New member needs help & advice

Hi there fellow Eagles!

My name is Lilian and I have been diagnosed with ES (Right Side) 18 months ago.

For some of you it has been a bit of a long road to diagnosis, (I have read an article in a UK newspaper that it took a man with ES 10 years to be diagnosed, quite extraordinary and unbelievable!

For me it was pretty straight forward, I saw an E N T specialist who performed the necessary tests and subsequently referred me to a head & neck specialist who diagnosed ES.

I find it quite astonishing that there is so little information about ES, (apart from this website which is also written in layman’s terms), I quite expected a fact sheet following my visit to the specialist but there wasn’t one.

Articles on the internet are mainly written by medics in the form of a thesis or research documents and are sometimes hard to decipher.

My symptoms are:

  • My Styloid Process measured 3.1cm, which is just above normal
  • Waking up at night with a very dry mouth, (even though I’m not a snorer)
  • Pain on the Right hand side and sore throat on that side only
  • I also suffer from hot flushes, which I’ve read may be linked to ES ?

I have experienced some degree of discomfort so as yet haven’t decided on a future treatment option.

I would very much appreciate some information about symptoms experienced from other members specifically:

  • Those of you who have had surgery, how was it and was it worth it?
  • My surgeon is proposing doing this surgery intra orally as I also have a stone in my Tonsil which he thinks may also be a problem
  • He proposes to remove the Tonsil first and then shorten the styloid process.

Your help or advice would greatly appreciated.

Regards

Lilian

wow, sounds like your surgeon has some knowledge. His advice sounds solid.

We have many varying symptoms that come with lots of pain in ear, neck, burning tongue,feeling of something sticking in the throat, facial pain. TMJ pain, an actual lump in the tonsil which is the styloid.

My question is: Did he verify that the stone in your tonsil is a stone or is it the styloid itself. Has he done surgery on this before? Are you ready for surgery meaning have you prepared yourself for it.

Surgery is the only real solution to the pain and it can become intense. The surgery has its own problems and does not always bring relief, but most of us get better if we have a good surgeon who knows what he/ she is doing.

So if you can, take time to read through our discussions and get familiar with the different surgeries and symptoms and I hope others will encourage you. My advice is consider surgery definitely, but also consider it carefully so you get the best outcome. If you are not in debilitating pain, take time to choose your options and surgeons wisely.

I had something growing in my tonsil region for 10 years and did not ask about it until it hurt. I, too, was lucky to get a quick diagnosis, but waited 3 more years because I had a more immediate health issue.

Hi Emma,

Many thanks for your reply. Specialist said the stone is in the toncil,so i presume its iternal rather than styloid caused,but you make a very valid point which i will claryfy. I woud preffer initially just to have toncil removed as my styloid is not too long and then see how it goes, i am certanly not going to rush to have surgery.
Regards Lilian
emma said:

wow, sounds like your surgeon has some knowledge. His advice sounds solid.

We have many varying symptoms that come with lots of pain in ear, neck, burning tongue,feeling of something sticking in the throat, facial pain. TMJ pain, an actual lump in the tonsil which is the styloid.

My question is: Did he verify that the stone in your tonsil is a stone or is it the styloid itself. Has he done surgery on this before? Are you ready for surgery meaning have you prepared yourself for it.

Surgery is the only real solution to the pain and it can become intense. The surgery has its own problems and does not always bring relief, but most of us get better if we have a good surgeon who knows what he/ she is doing.

So if you can, take time to read through our discussions and get familiar with the different surgeries and symptoms and I hope others will encourage you. My advice is consider surgery definitely, but also consider it carefully so you get the best outcome. If you are not in debilitating pain, take time to choose your options and surgeons wisely.

I had something growing in my tonsil region for 10 years and did not ask about it until it hurt. I, too, was lucky to get a quick diagnosis, but waited 3 more years because I had a more immediate health issue.

Hi LIlian, are you in the UK? I am in London and there are a few of us who are in your boat here although i'm still trying to get some sort of diagnosis (even though I can feel the bone poking into my throat. I am now in contact and friends with the guy you mentioned, if you are on facebook i can add you and put you in touch with him and a few others in the UK. Carl added me and introduced me to others, its been really helpful to chat to them!

Smithy and Lilian, When you find surgeons or ENT's who can do this surgery, please let us know. The only one that I have recorded is Rorgan or Rogan Corbridge. I would like to find others, so anyone in UK please let us know if you find good surgeons. Thank you.

I just got my cat scan and found out that I have tonsil stones on my left tonsil - a lot of them I think. Mine are not visible on the surface but I think mine are like grains of sand but I know they can be all different sizes. They can cause pain in the ear area. I have elongated styloids bi-laterally but the jury is out (mixed opinions) on if I actually have the right symptoms to call it "Eagles Syndrome". I think it is challenging when you have many things going on: TMJ, Bruxism, Neck injury, and elongated styloid. Where's the pain coming from really?

I wish you the best and I agree, take your time and dive deep into this site and find an experienced doctor.