I think lots of members have had swollen lymph nodes with ES, you could search for that on the site & hopefully that will reassure you?
Hi xAngelx35 -
Is the bump painful if you poke it? Swollen lymph nodes are often tender to the touch. That could be another defining criterion for your bump.
Hi Isaiah, no the bump/lump is not hard or painful. It is soft and noticable. I have been feeling a bit under the weather lately but I am just worried as this is on only on my ES side and my throat/tongue have swelled up in the past and I nearly choked to death. Luckily for me, my dad was there at that time and saved me. So feel a bit panicky when something like this happens :(.
That’s understandable, can you see your GP?
Hi Jules, yeah I got an emergency appointment. The doctor checked my ears and nothing wrong there, even tho I have been having a lot of pain in left ear.
Then checked neck and throat and it feel tender under jaw left side. Then he looked at the lump/bump and has now referred me for an ultrasound to rule anything more serious out. The ultrasound appointment will be in about 2 or 3 weeks. If Mr Axon’s appointment comes first I will ask him to look at it and see what he thinks.
My ES journey started with severe pain in my neck with pain in my ears and its still my most prevalent symptom today. The best way to describe the pain is like the onset of the flu - when you glands swell and it becomes difficult to swallow. Almost one year later and 20 different doctors and test and I am now scheduled for surgery. My surgeon said that the pain in the neck, feeling like the lymph nodes are swollen is one of the main symptoms.
You are your best advocate. Follow through until you get the answers you need…
All the best.
So grateful to hear you are moving forward with a medical eye. I agree about being your own advocate, especially in our medical system today. A pleasant squeaky wheel goes a very long ways. Wishing you the best!
Glad you’re on the road to getting a diagnosis, hope the wait is not too long…
Hi Jules, I was shocked at the speed at how quick my appointment is. My scan is on Wednesday, so only 3 days to wait. Not sure if that is a good or bad sign as I was expecting to wait 3 weeks for an appointment. I have everything crossed.
Will pray for you & hope that it’s nothing to worry about!
Good luck xAngelx35, one step at a time. Sending good energy to you and your medical team
I will be praying that all is well for you, too! So glad you got such a quick appt.!
Just an update. I have had my scan today and I am over the moon that the lump/bump is nothing to worry about :). It was a lymph node on the thyroid. I am just so relieved I am ok apart from the ES. Then the doctor was talking to me about the ES and told me he knew people at the hospital who can help with my ES. WTH? why didn’t anyone tell me I could of seen someone at the local hospital.
So fantastic to hear your good news!
I think there’s a good chance the people at the hospital who “could have” helped you w/ ES would have ended up being “dead end roads”. Our experience here is that there are many doctors who know about ES, but a lot of them feel surgery is worthless & doesn’t really help. It would be interesting for you to get a name & maybe check someone else out while you await your other ES appt. IF you could get an appt that quickly. I know the medical system in GB can require a bit of waiting. It would be great to add to the ES doctor’s list for your country!
That’s great news! Would be interesting to know if there is anyone who would seriously help!
I just thought I’d update. I went to see Mr Axon today about my ES. I have to have a venograph as he wants to check if the styloid is pressing on my jugular. Altho this sounds a bit scary, I feel very confident being under his care. He is an amazing consultant, takes the time to talk about worries or concerns and explains everything. If it is the bone problem, he is more than happy to take it all out.
Glad that you’ve had your appt., another step forward! The venograpgh will be fine, & hopefully will show what it needs to! Best wishes!
HOORAY for progress in the right direction xAngelx35! So glad you’ve had your first appointment & hope your venograph makes everything clear so you & Mr. Axon know the best way to proceed.
So glad to hear you are moving forward. The medication they can give you during the venogram is very helpful for a comfortable experience, wont knock you out but is very relaxing. I am also glad to hear you have great confidence in your doctor, a good rapport goes miles! Wishing you the best
Hi, I was just wondering what is intercranial venous outlet? It was mentioned in a letter I received today from Mr Axon. Is this somehow related to Eagles Syndrome or is it 2 different conditions. I have been having very bad brain fog for a few months now and couldn’t really concentrate on what was said. Does anyone else have this condition as well as ES?