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Thursday, 15 November 2012

Diagnosed at last!

EAGLE SYNDROME
Trying to make light of this, although it's not funny in the slightest, I was slightest amused about the title of my condition!!!

I have had a painful left ear and throat for many months now. It's been so long, I can remember when it first started. I have had anti-biotics from the GP for suspected ear infection several times. I have seen consultants at the hospital and had an ultrasound scan, MRI Scan and X-ray. The X-ray was the last procedure I had and I received a letter saying that I would be sent an appointment in due course to discuss the results of the x-ray. Alot of weeks went by and I didn't receive the letter. The pain has increased over the last few weeks and was starting to worry me.  I phoned and nagged the ENT Clinic (Ear, Nose & Throat) and eventually got an appointment for this morning at 9am.

I sat in the waiting area at the clinic and was called in to see a different consultant. Well he wasn't a consultant, he introduced himself as a 'Speciality Doctor' working for the Consultant. This doctor was Portuguese and was well, simply brilliant. Within 2 minutes of me sitting in the chair and him carrying out an assessment (which was painful) he had diagnosed me! Now why didn't other consultants pick up on this, after all these months!!! To be fair I suppose, the condition I have, is very difficult to diagnose. The doctor told me that although he was working under a consultant here at the QEH, he was actually a Head and Neck Consultant in Portugal. I have a rare condition called 'Eagle Syndrome' (The condition was first described by Watt Weems Eagle in 1937). It is is so complicated to explain. I haven't really got my head round this yet myself. Currently googling information. But basically it is an elongated styloid process which is behind my left tonsil. "A group of symptoms caused by calcification of the stylohyoid ligament and an abnormally long styloid process. The styloid process is a bone at the base of the skull which is attached to muscles and ligaments connected to the throat and tongue. If this bone is too long then actions such as swallowing and turning the head can cause pain and discomfort" The doctor sent me for a pre-assessment with a nurse as I will have to have an operation, involving removing my left tonsil and the styloid and 10 days off work to recover. I was told it could be done in day surgery, but after finding out I have no one to take me to hospital and back and stay with me for 24 hours at least, they decided to change me to an in-patient. I was also prescribed Amitriptyline, which I collected from the pharmacy, but am not going to take until I found out more, as this is a serious drug. Not looking forward to this operation at all!

This is all scary stuff, especially as I expected my 9am appointment to be over within minutes after telling me that they hadn't found anything on the scans etc. I didn't get back to the ward to carry on with work until 11am! I felt very emotionally drained with this unexpected rollercoaster of information, procedures and operation information etc.
 
INFORMATION FOUND SO FAR:
http://en.wikipedia.org/wiki/Eagle_syndrome
http://www.wisegeek.com/what-is-eagle-syndrome.htm
http://www.livingwitheagle.org/
http://www.ispub.com/journal/the-internet-journal-of-otorhinolaryngology/volume-9-number-2/eagle-s-syndrome-a-rare-presentation-with-bilateral-otalgia-and-review-of-literature.html#sthash.kysZpB4a.dpbs
I wish I hadn't watched this: http://www.youtube.com/watch?v=czO8PFCdkWk made me feel physically sick!
http://www.experienceproject.com/stories/Have-Eagles-Syndrome/1350842

2 comments:

  1. I wish you all the best with the treatment Penny. It is good to know that the doctors now have it diagnosed and that there will be a good outcome in the end.

    ReplyDelete