Hi to all

Hi all

I have been diagnosed with bi lateral elongated styloids, eagle syndrome.

I’ll upload a pic of my opg.

I’ve had an MRI on my brain and sinuses. I have a CT scan next Saturday on sinuses and neck.

It’s been a rough 3 years. Too much to write.

Neck pain, heart palpitations, suspected bloodclots, a&e visits, bloods all clear, vertigo, vision loss, dizziness, weird pains under my armpits and feet and overall weirdness. Doctors said it was anxiety NOPE!! NEVER HAD IT! Tried to prescribe me anti depressants NOPE!! NOT HAVING THEM!

I had a wisdom tooth removed upper right 2014. All my teeth shifted to the right by two teeth. I went to see the orthodontist and she missed the styloids. She removed two healthy teeth and put me in a metal brace then Invisalign and basically made me a whole lot worse.

I’m in complaints with the GDC and the Dr who missed the eagles.

I am now under Mr Gary Cousins who I paid to see privately. He spotted it straight away. Now under his instructions. He thinks it’s vascular eagles and they need to remove them.

Would be happy to answer any questions.

:folded_hands:

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Hi @theFury & welcome to the site! I’ve enabled you to post images now, so you should be able to upload them.

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Welcome! Hoping this is the beginning of your healing journey! I was also told it was “all in my head” as well. (however in the literal sense of Eagles that is correct :sweat_smile: but that doctor meant anxiety).

I am sure other members will have more knowledge that me on this, but wow your styloids look so long in the pano you attached!

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I know. I was starting to think I was having some sort of mental breakdown. I pride myself on how I control my mind but this blew me out of the water. I feel for everyone who has eagles. It’s debilitating! Life changing.

Yes my styloids, left, is nearly touching my Adams apple :face_with_peeking_eye:.

How do you find yours? What’s your story? :folded_hands:

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@theFury - Your left styloid is crazy long! On your right side it’s more your stylohyoid ligament which has calcified. Unbelievable that the orthodontist didn’t notice your styloids but perhaps she didn’t remember the 30 seconds of discussion about ES she heard in dental/medical school. This is definitely a syndrome that needs more attention during medical education!

I’ll be very interested to see your CT imaging once you have it. Be sure to get a disc to take with you before you leave the radiology clinic unless they’ll send you a soft copy. Some places will, & others won’t. If you have suspected vascular compression, it would be best to get your image done with contrast & dynamically i.e. w/ your head turned L/R & looking up/down. If it wasn’t ordered that way, it will probably be done w/ your head in neutral which may also show compression but not the worst of it.

We don’t have Mr. Cousins on our Doctors List for GB so it’s good to learn of another doctor who is familiar with ES. Does he do surgery or just diagnose ES? If you have IJV compression, you may want to also consult with Mr. Axon as he is the most experienced in the UK in doing styloidectomies w/ IJV decompression.

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https://www.circlehealthgroup.co.uk/consultants/gary-craig-smith-cousin

Mr Gary Cousin is a Consultant Oral and Maxillofacial Surgeon based in Blackburn, Lancashire, United Kingdom. He is affiliated with The Beardwood Hospital and has over 30 years of experience in the field.

  • Qualifications: He initially qualified as a dentist and later as a doctor, completing postgraduate training in Glasgow, London, and the North West of England. He holds an MBChB (Bachelor of Medicine and Bachelor of Surgery) from the University of Glasgow (1993).

  • Clinical Expertise: His practice focuses on wisdom tooth removal, facial trauma, facial deformity management, temporomandibular joint (TMJ) disorders, oral soft tissue disorders, salivary gland problems, and dental implantology.

  • Academic Contributions: Since 2001, he has served as a consultant and held honorary academic positions at three universities. He has published numerous scientific papers, delivered global lectures, and managed the postgraduate training scheme for hospital dentists in East Lancashire for over a decade.

  • Patient Care: Known for his empathetic approach and excellent clinical demeanor, he welcomes referrals from dentists, GPs, and specialists.

Hi.

As soon as he seen it from the opg he took he said eagles. The actual opg I shared was Dr Vinita Singh’s the orthodontist. She has failed me miserablely and taken £9000 from me in fixed braces and Invisalign. I am in a complaints with the General Dental Council and they are investigating her for ‘fit for practice’. All this could have been sorted years ago. But she removed two healthy teeth and after repeatedly telling how I was in distress carried on with the treatment. :nauseated_face::face_with_symbols_on_mouth:

I am having a CT scan of my sinuses and neck next Saturday evening and then on Wednesday I am seeing Mr cousins. He is a glorious guy. Patient, kind attentive a true gent.

I’m not sure what will happen but my symptoms are getting worse and all my teeth are moving back as I’ve had to stop the Invisalign due to aggravating eagles.

