I got a simple email this morning that is going to change my life forever my symptoms started at 19 years old after a tonsillectomy. I am now 39. 20 years of my life with these symptoms. All of the symptoms it feels like. So many doctors, so much testing, so much bloodwork my arms are scarred . So much “everything is normal.” I ended up diagnosing myself through a dental x-ray about a year and a half ago. I will now be 40 in 7 months which is something I have been very vocally displeased about for like 5 years now But now? I can’t WAIT for 40. I made it guys!!! Much to come obviously but right now this email means the beginning of my life.
I would never have found Dr. Liu if it wasn’t for this group. I don’t know how I stumbled upon it - but thank you God, thank you universe for this site and every single person here that commented and supported me. It means literally everything to me.
I will keep everyone posted when I get my surgery date!!!
Just for reference for anyone reading that hasn’t been able to find a doctor to take you seriously - I am having surgery with Dr. James K Liu in Livingston, NJ. He takes insurance and does virtual appointments if needed. He likes to review imaging before inital appointments are scheduled. CTA is best. We are doing one styloid at a time. Will post more info on how things are done at pre op and after surgery.
So very happy for you too! I cannot imagine going through your journey, mine was 10 years nothing compared to yours! Please keep us posted all to often people leave after getting the help they need and the follow ups are helpful to many still securing a resolution. You are in my prayers!
CONGRATULATIONS!! What a great pre-40th birthday present, @Emmaann. I felt confident Dr. Liu would offer to help you. God is good & has answered our prayers for you!
Looking forward to hearing about your surgery date!
That’s brilliant news for you, I can’t imagine suffering symptoms for that long either! Please let us know when you have a date so we can pray for good results
@MGORNEAU thank you so much!! I definitely will keep everyone posted and continue to visit this site and help others. I have actually worked in the medical field since I was 18 but had to stop working numerous times because of my symptoms. Even my own bosses who were doctors couldnt help me. I can’t wait to get back in there and let every doctor, nurse, receptionist ect I come into contact with about ES. I’ve been telling all of my regular specialists as well and NONE of them knew about it. My plan is going back to school (which ES also took from me) and finish for nursing. After all of this, I want to find a way to help people with rare diseases. This and other things need to become more known so people don’t suffer for years over something that can be fixed.
@Isaiah_40_31 thank you!! all the info, the support .. anyone who had or has eagles knows how much that means. And it is the BEST birthday present that I could have ever asked for!!
@Emmaann What an incredible goal to come out of everything you have endured. You will bring something to nursing that cannot be taught in school, the understanding of what it feels like to live with unexplained symptoms and not be heard. What it feels like to live with chronic pain, which you have to experience to truly understand. I have no doubt your experience and determination will help many people with rare and overlooked conditions. I would expect nothing less from a fellow cat lady! I will be praying for you through surgery, recovery, and your return to school!
You will achieve this and future patients will be so lucky to have you on their care team. I hope surgery gives you your life and dreams back. Incredibly happy for you.
my symptoms started at 19 years old after a tonsillectomy. I am now 39. 20 years of my life with these symptoms. All of the symptoms it feels like. So many doctors, so much testing, so much bloodwork my arms are scarred . So much “everything is normal.” I ended up diagnosing myself through a dental x-ray about a year and a half ago. I will now be 40 in 7 months which is something I have been very vocally displeased about for like 5 years now 
But now? I can’t WAIT for 40. I made it guys!!! Much to come obviously but right now this email means the beginning of my life.
Please keep us posted all to often people leave after getting the help they need and the follow ups are helpful to many still securing a resolution. You are in my prayers!
CONGRATULATIONS!! What a great pre-40th birthday present, 
all the info, the support .. anyone who had or has eagles knows how much that means. And it is the BEST birthday present that I could have ever asked for!!
I will be praying for you through surgery, recovery, and your return to school! 
Keep us posted.
