It’s been a long time since I last posted. I was diagnosed with Eagle Syndrome and jugular compression from a CTV back in Feb 2020 by Mr Axon, Cambridge UK. Since then I’ve had a catheter venogram and lumbar puncture to confirm the diagnosis and route forward. So nearly 2 years later I’ve had a surgery date come through for 8 Dec to have a styloidectomy and transversectomy. Excited and scared at the same time but am hopeful for some significant symptom relief at last!
So glad after 2 years you are finally getting the surgery and hopefully get some relief from these horrible symptoms. Sounds like you are in good hands with Dr. Axon as well. After 20+ surgeries in my lifetime, I found the styloidectomy’s to be a walk in the park compared to most of my surgeries. I didn’t have the transversectomy though. I have found that any surgery that involves cutting of bone might produce more pain but it depends on the part of the body and the procedure. Still doesnt stop a person from feeling nervous about getting your neck cut open. I would do pretty good up until the night before surgery on my anxiety. In the am before surgery, I normally was running to the bathroom due to nerves.LOL. Knowing you have a highly competent surgeon can make a huge difference. I liked having surgeries in december…then I could enjoy the holidays and not have to go into work. There is a good side to December surgeries. Good luck M_UK with your surgery!
Thanks for your supportive comments. It sounds like you’ve been through the mill! It’s great to hear from people who’ve been through it and come out the other side.
So pleased for you that you have a surgery date! Has he explained what’s involved with the transversectomy?
Aleabee is having a styloidectomy & C1 resection with Mr Axon in November, maybe you could connect? Here’s a link to her discussion:
First surgery scheduled Mr Axon - General - Living with Eagle
I had surgeries with Mr Axon back in 2015 & 2016, it was easier than I expected & I had great results, but was just straightforward styloidectomies. I hope yours goes well, will make a note of the date & will pray for you
Thank you Jules. The transversectomy is the same as the C1 resection so I expect I’ll be having pretty much the same surgery as Aleabee.
HOORAY! So glad your long wait is over & there is a light at the end of the tunnel for you. I’ll put your surgery date on my calendar so I can be praying for you especially on that day.
I just re-read your profile. You should connect w/ @optimistic. He’s a motorcycle guy, too, & is in your neck of the woods (sort of) - Ireland. He’s been waiting for a surgery date for at least 2 years but hasn’t gotten one yet.
Thank you Isaiah_40_31. Yes the situation for patients like us over here is very difficult. It’s a huge battle to get diagnosed and then the number of doctors willing to treat the condition is very small, hence the massive waiting times (unless you go private). Hopefully my story will show others here in the UK that although it’s difficult at the moment it is possible to get treatment through the NHS.
Thanks Jules. Yes still on at this stage.
Ahh thank you Jules. Yes its still on!
Apparently I’m first on the list so send some good stuff super early please!
Speak soon x
Good luck to you! Will see if I can get a nurse to pass a message on to you.
Thank you so much x
M_UK & Aleabee,
It’s 10 pm in the US now, but you two may be getting ready for surgery already or very soon. I’m excited for you & will be praying for the very best outcome & no complications. Will look forward to hearing from you both when you feel up to it post op.
Will do xx
Thank you so much x
Had the surgery Weds evening. It went well and now recovering at home. Very tired so will share more later. Thanks for prayers/thoughts
Thank you for checking in! So glad your surgery is done & you’re mending. Tired it good. It keeps you down so your body can heal. Will look forward to future updates.
Glad that it went well, thanks for letting us know, take care of yourself, will keep praying