Suspect ES and start finding a solution

General
1

Hello All,

I live in Melbourne and am very grateful to Jules for allowing me to be part of this family. I think it goes without saying that I stumbled upon this forum simply checking for my symptoms on Google and repeatedly kept on bringing this forum up. That is awesome since you all are definitely creating the much needed content around this subject that even Google finds it important enough to list in the top searches. Well done!

As for me, I have still not been clinically diagnosed to have ES but the symptoms are to obvious to ignore. I recently felt like I was coming down with common cold and check my own tonsils for inflammation before heading off to the GP for medication (why waste time when they will simply look at those things and prescribe panadal). Anyway, while i did that, I stumbled upon a very strange protrusion right from top of the skull (not sure what the actual name is) and it was clearly resting againt my right tonsil but behind it. This means, no GP could have seen it visually.

This was very puzzling and I started Googling and needless to say, Google was quick to give me information that I had “Throad Cancer”. I conveniently pushed that aside and decided to look deeper. That is when I say a strange phrase “Eagle Syndrome”. I started reading about it and tried to draw parallels around the symptoms I am experiencing. Perhaps you guys can help me with my suspicion:

  1. Have a clear lump like protrusion coming right from the top of the skull and nested behind the right tonsil causing it to stay inflammed.
  2. Have tender spot pretty much where you would do external surgery for ES.
  3. This is causing me to have a stiff neck only on the side of the potential ES side.
  4. Accompanied with facial throbbing on the right side and tension headaches on the right side.
  5. Shoulder muscles to the collar bone seem very stiff on the right side.
  6. Now experiencing a bit of swallowing issues but only at the throat…there place where you feel a lump when you are anxious.
  7. Tongue feels tired on the right side and need to massage from the bottom every now and then.
  8. dizziness and lack of concentration such that I thought I could be experiencing some sort of a stroke.

So, what have I done so far, I have visited my GP and told him to simply touch the lump behind my tonsil. Immediately referred me to a ENT and I chose Roy Nicholson (who is also a surgeon listed here). However, he is not responding and will be off till Friday which means I can try again next week. In the meantime, I am simply going to another GP for referral to a another ENT who can at least start doing some tests if needed. I think that very clear indication of a lump should not let him second guess since that itself should be a concern. I think, as they would do their tests, they are probably going to find ES. Again, just my assumption that it is ES as I will have to wait for a proper clinical diagnosis. Then, it is a matter of pain management (since I expect the pain to get a lot worse) and waiting for surgery. I do not have private insurance and so will have to wait for my turn via public if I can bear the pain.

I am a married man with three lovely children. They really look up to me and do not want to show them how vulnerable their hero can be. So really need all the prayers to get through this asap.

Cheers

Lamda

2

It’s good to know that the info about ES is getting out there, personally I think that ES is actually a lot more common than the figures suggest, it’s just it’s misdiagnosed!
I’ll certainly pray for you that you see the right doctor, & that you don’t have to wait too long for diagnosis/ treatment. Lots of info in the Newbies Guide section about pain relief & other treatment options- some members have had steroid/ lidocaine injections into the tonsil area which has helped them keep going until surgery. & it doesn’t always get worse- sometimes it can stay at a tolerable level for quite a while; some members opt not for surgery because there are some risks & they feel it’s not bad enough to take those risks. It’s a different decision for everyone.
If you do get a diagnosis, there could always be a skull base surgeon/ otolaryngologist near you who would do the surgery?

3

Hi @lamdacore

What I found useful is a panoramic X-ray that many dentists do here quite often. If you have been recently to one of them, you can just ask them for a copy of the OPG and if there are elongated styloids, they may be seen on it.

If you have elongated styloids, the Xray might look like this: http://medind.nic.in/jay/t15/i3/JIndianSocPeriodontol_2015_19_3_336_152107_f1.jpg
You can see the elongated styloids like thin slightly wavy bones from the skull base pointing towards the jaw. On the right side in the xray it goes from the middle of the ruler towards the jaw.

A “normal” (just in my opinion, as I am not a doctor anyway) one here: https://www.nidaandental.com/wp-content/uploads/2017/05/OPG-3.jpg

Certainly, every case is different and even if you have elongated styloids, they might or might not be clearly visible in OPG, or look differently in thickness, length, shape or angle than the ones in the OPG above.

vdm

4

A CT scan really does show them much more clearly but a panoramic X-ray is better than nothing!