Ready to give up

Imunique, good luck! I saw that you're visiting several doctors - that's good. My main suggestion is to find someone willing to take out as much of the styloid as possible.

1 Like

DeLeone, I think of you often. You are right though that we need to fight till the end and that some of us suffer so much and are not understood, I like your idea of visiting a children's hospitals and seeing them fight. It is important to know that there are others in as bad pain or worse, though at the time we are in it, we can't see very far, especially when it seems to last forever. I am doing well from Eagles, but have been whining about my back. I think I need to stop whining. Thanks.

1 Like

Never Give up!! You will find relief!! I will never forget on my search for help how a Dr. I had seen showed me the cover of his pain management book literally showed our condition!! HELLO?!! This condition is extremely painful and really is not fully understood as well as difficult to diagnose. Everyone is different too since the bone can be elongated at different lengths and angles etc. causing different types of symptoms. Not enough has been done in the area of neurology and really that is where our condition should be under... Neuro-surgeons. However since it is outside the brain, but on the head it is relinquished to the ENT Dr.s. I am thankful for their help and have had 2 surgeries to help with mine. I am much better off in so many ways, but not completely resolved which I just leave in God's hands. Your tunnel will not stay so dark and deep, remember you are NOT ALONE!!!

1 Like

Praying that your appointment at Loyola went well??? Prayers for you on your journey to feel betterā€¦

1 Like

Who was the doctor in Chicago? Did he do your surgery?



imunique724 said:

YOU ALL DONā€™T KNOW THE STRENGHT YOU HAVE GIVEN MEā€¦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) TOMORROWā€¦TO BE CONTINUEDā€¦

Imunique724: I second your thoughts on how helpful this site and members have been. It is so nice to have fellow Eagle friends who understand the pain and sleepless nights. Please post on how your appointment went. I have to go to a doctor in Detroit tomorrow at Henry Ford for a consultation. He is the only one in Michigan I could locate that would even see me. I may need a second opinion and would be interested in your encounter down near Chicago. God bless, and good luck!

1 Like

I am interested in the Chicago doc too. However; Iā€™m pretty interested in Dr. Forrest in Columbus Ohio. 53 surgeries he has done and people seem to like him. Iā€™m from the U.P. so everything is far away! I was very lucky that the first ENT that saw me diagnosed me. He referred me to U of M but their docs donā€™t treat ES. So I guess its up to me to find where to go :frowning:

Ivy: I had the same problem with. U of M. When I was referred there. I will let you know how my appointment goes with this doctor at Henry Ford. He has good credentials, ie. trained at John Hopkins and has an ENT and specialized training in head and neck surgery, more so with cancers probably. He is young though, so I will ask if heā€™s done this surgery before, how many. I too would probably check out. Dr. Forrest because he seems to be one of the more experienced surgeons, but Chicago would be a little closer for me than Ohio. Where are you in the UP? I will keep you posted. Take care!

1 Like

Thanks Kayā€¦I live just west of St Ignaceā€¦not far from the bridge



Kay said:

Ivy: I had the same problem with. U of M. When I was referred there. I will let you know how my appointment goes with this doctor at Henry Ford. He has good credentials, ie. trained at John Hopkins and has an ENT and specialized training in head and neck surgery, more so with cancers probably. He is young though, so I will ask if heā€™s done this surgery before, how many. I too would probably check out. Dr. Forrest because he seems to be one of the more experienced surgeons, but Chicago would be a little closer for me than Ohio. Where are you in the UP? I will keep you posted. Take care!