Thank you Jules, I didn’t know where or how to post if I am honest. Your reply has just confirmed what I have read and researched. I am currently compiling a pile of information to be printed out. I have bounced between departments since my my tonsilectomy in 2004 with various symptoms. There was very little information on the web back then on ES and I’ve given it very little thought until just recently when I realised that my left had grown itself a hook and was beginning to grown under the back of my tongue. When my headache/migraine was severe one night I asked my husband to gently rub under my jaw whilst I pressed the styloid in my throat/mouth. This gave relief from the migraine which returned when pressure was taken off. I’ve been investigated by the gastro doctors for IBS/IBD, the cardiology department for arrhythmia, neurology even checked me out a few years ago for intercranial hypertension. I am almost sure these pesky styloids are to blame for the majority of my symptoms and will not be leaving the hospital next week without someone taking me seriously and a plan of action going forward. I am just so thankful I found this site although it does make me both sad and happy to know that so many people have the same story as me. Fingers crossed the Naval Surgeon I see next week likes a challenge.
Another question just came to mind, am I within my rights to request a second opinion from a specialist of my choosing, can I get next week’s specialist to refer me to one of the UK’s known ES specialists? Or do I refer myself and pay privately if next week’s appointment doesn’t go as I hope?
Some of your heart symptoms & for sure your gastrointestinal problems can be caused by irritation of the vagus nerve (as Jules mentioned).
You’re very resourceful to have found a way to relieve your migraines. I’m sorry the fix isn’t practical over the long term. I fully agree w/ you that the symptoms you’re experiencing will disappear or largely disappear when your styloid go.
I’ll let someone from the UK answer the question about getting a 2nd opinion referral as I’m not familiar w/ the UK system as I’m in the US.
You should be able to request a 2nd opinion, there’s info on the NHS website about it. I was lucky in that the consultant wanted to get rid of me I think, so was only too happy to refer me to Mr Axon. Otherwise you could see one of the more expert doctors privately & then have the treatment on the NHS if it’s going to be a load of hassle & you can afford it?
Did they find you had IH? Jugular compression can cause that too.
Yes I had IH. I cannot remember if this was pre my ES diagnosis or after. The last 15 years have been a blur of bringing up 4 kids whilst juggling an illness I’ve mostly been told was all in my head. When they discovered my endometriosis in 2011 I cried non-stop for days. Even my own mother told me from the age of 9 that my pains couldn’t be all that bad. I feel like I’ve been fighting for myself for a lifetime already. My arrhythmia was dismissed as anxiety, I was given a low dose of propranolol and it was ignored until the most recent ecg picked up bradycardia. Then the GP had to ask me why I was on propranolol, all this whilst my headaches are getting worse. I’ve passed out on occasion even in work and they just dismiss it as mental health issues. I’ve got so much information now I feel like an ES specialist. I mean it when I say I’m not leaving the hospital next week without a plan of action. I’ve put up with the gradually worsening ES symptoms for 15 years now.
@Isaiah_40_31 it makes me want to cry to think these pesky bones could be the cause of the majority of my symptoms
Cry with joy that you now know who the perpetrators are so you can get rid of them! Your journey may go on a bit yet until you find a surgeon who will do your ES surgeries, but at least you know what needs to be done now. I do agree with Jules - you want to have them removed externally as you do have some symptoms that seem vascular. Intra-oral surgery does not allow the styloids to be removed as completely nor does it allow for the stylohyoid ligaments to be removed & you may have some calcification on those as well.
You’ve done a very heroic task raising children while feeling so terrible. I’m so sad to hear you also were led to believe your symptoms were basically psychosomatic! That is beyond tragic (but sadly has happened to more than one forum member).
Do your best to get in to see one of the more experienced doctors if you have any questions about the one you see next week. Even if it requires traveling, Mr. Axon is an excellent surgeon & quite experienced w/ ES. He would be a good second opinion doctor for you.
