it can all be fixed by correcting the ES.
Which doctor did you see in Bristol I’m seeing mr Saunders today in Bristol. I’m hoping he will do an operation on my right side as I can not live like this in pain and losing days with trying to sleep through it x x
I went today and saw a very good specialist. He said he would give me a general anesthetic and steroid injection into the problem area. If that does not work out then I will be going to do an operation through my mouth and taking my tonsils out then the styloid in the right side x… which I feel will probably be done in the future x
That’s quite a spike you have there! No wonder you’re in so much pain. The styloid process does originate from the temporal bone of the skull. The stylohyoid ligament runs from the tip of the styloid process to the lesser horn of the hyoid bone.
The suggestion of the steroid shot is fine but experience from this forum says that the duration of relief you’ll receive will be from a few hours to maybe a few weeks then your pain/symptoms will return. Please talk to your specialist about removing as much as the styloid as possible as this will give you the best end result. Unfortunately, the intraoral approach doesn’t allow as much access to the styloid process as does the external approach so the length can’t be reduced as much. The best case scenario is to have the styloid removed back to the skull base, however, having it taken back to it’s normal length (2.54 cm) has worked well for many people.
Since you have bilateral ES, you may notice all your symptoms aren’t gone after having one side shortened. Often the symptoms caused by the second elongated styloid flare up after the first is gone. Please be aware of this so you don’t assume your first surgery was a failure if your symptoms don’t fully resolve.
Glad you’ve found someone to help you but do keep the communication lines open regarding what you want so you get the best possible result from your surgery.
Thank you for your advise I will keep going with this doctor . I believe he is a good specialist feel very relaxed and comfortable with him . He explained everything even drawings.
- he explained that the burning sensation near my tonsils was due to pressure on a nerve. I’ve been referred to a specialist at another hospital who will help determine if it’s worth the surgery. It currently feels a lot better and knowing that the sensation is caused by ES helps me cope with the pain/ discomfort and I don’t currently feel worried about it anymore. I am wondering whether it’s affected my oesophagus too as problems have flared up there ever since I prodded around at the back of my throat (could even be due to stress of ES too). I have an endoscopy tomorrow so more will become clear. Anyway, in regards to ES it all seems reassuring (and not “all in my head” as my GP bet me it would be!). I really appreciate the support and information on this group, it’s really been helping so thank you!!
