Hello @Isaiah_40_31 thank you for your reply. It’s 4.00am here in the UK and another sleepless night of discomfort and pain. Yes, at least I am seeing Mr Axon in person, so I am hoping he will examine me, as any pressure under my ear/jaw gives me pain. I will also mention the styloid tip seems curved inwards and whether he thinks it is touching my ECA and if that could be causing any of my symptoms. I was disappointing to just receive a one line email from Mr Hughes office with no physical appointment to access me. I am nervous to see Mr Axon in case I am dismissed again. There must be a cause for these symptoms, its not just all in my head 
2 Likes
@Rosie - I’m sorry your symptoms are causing sleepless nights. I recently had a similar experience w/ a doctor I’d like to see for an inner ear problem (sort of but sort of not ES related). I sent him my CT scan & a very clear explanation of my situation & reason for wanting to see him, but he declined to see me because my problem isn’t the exact thing he deals with. I will say it’s a “close relative”, & he should be capable of helping with it, but he wouldn’t even talk to me so I could make my case. I am so sorry for your similar experience. It seems some of these doctors are just too busy to take the time to try to help those who may be a little bit on the outlier side. They need to expand their horizons!
1 Like
I’m sorry to hear that @Isaiah_40_31 it is disappointing when you cannot get to speak in person to the doctor, I feel for you. Up until now I have been blessed with good health. Apart from my car accident 8 years ago, when the NHS were fantastic at fixing my complicated fracture, I haven’t really had any cause to seek medical advice until now. I post an update, once I have seen Mr Axon. Thank you for your ongoing support.
2 Likes
So sorry that you’re having ongoing sleepless nights with all the pain, it makes it all so hard to deal with when you can’t even sleep…sending you hugs 
2 Likes
Morning all, just need a bit of advice. I will upload a pic of my neck last night. Left side where I am experiencing symptoms of ES. Does this look like thoracic outlet syndrome to you and could ES cause this do you think. The slight swelling below my ear is there all the time now, but the swelling above my clavicle happened last night.
Thoracic outlet syndrome can cause a swollen jugular vein, there are other causes though. ES doesn’t cause TOS, but we have seen that members with one vascular compression syndrome can seem to have others too (there are ones in the abdomen & pelvis - May Thurner and Nutcracker Syndromes- that seem to crop up more often), they don’t cause each other though…
It might be an idea to speak to your GP just in case there’s anything else going on…
Sending you a hug, not good to have more symptoms on top of the ES ones you’re already experiencing
1 Like
Thank you @Jules, well this is fun 
. Will try to contact GP in the morning.
1 Like
@Rosie - I found a good article about TOS done by Physiopedia. Check out their suggested symptoms to see if you’re exhibiting any as that will be helpful information when you talk to your GP.
2 Likes
Thank you @Isaiah_40_31 looking at the article TOS is lot more complicated than I realised. Muscles in neck down to clavicle are so tight due to pain I wonder if that maybe the cause of inflamation. Symptoms have been much better today, so think I may leave contacting GP until after appointment with Mr Axon on Friday. Just don’t want to add more complications to the mix. Will read the article again to take it in, thank you 
2 Likes
@Rosie - Neck muscle tightness (probably your SCM) is often related to the spinal accessory nerve being irritated by an elongated styloid on the same side. I had achy pain in both clavicles, in my shoulders & neck which resolved post styloidectomy. Your suggestion that the vascular inflammation could be related to muscle tightness makes sense.
2 Likes
Hi all, I have managed to find what I believe is a 3d which includes my IJV. @TML would you mind taking a look, I believe I have labelled this correctly. If so then my IJV and ECA are tucked between my SP and C1. I can’t look down for any length of time and I certainly cannot tuck my chin without nearly passing out, makes sense right?
1 Like
@Rosie I have a hard time interpreting 3D imaging unless it’s Radientviewer. Is this of your left side? If so it matches the axial slice I annotated a while back, showing your left IJV is compressed against C1
Yes @TML its my left side. Its the best pic I could get which includes what appears to be my IJV. I’m going to query my hyoid with Mr Axon on Fri but he’s a skull based surgeon so don’t know if he will comment on that or not. Thank you
3 Likes
You mislabeled your styloid process in the image you posted:
I’m not sure about the ECA, but I think you labeled it correctly.
Thank you @Isaiah_40_31 yes I agree and I believe the bit I labelled at the end is also my styloid with my ECA wrapped around it. Looking at my other views this seems to tie in with those. Lots to speak about with Mr Axon in my 35 minute appointment tomorrow.
2 Likes
Thinking of you, I don’t think he’ll address the hyoid but hopefully will be helpful about the styloids…
Let us know when you’re able
1 Like
Thank you @Jules I am worried I will be dismissed again, but trying to keep positive and will try to address the styloid ECA/IJV issue that has been mentioned here.
2 Likes
Good evening all, just an update after my private consultation with Mr Axon this afternoon. We discussed all my symptoms and having looked at my scans, Mr Axon believes that my IJV is being compressed by my C1, which would be causing headaches/migraines, ear pain and pulsitile tinnitus. He put pressure on my left IJV which stopped the thumping in my ear. I mentioned the ECA around tip of styloid, he looked at axial again, but didn’t think this would be an issue, only if it was touching ICA. Said styloid was at the longest point of normal but couldn’t confirm if this was causing my pain below ear, neck or jaw/throat and as I don’t get stabbing pain in back of throat or tongue, then it isn’t classic ES, which I do understand. Said that he could do C1 resection and he would also remove styloid ar the same time, but there were no guarantees that would help pain, although he believed resection would help headaches. I asked if I could keep my referral under NHS and we review it again then, so that’s the plan at the moment. Asked if there was any other pain meds I could try, but there’s only the nerve ones and I have already tried those. I do get the feeling that maybe some operations have been done that haven’t relieved symptoms and was told there are no guarantees that styloid removal would definitely help. I am happy with this for the time being.
2 Likes