Ear ache

I am still wondering about my very sketchy e.s diagnosis, i just wish it was more black and white. Is is very difficult to make a decision on surgery when your ent consultant shows no enthusiasm towards the surgery despite evidence on a ct scan. It is definitely causing me to second guess the diagnosis. My gp is also very against me having the surgery. I have also have m.e so i am a little worried with regards to after effects of the ga. I really need some advice from you guys, can you take a look at the following symptoms and see if you think it is e.s. My main symptom is ear pain, i also have tinnitus and whooshing noises in my ears, i often feel like i have food stuck in my throat after eating but assumed it was food caught in mucus at the back if my throat. I have pain at the corner of my jaw in the region of what i woukd imagine is a lymph node. I also have a lot of headaches. I am currently taking amitriptyline but still have to take co codamol which makes me very tired. The pain is not constant, i would say that i have dull pain approx 70% of the day with occasional stabbing pain in my ears. I do have pain when turning my head from side to side but if i’m honest i don’t know if this is just muscular pain. Sorry i know this is a long post and i understand that you are not medical proffesionals, i’m sick to death of having pain, my m.e is disruptive enough without anything else.

I have the same symptoms with same diagnosis. It’s not totally unbearable pain but it’s always there.

What is m.e?

Waiting to hear from my doctor on what to do.

Good luck on this journey. Glad we have a support group to ask questions!

Myalgicencephalomyelitis. Its sometimes called chronic fatigue syndrome too. It is a little strange though as the symptoms for both started at the same time,

It is hard when you have more than one condition, as the symptoms can often overlap… all I can say is that the difficulty swallowing, pain in your jaw area, pain turning your head to the side etc. ate very common ES symptoms. The stabbing ear pain sounds like nerve pain, that can be caused by other things, but ES can also cause Geniculate Neuralgia. Alot of members have tinnitus, & sometimes the whooshing sounds, although they can be cuased by other things, same with the headaches.
Some ENTs will do a lidocaine/ steroid injection into the area of the styloids to see if it helps symptoms to confirm the diagnosis, otherwise it’s diagnosed by looking at the CT & symptoms.
It certainly won’t help your ME taking the cocodamol, & also amitriptyline can make you tired too; but while you’re still in pain then you don’t have a choice. I don’t know about having a ga with ME, but I know that alot of doctors are nervous about operating for ES because of the risks- would you be able to see anyone else on the list, or get your scans sent to someone else, as presumably travelling is difficult for you?

Hi jules, i have just been researching the consultant i saw who gave me my ct results, he is actually a ent surgeon, he did say he had done 5 of these surgeries previously too. Your right it really isn’t ideal taking medication that makes me feel more tired. To be honest i have to take high dose co codamol for it to help at all. I am gradually increasing my dose of amitriptyline and am currently on 35mg. It has helped but the pain is still there. The thought of surgery doesn’t scare me, it would just be nice if the consultant could tell me that it is definitely eagle syndrome. It seems wierd to me that he can see the elongation and calcification as well as my symptoms but is still saying that it might not be eagle syndrome. It did sound like he would be happy to do the surgery if thats what i decided. I can’t help but feel that i coukd have this surgery and feel do much better, i don’t really want to be reliant on opioids for the rest of my life especially seens as they only take the edge off the pain.

Hi Steph,
Your symptoms sound very typical of ES symptoms. The wooshing in your ears is likely because one of your arteries is being compressed by an elongated styloid or calcified s-h ligament when your head is in certain positions. The headaches, “something stuck in your throat” feeling, the pain under your jaw, tinnitus & ear pain are all ES symptoms. Having the pain be mostly dull w/ occasional sharpness is also an ES thing.
In the US, there are several surgeons who are willing to do consults by phone. The patient makes an appointment, sends their scans to the office then has a nice chat w/ the doctor without having to travel to the office. There is a fee for this, but it’s very helpful to get an opinion from someone familiar w/ ES & ES surgery. You might be able to get a second opinion from Mr. Axon or one of the other doctors in England that would help you know how to proceed. Unfortunately, surgery to have the styloid(s) & ligament(s) removed is the only sure fire way to do away w/ the pain more permanently.

I am sorry you are suffering. This is a strange ailment to say the least.