Awaiting treatment plan - newly diagnosed

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Hi there - I recently had the results of a head/neck CT scan that I had in December and my GP told me I have ES. I have an appointment with the hospital consultant (ENT) in July so no treatment plan as yet. My GP had never heard of ES and had to google what is was!

My symptoms started just before lockdown (UK based) so around March 2020. I had a feeling of something sticking in my throat but only on the left hand side. My GP thought it may be Globus/GERD and I was prescribed Gaviscon. Symptoms gradually got worse - the feeling of something being lodged in my throat was more apparent, my tongue started to tingle on the left only and my tongue literally felt too large for my mouth. I paid privately to try and get some answers. Had a nasendoscopy which revealed inflamed vocal cords - prescribed more Gaviscon as it was believed I had silent reflux. Paid for a barium swallow which did reveal mild reflux/gastritis and was then prescribed Omeprazole. None of the symptoms reduced and I then started to get a feeling of pressure in my left ear and would sometimes find my balance was affected. My tastebuds were also altered as my tongue just constantly felt like it was burnt. I eventually got my GP to refer me back to ENT as these symptoms are driving me mad. I had another nasendoscopy prior to the CT and the consultant mentioned that my left lingual tonsil (I had my tonsils removed over 20 years ago) was large and it may be that I could feel as if something is stuck in my throat however he also mentioned as I’d had a tonsillectomy I may have a calcified ligament so he ordered a CT scan. Had that in December and was told last month that it was ES. I’m glad I now have a diagnosis however I still have to wait until July to find out what course of treatment I’ll have.

I’m in limbo at the moment. I obviously now know these symptoms won’t go and presumably will progress as they have done over the last 3 years. I will have to wait and see what the consultant suggests but reading through the forum it looks like surgery is likely the way to go to alleviate the symptoms sadly.

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Hi Welshy & welcome!
Some nerve pain medications could potentially help with the feeling of something stuck in your throat, & the burning tongue- there’s info in the Newbies Guide Section about pain relief. Also an injection of lignocaine & steroids into the tonsillar area can be done which has helped some members, although this would need to be done by an ENT & often under ultrasound, so I’m guessing you’d have a wait for that too, if your ENT does that.
It sounds like you might have vascular ES with the pressure in your ear & balance issues, sleeping semi-upright can help with that (although this could be irritation of the vestibulocochlear nerve, the 8th cranial nerve, also).
But surgery is the only ‘cure’, yes. I hope your consultant is helpful when you see him in July!

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Hi Jules - thanks for the reply and the information. I will hopefully know more in July. I haven’t seen a picture of my CT scan so no idea as to the severity as my GP didn’t know anything about the condition and wasn’t particularly helpful! I noted quite a few members have posted their CT scan pictures so I’ll ask for copies when I see my consultant in July - it’ll be interesting to see :blush:. In the meantime I’ll keep reading up on it.

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Hi @Welshy59 - A second welcome to you! I’m sorry you’ve been diagnosed w/ ES but am glad you finally have an answer to the cause of your symptoms.

Just want to let you know that CT scans are done in slices & the images you see here are mostly 3D renderings of the slices. Some radiology labs include a few 3D images w/ the slices whereas others do not. When you get your CT images on a disc, if there are no 3D images, there is free software online that you can use to produce some 3D images to help you (& us if you post any pics here) better understand your situation. You can also try asking the radiology lab where the CT was done if they’d be willing to create a few 3D images that show your styloids & stylohyoid ligaments from styloid to hyoid bone.

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