What should I ask him when I see him? :folded_hands:

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@Jules (moderator for this forum) wrote this post about ES surgery. Under the " Which doctors are the best to perform surgery? heading there are 11 questions we recommend asking any doctor you interview. The answers you receive will help you know how qualified a given doctor is to do your ES surgery.

You could add a question 12 - Have you done any surgeries where IJV decompression was necessary? If so, what was your approach to decompressing the vein? What do you do if the transverse process of the C1 vertebra is contributing to compression?

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Thank you. It may be that he isn’t able to do it? I will ask him on the 25/2. If not I can’t carry on and I will go and see Mr Axon.

What is a rough guide price for removing the styloids? Preferably cervical not intra? :folded_hands:

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I can’t answer that for the UK. In the US the range for styloidectomies only is from ~$10K - $40K USD. The lowest we know of for styloidectomy + IJV decompression w/ C1 shave is $36K but that was last year. Prices may have gone up.

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Wow. :face_with_peeking_eye: I will have to sell my silver and gold. :pensive_face:

You mentioned my left styloid….how big do you think it is?

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I’m bad at guessing styloid lengths. Both sides have lengthy calcifications that go below your jawbone so 5-6 cm, maybe more? It’ll help to see the CT imaging.

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Wow, your styloids are impressive! I can’t believe the orthodontist missed those!
I hope that Mr Cousins will help you, either privately or if he does NHS work too on the NHS. Mr Axon does some surgeries on the NHS as well as privately, he has a really long waiting list though…what a pain wasting all that money on orthodontic treatment, that would’ve paid for one surgery! I’m not sure of the exact cost privately…

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I wish they weren’t impressive. :face_with_peeking_eye::pensive_face:

I am going after the orthodontist full bore even if it costs me to take her to civil court. They way she dismissed my distress on numerous occasions even though I told her how much pain I was in. :face_with_symbols_on_mouth:

I’m hoping Mr Cousins can sort me and fast. :folded_hands:

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I hope Mr. Cousins is a great help for you, @theFury & justice is done regarding the insensitive orthodontist!!

Can you believe that my dentist didn’t even see eagles? They referred me to Vinita Singh she missed it and sent me back to my dentist and they missed it again and removed two healthy teeth :face_with_symbols_on_mouth:

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@theFury - Sadly, we’ve had a number of members who’ve had the same sort of experience as you had. It’s a travesty as far as we’re concerned, & I’m sorry that you are among those who suffered that plight.

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Thank you. Didn’t even think. :pensive_face:

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Hey @theFury,
I’m Merl from the modsupport team. Both @Jules and @Isaiah_40_31 do such an excellent job I don’t usually make any comments, just come through and read the posts, but when I saw your OPG and post, I had to share some of my knowledge/experiences.

Yes, I can. Both dentists and orthodontists primarily focus on teeth and your OPG shows dental issues on both your upper and lower jaw. That’s their focus point.

In my former life (before my own health went sideways) I ran an accommodation program. I had a wheelchair bound man living in one house, he had a lot of health issues, some alcohol related. Because he was known by the medical fraternity, many of his concerns were minimised as ‘alcohol related’. One day he was in agony, holding his jaw. His tongue, to me, seemed swollen, so I called a Dr. They minimised it all again, but his symptoms were not normal.

The following day I took him to the big city hospital, they took x-rays, turns out both of his lower wisdom teeth were growing sideways, compressing all of his teeth from both sides. No wonder he was in agony. The medicos had already made a judgement, alcohol, ‘He’s just an alcoholic…’ and sure he had a drinking problem, but this was beyond alcohol. I can see that same sideways wisdom tooth issue in your scans. Now, the wisdom tooth on your scan, on my right, has no molar present, so the pressure on that side would probably be less. But on the left, that wisdom tooth looks fairly close to those roots.

Many, many moons ago (when I was a child) I had a top jaw similar to yours, with that one tooth growing almost out of the side of my gum. The dentist sent me to an orthodontist and braces were recommended. But to pull that tooth back into alignment they had to extract the good tooth behind it. Looking back now I think the orthodontist could see $$$$, but it was agreed to proceed. I had braces for 4 years, but my pain/symptoms continued. It was all minimised.

Add 10yrs and numerous medico opinions, I’m driving down the highway one day and the lights went out, I couldn’t see. This incident f.i.n.a.l.l.y. made the medico investigate a bit more and they found a cause, a little nasty growing right in the centre of my brain. And the medicos turned around and said (and I quote) “Why didn’t you speak up sooner…?” I wanted to scream. I had spoken up, but nobody was listening. They had been very quick to have a guess or make ‘pseudo’ diagnosis based on their own judgements. For those of us with rare conditions, this is actually much more common than the medicos like to admit. Sometimes the easiest answer is the quickest answer, even if it is wrong.

So, ‘Can I believe…?’, Ohh yes, I certainly can.

Merl from the Modsupport Team

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