Feeling a bit nervous about posting on here. Don’t get me wrong, everyone seems wonderful but this journey has been so difficult with wrong turns and confusion. Anyway how do you encapsulate a journey of almost 2 decades. You can’t but briefly I’ve had tmj issues after a surgery performed incorrectly. After that the pain and symptoms just got worse and worse. I was bedridden for a while. Brain stopped working properly. I went from a top student in an Engineering program to barely being able to think. Lots of treatments and surgeries for the tmj. Some issues solved but not all. Sleep become a major issue. Massive headaches. waking up with heart racing and panic. Chest pain. The nights are a nightmare. Started having major postural issues so multiple appointments to the chiropractor every week. Not much in the way of any cure seemed to come forward so I just went into pain management mode. Everyday has been and is such a struggle.
Long story short I finally got a diagnosis for eagles almost 2 years ago. The scan showed it clearly. The one side also seems to be broken into 3 pieces. With each of the 2 lower pieces progressively angling more inwards. Thats the side that is unbearable. The other side is also problematic.
I only have a few hours in the day that I am operational if I have had good sleep. Otherwise I can barely do anything. I am trying now to rebuild my body from years of lack of use and misuse and abuse. I’m doing an exercise program but its quite painful.
Then began the journey of finding a surgeon who can do this surgery. Its been so diffucult. How do you know who to trust? Its such a crtical part of the body.
Spoke to Dr Osborne, he’s ready to operate and said that the way the pieces angle steeply inwards has to be causing severe issues. But the cost is so high that we can’t afford it. I’m a Canadian currently in the Middle East and the insurance here is more likely to cover someone in the UK or Europe.
Any help in finding someone fast would be so greatly appreciated. Prayers for all of you on here.
I’m so sorry that you’ve had so many struggles with your health and for so long! Sadly it’s not that unusual on here
There are doctors in the UK who would do the surgery privately, Mr Axon in Cambridge or Mr Hughes in London. Plus there are some in Germany, Norway, The Netherlands and Italy.
Here’s a link to the doctors list: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
We do also have a list of doctors who have authored research papers in the Doctors Info Section- some may just be researchers & not surgeons, but some detail surgeries, I don’t know if that’s a possibility; there’s a dental clinic in Saudi Arabia but not sure if they teach & do surgery as well, here’s a link to the paper: Elongated styloid syndrome mimicking temporomandibular joint disorders: a case report and short literature review - PubMed (nih.gov)
Otherwise the best doctors to see are ENTs, Skull Base surgeons/ Otolaryngologists, Head & Neck Cancer surgeons, or Head & Neck Neurovascular surgeons, whether there’s any one more local to you that you could approach?
I’m not sure what your insurance covers or how it works, we have had members in the US system who have been able to appeal & go out of their network as they’ve been able to show that there is nobody qualified to do the surgery in their network. Whether there’s any appeal system you could try so that you could see Dr Osborne or one of the other US doctors?
Hoping and praying that you are able to get this sorted
@Nour1sh - Welcome to our forum! I’m also sorry for the years of life you’ve lost due to pain & other awful symptoms. If you do opt to come to the US for ES surgery, Dr. Cognetti in Philadelphia, Pennsylvania, has done ES surgery for a number of our Canadian members. His cash price for Canadians is only $8.5K compared to Dr. Osborne’s $35K. I realize that even $8.5K is significant w/ travel expenses coming from the ME but should you find yourself back in CA anytime soon, he’d be worth contacting. In the meantime, we’ve heard great things about Dr. Aghayev in Turkey, in case you’re close to there. Several of our members have recently had successful surgeries which he’s done.
I hope you’re able to find someone closer to where you are to help you.
Thanks Jules. The Doctor list is excellent. Also you’ve given me an expanded category of doctors to search from. I am trying to get in touch with both Mr Axon and Mr Hughes. It would be easiest in terms of getting there and language etc. So lets see how that goes. The first consult date I was offered with one of them was 2 months away and I was hoping for something sooner as I’m really suffering very badly.
Still trying to work through the insurance and see what is possible.
Thanks Isaiah_40_31 Sorry, its taken me a while to reply as I’ve had some very difficult days. Yeah $8.5K is a lot better than $35K but still a lot for me especially as you said with the travel expenses. Based on your suggestion, I’ve sent a query on Dr. Aghayev’s website so waiting to hear back from them. Hoping and praying that I find a clear path forward.
Can I please ask your advice before I have a referral sent to an ES doctor? I’m the upright Cranial Cervical Junction MRI I believe there is an elongated styloid. I know you can’t give medical advice but I’m advocating for myself and have been for 4 long years. I feel like I’m finally headed towards help. Do you think it would be worth sending my scans to them? Bryan McRae in Utah sees patients for ES but can refer me to an ES surgeon. Please any any advice would be so helpful
First 2 are recent mris, the third one was an mrv showing very low blood flow in my juggular I believe. Also in the same mrv it shows very small left transvers sinus. I can find that picture as well
I’m sorry, I’m not very good at reading MRIs, so I don’t feel I can comment on your scan, but just going on your symptoms it does sound like it’s worth pursuing an ES diagnosis, if you can get a CT done, preferably with contrast, that would show the styloids and be more helpful. Well done advocating for yourself, it’s hard to keep fighting, I hope that you get some answers
Thank you so much for your response, this has been a very rough road. I’ll definitely be pushing for a ct with contrast. i’m praying i’m close to feeling better. I hope you have found relief
I had help on how to convert mri to 3d. This is what i came up with. Doesnt look as obvious as others I’ve seen. But I can definitely see something weird im there.
I’m happy to hear that your surgery was successful thank you so much for the kind words. I am definitely on the right path. Radiologist that did my mris mentioned that I should get a CT as well. I will do with and without contrast just to be safe. I’ve had so many test
When you get your CT referral request that some 3D images are included. If the radiology lab has the ability to do 3D conversions, it will save you time in not doing it yourself later.
