I am ready to give up. I just don’t care anymore. I am tired of the “i have no answer for you” or “no it’s this, not this” from EVERY doctor I have seen. NOT ONE can validate what another says. I feel alone, depressed and tired. I may not have a job when I get back to work. Because it is a very small famiy owned business, there is no HR to protect my rights, no company policy to explain my rights (they make it up as they go along), and no union to protect me. I am all alone in this and tired of fighting this that way. I have seen how they have fired people when they are on disablity and they have already found a “temp” to fill my position. So, here I am…afraid, alone and ready to give up…I have nothing left to fight for.
You're not alone- we're all behind you, and we all know what you're going through with the doctors. I don't know anything about employment rights so can't help with that one- I'm guessing you're in the US? I can pray for you though, and send you a big cyberspace hug,
Don’t give up, you are def not alone! I see that we live within 20 miles of one another. Send me a friend request if you want info on docs or just want someone to chat with!
Please don't give up. I see that you have looked at Mayo with no results, but try Sacred Heart in Eau Claire Wisconsin. Look up online Dr. Robert J DeFatta MD, PhD, FACS from Sacred Heart. He has experience with ES. I will be making an appt with him as soon as I figure out if insurance covers there for me.
~~ So sorry you're down. I've been there, way too many times recently. You'd think we'd somehow get used to being brushed off, get calloused to it.
Yet every time I go to a new doctor I get my hopes up. I of course lie to myself and say I won't, but I do.
I'm sending hugs too, please don't give up. Regarding work .... whatever you do, don't quit. That would be giving away all of your rights. If they wrongly let you go you can always hire an attorney and sue. I know that is not a cheery thought, but it's the worse case scenario. Many lawyers will work on a commission basis, so you'd have no cash out up front.
Thinking of you,
NEVER give up!!!! So long as you are alive there is always hope. My experience with ES is that you have to just find a doctor who will agree to take out the offending styloid(s). Just find one...it seems most doctors are reluctant to call this ES, but if you do the surgery and get relief, WHO CARES WHAT THEY SAY! It is hard to be your advocate when you live in pain. Do you have anyone to advocate for you and join you for your doctor appointments? Friend, relative, spouse...anyone!!!
I know how you feel and I went over 20 years with my symptoms. You can't give up though you are the only one who can manage your care and find the right doc to figure it out. I felt the same and you do get down but keep fighting and going after it. You can do it!
The company you work for does not help though and I went through a couple of companies when I was having a lot of pain.
Keep going and you will figure it out.
I know its difficult, many of us myself included lost promising careers because of this. But you can't give up, if you do, the arrogant doctors, bosses, whatever win. We are all in this battle together and we are here for you, believe me I know what you are going through, and its not right. I think all of us need to do something as a group. I don't know what but we need a plan, fragmented like this we are just one tiny voice each in a doctors office to be stomped on and dismissed. Together we can be one angry mob to be reckoned with. We are former attorneys, police officers, many solid citizens who are getting a raw deal, and it has to stop, now.
Have you looked at the doctor's list they keep on this site? Also, post where you are and people will recommend someone near you. I know I was ready to give up, also, and now I feel great and normal!
I also, forgot to mention mine was diagnosed by a TMJ specialist /Dentist with just a panoramic x-ray. He of course didn't know where to tell me to go so I googled doctors to deal with and made an 8 hour drive to see the doc. Most that I have contacted have it arranged for you to send your cat scan and schedule the surgery. Then you show and meet and the next day operate.
I gave up for 20 years it was the biggest mistake I have made for my own sanity take a deep breath and keep going!