Please stay connected here. We want to support & encourage you. I will be praying for a good appointment for you next week.
You’re amazing & so strong to have coped with all that! Well done to you, really hope that your appt. goes well! Do you have anyone who can come with you for support? Consultants can sometimes be daunting!
Hubby is coming with me so I won’t be alone. I have fire in my belly now though so I wont be taking no for an answer x
So tomorrow is the day I see the ENT consultant and I’m really nervous. My pain and swelling is being treated really well with ice packs and my swelling has gone down substantially so I’ve convinced myself that they will take one look at me and think me crazy and I really need them to listen.
I’ve been writing everything down. I am armed with a load of written evidence. But what if they don’t listen? Bear in mind I’ve been back and forth to various departments since my diagnosis in 2004 (left styloid grows into my throat and under my tongue and the right grows down my neck) and not one of those departments picked up that my symptoms (severe neck pain, chest pain, gastro issues, sinus tachycardia, bradycardia, headaches, migraines, eye pain, blurriness etc etc) could have been down to the elongated styloid processes that I have and it’s only through my own investigations that I suspect that I have both forms of ES. I know there is very little knowledge about ES and vascular ES but what if the consultant is offended and isn’t willing to listen to my very compelling evidence? I’m having an internal meltdown…HOW do I convince them to at least give me an updated CT (preferably 3D with contrast right?)
Does everyone have this wobble just before they go in to battle?
I definitely, definitely was plagued with self-doubt right before an appointment. It’s just so monumental, the pressure makes you feel super nervous. Trust it will go well, visualize a good encounter with the doctor and tell yourself you will do everything on your part to leave there with exactly what you want.
Yep, topsy turvy stomack before all of my appointments when I feel like I am trying to convince these doctors something is wrong that no one can see…a huge battle to prepare for. Here are a few tips I hope will help.
walking in with a 3 inch file of papers is NOT helpful. Write down 3-4 main symptoms (your complaints but dont use that word) and 2-3 of your ideas of what is wrong ie: vascular and/or vagus nerve compression related to abnormal styloid growth. this should all fit on a half page of regular letter size paper, anything bigger and they will roll their eyes. But make sure they see this small piece of paper, it helps them to see you are prepared and have some specific questions.
speak calmly and clearly looking them directly in the eyes, regardless of how you are feeling inside. This seems obvious but can be incredibly difficult given the battle armor you are wearing
the first thing you say is “thank you for meeting with me today” - again obvious but it immediately sets them at ease and shows your respect for their expertise. If a nurse or assistant sees you first say it to him/her as well, and then again to the ENT.
after you present the short list on your paper let them know you have seen research that supports the imaging you think you need ie: CT with and without contrast, etc and then ask what their opionin is for that kind of testing to visualize these structures (again showing your respect for their expertise)
the last thing you say is “thank you for listening to me today” if they did, if not thank them for their time and leave.
Long and short of the truth is there is no way you can “force” them to do anything but if you are presenting yourself in a calm, educated and clear manor your chances go up dramatically.
Sending you loads of prayers for this day, and remember to breathe (both IN and OUT )
Thank you so much that is very helpful
It is hard because saying too little doesn’t convey the severity of your situation and saying too much leads them to believe you are in the obsessive loony bin (even thought it is all true!) …there is a fine line
I completely get what you’re saying. This is where my fear lay, I dont want to come across in the wrong way x
I know how you feel with the anxiety! I was always like that…JustBreathe has given you great advice, I agree if you list all the symptoms including the weirder ones that we know are ES, they’ll probably not take you seriously. Hopefully they’ll at least refer you for a CT! Have you got someone to come with you for moral support?
Will be thinking of you, let us know how you get on, big hugs…
I’m a link in the prayer chain for you as you attend your appointment tomorrow (today for you - big time difference between UK & US!).
Thank you so much, I appreciate that.
Ok I think I am ready
I got this
Yes you do! Let us know how it went!