I’m so sorry that you’re not able to see the doctor for another 5 weeks! Illness can’t be helped but then you shouldn’t have to wait so long for another appointment! It’s understandable that you’re exhausted…
Thanks @TML again for looking at the images…there are only 2 doctors that we know of in NZ that I mentioned earlier on in the thread, & yes some members are looking to see Prof Elliot in Australia, is that an option Matt and Denese, I’m guessing maybe not? Praying for you 
3 Likes
@Denese & Matt - Matt’s styloids are very long, reasonably thick & “lumpy”. We have learned that styloid angle, curve, thickness, and other physical features can be just as important as extra length when considering symptoms they’re causing. These are things that could be pointed out & discussed at your appointment as well, Matt.
2 Likes
Dr James Saunders here in New Zealand has been amazing, the problem is he is so over worked and busy.
We have lost so much from this. We sold our home as it was to big for Denese to try and maintain by herself with me being bed ridden for the first 3.5 yeas of this.
There was no help from ACC as its not an accident, they were auctly incredibly horrible how they treated us. Denese and zi both had breakdowns. She left her job to care for me the past 6 years but had to return to work as we are out of money.
I have no way at all of affording to see the Dr in Australia unfortunately not that I think I could handle the flight, I can barley go to the letterbox to check the mail. Im bed ridden again most days.
All I can do is hope they can see me at the hospital soon, but I won’t hold my breath.
Thank you for your kind words and supported
1 Like
Thank you. Im just not sure when that’s going to even be unfortunately.
Have tried all week to ring hospital, no luck at all. Tomorrow’s appointment is canceled because of sick doctors, so again we just wait.
Do you know how thick mine are? I did see a picture of three different types of styloid but not sure which type I have.
Can anyone please tell me what that round white thing is at the top of the styloid?
Also, im trying to understand why my horrible ear symptoms are on the left but its the right side that’s compressed? Have i got that right?
Thank you
It’s just the bone where the styloid process originates from, the temporal bone, I don’t think there’s anything sinister about it, just the way it looks on your 3D CT…
Ear symptoms can be from nerves being compressed, the glossopharyngeal nerve can cause sharp, ice-pick like pain, or sensations of cold or wetness. The greater auricular nerve can cause strange sensations in the outer ear. Ear pressure/ fullness/ underwater feeling can be from IJV compression. So it could be that your left side is pressing on nerves, as they are bothe pretty long & pointy! And also we do see sometimes cross-over symptoms, so pain etc can be felt the opposite side to where the worst styloid is.
2 Likes
Thank you Jules, yes I have this incredibly horrible yet feeling in my left ear, but not my right, its so annoying and just makes me feel unwell, kinda like toothache.
Sometimes I get pain, sometimes its just this wet sensation. You would swear you had an ear infection most days.
Appreciate your reply. Thanks 
2 Likes
Just on this while I remember for anyone perhaps experiencing these ear symptoms.
I find antihistamines 10mg cut in half in 12 hour stints really help. Not sure why this is, but it definitely helps me.
I’ve had weird sinus issues since all of this started. Blocked left nose, blocked /full ears, mainly left one, wet left ear, feeling like somethings stuck in there, and lots of ear wax build up, honey like sticky wax on the left ear, hard dark wax on the right.
Sorry to go into detail but if it helps anyone then fantastic.
Kind regards
Matt
2 Likes
The sinus issues can be caused by the trigeminal nerve. We’ve had a number of members who’ve had significant sinus problems & getting their styloids shortened helped them resolve or reduce significantly. As far as the ear wax goes, I’m not sure how that would be related except perhaps the nerves that are causing your ear symptoms are creating an irritation which is stimulating ear wax.
I just did a brief search & read that high levels of stress can cause excessive ear wax production. I’d say that w/ the severity of your symptoms, your body is under very great stress so perhaps that is a contributor to your ear wax.
2 Likes
I did feel like I had ear infections regularly, & had an enlarged & tender lymph node between my ear & jaw which I always thought it was down to impacted wisdom teeth, but this has gone since my ES surgery!
2 Likes
Thank you Isaiha
1 Like
That’s really interesting Jules because I’ve been under huge stress with all of thus as im sure everyone else going through this would be. I have had ear infection after ear infection 
Thank you.
2 Likes
Can anyone please help with suggestions for bad balance.
I’ve gotten worse of late and im not sure how to cope with this.
Currently im talking 10mg of Antihistamine tablet once a day that I cut in half with a pill cutter.
Unfortunately it really drys out inside my nose which irritates me but helps somewhat with the balance but not really if that makes sense.
Any help, suggestions would be wonderful
Thank you.
Some members have tried vestibular rehab exercises, I think they can help retrain your brain, you can look for these on YouTube, so it might be worth a try?
Otherwise it might be worth you asking to try an anticoagulant medication as these have helped- like Plavix, Brillinta, Eliquis, Xarelto, Diamox ?
For your dry nose, you could try something like Nozoil, it’s just a neutral oil which helps moisturise, I use it at might, you can get it on Amazon.
It’s horrible, thinking of you 
2 Likes
Thank you very much Jules, will look into these recommendations.
1 Like
Can anyone see from the images I’ve provided if I still have tonsil stones?
That was something the specialist said I had by looking at my original images
I’m sorry but I don’t know what tonsil stones look like in imaging so I can’t help you. I will say, for what it’s worth, there’s nothing that looks ominous to me in the image you posted.
2 Likes
Thank you Isaiah…
I will try and post better images.
1 Like
They’re uncomfortable, quite a few members have had them alongside ES, but not generally too much of a problem are they?
1 Like
I didn’t even know I had them until the scans were done and the specialist mentioned it. I’ve bought up a bit of white hard lumpy stuff that felt as though it was stuck in my throat, so they may gave all gone now? Im not sure.
2 Likes