I AM SO HUMBLED BY ALL THE SUPPORT THAT I HAVE GOTTEN FROM YOU ALL! KNOWING THAT YOU ALL ARE JUST A POST AWAY GIVES ME THE STRENGHT THAT I DIDN’T THINK I HAD. I AM HONORED TO BE SUPPORTED AND CARED ABOUT YOU ALL!! THANK YOU IS JUST NOT A STRONG ENOUGH WORD FOR WHAT I AM FEELING AT THIS MOMENT… I WAS LITERALLY BROUGHT TO TEARS BY YOUR COURAGE AND THE CAREING THAT WE ALL HAVE FOR EACH OTHER…
This is a disease the doctors do not understand and I believe they are intimidated by it. There are few doctors available who can perform the surgery and even they do not understand after I was finally diagnosed I had 2 prominent surgeons say yes you have Eagles but I don’t think that’s causing your problems! I convinced one of them to try possibly by my sheer desperation and the tears I shed. He later told my husband he was never so happy to be proven wrong. I am 7 months post op and still have days that the nerves act up and I feel a desperation that my problem has not been solved. I felt instantly better after surgery the fullness in my ear disappeared and all of a sudden I for the first time could breath thru my nose there were many other symptoms such as extreme fatigue and more than I could mention. When I went to my post op appt the doctor said he could tell just by looking at me that it worked the stress and tortured look was gone from my face. I would not have had the courage without the help of the members of this site! In fact a few days ago I began to have some symptoms reappear but was comforted by the fact that it can take a year or so for the nerves to heal completely. The symptoms have since receded but even when they are acting up it is no more than 40% of what they were previously I think it just becomes a fear when it feels like it is coming back because you know you would never want to “live” that way again! Please take are and do not give up for a minute fight cajole cry whatever it takes! Come here for support and know there is an end to the suffering.
DO NOT GIVE UP PLEASE it is difficult but you need to keep trying, YOU ARE NOT ALONE. I had the surgery in May and my neck pain disappeared, my frequent headaches also reduced a lot, but I have ear pain sometimes and I never had it before the surgery. I know its difficult I am myself off sick for nearly 5 weeks now. you need to be strong. xxx
I also talked with a doctors office in Cleveland. I think associated with the Cleveland Clinic. I ended up going to New York but Ohio was an option.
Please do not give up. I was six years before I was diagnosed with Eagle's Syndrome. I had seen so many ENT Specialists who said I had nothing the matter with me than I started to believe it was all in my head. I finally began calling ENT clinics and asking if any Specialist in that clinic had dealt with Eagle's Syndrome and I found one who did. I flew to his location and to make a long story short I had a complete left styloidectomy. You have to reach deep inside yourself and find the strength to keep going, I know how hard that is when you are in constant pain, a pain that consumes your life, but I know you can do it. The members on this site have all had similar experiences so lean on us. God Bless you.
There are so many wonderful people on this site. We watched my son go from being a straight A student who everyone loved to one who was completely debilitated and in bed in pain every day for years on end. We finally made the decision after seeing this site to have someone remove his styloid even though we had no support from doctors that he had ES. He felt better the day after the surgery and he said he knew he was sitting on a gold mine. He had peace and was happy for many weeks. Now it is 2 months later and some symptoms have recurred, but not as bad. He also has an elongated calcified styloid on the other side. We wrestle every day whether or not to do the other side, but knowing that there can be peace again keeps us going. We may move forward with that and then let his little body heal...if my son can do it, so can you! Don't share all your symptoms as the doctors do not understand. Just find someone with experience who will take it out for you and go from there. I pray that you and everyone else on this site finds peace to enjoy life again.
Thank you dkel9307. Once you taste peace (and know it can happen again), it motivates you to move forward, wherever that leads us. This did happen one other time in Sept. and he got sick, so it is possible that he may be getting sick again. Perhaps I will start a new thread and see if this happens to others post surgery when the immune system is challenged.
Thanks Ear Mom
Best wishes with all your son and you do, and I really hope the symptoms that have reappeared ho permanently into remission.
It might sound bad but watch a couple videos of children dieing from Cancer it’s so sad they do not give up .Ive been thinking of visiting children’s hospitals this Syndrome has made me cold withdrawn hate to say it but selfish I’m sick but it’s not my family or friends fault they don’t understand or can relate it’s made me very self destructive .I feel like it’s God pinching me like I don’t deserve to feel good ,Why us is a good question that will always haunt you sounds negative but I look at worse situation to feel better I’m 13 years in 24/7 bad days and worse days .But you were still chosen to live so show yourself your the strongest person on the Planet!!We all need help bad
YOU ALL DON’T KNOW THE STRENGHT YOU HAVE GIVEN ME…YOUR SUPPORT AND SHARING YOUR STORIES ARE SO INSPERATIONAL!!! THANK YOU SO SO VERY MUCH FOR GOING THROUGH THIS WITH ME AND HELPING ME UNDERSTAND WHAT IS GOING ON AND HOW TO HELP MYSELF!!! I AM SEEING A DOCTOR AT LOYOLA MEDICAL CENTER (IN THE SUBURBS OF CHICAGO) TOMORROW…TO BE CONTINUED…