So things are moving pretty rapidly right now. Suspected eagles a while back but no one would listen. After such a long time of being told it’s all in my head or I have reflux finally some answers. Although those answers are terrifying at least now I have a diagnosis. The nz healthcare is dire. I have figured this all out on my own. From not being believed, shut down, told its all in my head, my pain isn’t real, I’m over sensitive, misdiagnosed with fnd. Even yesterday at my gp when I told her my diagnosis she said I know eagles and that isn’t what you have. It’s gastro and take some antacids. So I now have 2 opinions. One from Dr Aghayev and one from Jeffrey Allard. I sent my symptoms etc and ct scan to him yesterday and had this when I woke up this morning I have had to fight for such a long time and that makes me sad.
Hi Sarah,
Just reviewed your scan.
Your post-op C-Spine shows no complication or stenosis.
Styloids are densely calcified, discontinuous, angled medially, and slightly elongated (3.5-4 cm bilaterally)
Most importantly, your IJV is compressed 80% betwwen the styloids and C1.
Prominent vertebral collaterals confirm that this is hemodynamically significant, as is the fact your symptoms are worse with head turning.
Cranial nerves 9,10,11 run with the IJV near C1 and impingement of the glossopharyngeal nerve can cause throat pain and dysphagia.
Vagus impingement causes dysautonomia.
Impression- Neurovascular Eagle syndrome at C1.
This is a relatively new entity and only a few neurosurgeons have dealt with this.
We can all relate, everytime I saw a doctor and asked about my eagle’s syndrome I was told it’s rare and likely isn’t the source of my symptoms.. as if being rare has anything to do with the fact we already have the condition, and the docs never offered a more likely cause.. the most they would do is prescribe sleeping meds or anti-anxiety meds, so I gave up on help for 10+ years and figuring I would have a short life, but now finally finding qualified surgeons from this forum. Dr. Aghayev has helped alot here and he’s very compassionate to us. In his eagle’s interview he said most of us end up having to diagnose ourselves because most doctors dismiss it. Crazy world.
Yes I have a video call with Dr Aghayev tonight and then go from there. I’m in the sad, angry, relieved phase hitting me in a wave of emotions. It’s a long journey for a lot of us. I have also had docs try and put me on antidepressants, nerve meds that don’t work and my doctor said lots of people live like you do just carry on.
What a relief to finally have an answer, @Sascampbell! Dr. Allard deserves a medal for his astuteness in reading your imaging & giving you a proper diagnosis vs another rejection or excuse for you not having what your symptoms & imaging clearly show!!
I hope your appt with Dr. Aghayev strongly confirms what Dr. Allard said & provides you with a path forward to regaining your health.
Yes I know right. And he was so quick with his response. It confirms Dr Aghayev findings exactly. So that is a real relief. Will see what Dr Aghayev says. This is all new to me so I’m unsure what my time line looks like with regards to whether it’s something I need to get done reasonably soon or can wait a wee bit. Obviously like many of us funds are an issue.
I’m sorry that you were being fobbed off for so long, and that it sounds like your GP still won’t acknowledge it! But good that it’s now confirmed… I hope that your consultation goes well with Dr Aghayev, will you let us know how it goes please?
I’m so glad you had a good conversation w/ Dr. Aghayev, @Sascampbell! Now to work out funding so you can have the surgery you need. I hope that ends up being easier than anticipated.
Makes you want to cry doesnt it? So many mixed emotions after years of gaslighting and minimization. You got an answer and a clear DX. Thats 75% of the battle. On to the next event - getting surgery scheduled and post op. Good luck on the next leg of your journey.
I wish you all the very best @Sascampbell with your search for the correct surgeon. Getting the diagnosis was definitely the hardest part of my two year journey, which I am now 11 days post op with Mr Axon UK. I am grateful to have been treated in my own country and understand how you must feel having to travel abroad for surgery.
