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Eagle Syndrome - Online Support Group

Whole family needs help


#21

I have been trying to send you some private messages about Cleveland Clinic and ask you questions. They are not going through for some reason. Maybe the message line is not working or I am sending too much. I will try later.


#22

Thank you so much. I truly appreciate it. Blessings to you and yours


#23

I hope your primary care doctor will be willing to learn about ES & willing to give you w/ the lidocaine/cortisone shots. I don’t know if both can be done together. It may be one or the other, but asking is always free.

:hugs: Hugs to you & prayers for you as well.


#24

keepingitreal, My heart just goes out to you and your family…You will find a doctor. ES is rare but, if you do have a diagnosis of Eagle’s Syndrome, that’s half the battle. It took me 17 years before I got a diagnosis. I was on that merry-go-round. The onset for me was on Christmas Eve 1987. I had been baking all day and I just threw a LeMenu Breast of Chicken Florentine in the oven and I took 1 bite and that was the beginning of "Hell on Earth for me! I felt that I had swallowed a tiny bone…and so began my journey for answers. I lived in Houston, TX. and I had just had my second son on Dec. 8th so, guess what kind of diagnosis I got??? Postpartem depression, dysphasia of throat. Nope, I prayed so much and I ended up moving to OKC in 1997.

It was there that I ended up being referred to OU Physicians by get this…my Gynecologist…I always go to Mercy Hospital and none of them would refer me to OU because that is a University/research hospital. They did not want me to go outside of their system. Meanwhile, I was slowly dying. I was desperate! Dr. Carpenter(who just retired July 31st) heard and knew my suffering wrote the referral. An OB/GYN sending me to an Otorhinolaryngologist Clinic! Yah had his hand in it from the gitgo. I moved from Houston to Oklahoma after living in TX. all of my life.

Dr. Krempl diagnosed me in 3 weeks and sent me to another professor/doctor in Norman, OK to do the surgery. A week after I got diagnosed with ES, I had the surgery to have the Styloid Process removed through my mouth. It was the surgery from hell but, Yah blessed me with praying, devil busting friends. It took me about 4 months to recover and I have been healed since 2004. I have an appt. with Dr. Krempl in Jan 2019 to make sure it is okay.

Right now I have teeth problems so, not feeling real good. Extraction of molar this last Friday and I am having some discomfort. One thing I will say to you before I sign off, this Blog has been so helpful and encouraging to me after so many years of giving up hope. Stay with this Blog and move forward. When I was suffering and standing on HIS promises, I felt I was dying and it was a slow death. I was giving up and it was hard but, I pursued my healing.

Just because I had 2 good paying insurances it didn’t mean I was going to find the right physicians. I had to totally surrender to the Great Physician, my Creator. So, inquire of Him to order your steps to find a diagnosis and a good physician. Hang in there. We’ve all been through it.


#25

Thank you so much for sharing your story, love positive endings! I am being so blessed here and will defiantly continue to post. You all are helping immensely from the little things like sharing your stories to some actually calling drs for me, it’s amazing!!! I am one who finds my worth in doing the right thing. I have spent 14 yrs by myself after my second divorce, just raising my kids. I know what it is like not to have parents/family around so I made it a point with the kids dad to keep him involve. I have keep our home safe and secure and not involved alot of ppl in our lives so it would stay that way. I planned all three of my kids (all I wanted to be was a mom), the grandkids are “God’s sense of humor”, I say; as i didn’t plan on raising two of them. I have a wonderful 25 yr old daughter in the school of hard knocks but surviving and due to graduate soon (i hope), I have a awesome 23 yr old son who is in college and works full time and I have a amazing 14 yr old daughter in advanced honor classes and marching band. I got my grandson when he was 18mo old until he was age 7 when dcf reunited him with his father and I got my granddaughter when she was 13mo old, she is now 41/2 and still with us. I grew up raising myself and was completely on my own at 16. I am used to being strong and doing things for my family is also where I find my worth.
When i posted here a couple days ago i was in a lot of pain and just at a loss; to watch my children have these symptoms and not get any answers from drs is more torturous for me then the pain and symptoms I have myself, so i reached out… I want to state again how really overwhelmed I am by the care and concern ppl here are showing. I’ve always felt i have to earn my worth and here i am feeling worth as a person for something that I viewed for so long, as making me worthless (ie…physical pain preventing me from doing things), its hard to comprehend. I am eternally grateful and so hope to help others here in anyway i can also. What a great thing this is!!! Once again with tears streaming, thank you so much to you all!!! God truly does heal in and through us all in so many different ways. Blessings


#26

You are so strong, I’m sure you will get answers, needing to for your family will get you there in the end, I’m sure. Hats off to you, Keepingitreal, you are amazing! :smiling_face_with_three_hearts:


#27

Thank you Jules, you’re great too :wink:


#28

Not in your league…


#29

Hi I am one with es and with 9 kids and most of them has es as well. I was able to get some relief and kids as well through chiropractic care but not all chiropactors will touch you with es I was lucky find one. But I now having more symptoms yesterday I face planted on the floor too. Ultimately the surgery is best for seeking help and getting better. I feel for you. As for the Medicaid we to had Medicaid but went through the Obama health plans got blue cross for me to go out of state seek a specielest in NC. That was in 2014. Since my husband has got INS through his work.


#30

Hi I agree with Jukes a ct with contrast is needed. I too suffered same symptoms doctors dismissed until an eagle eyed, excuse the punn! ent trainee spotted it, now I am finally being taken seriously. Waiting to see maxiofacial to discuss surgery or other options. My ent too felt the bone inside mouth back of the throat and then confirmed ES last Monday. If you need to talk just message me.


#31

Keepingitreal
I’m so happy for you in that you have found this group. It has been truly a lifesaver for me. I have also suffered with ES for 20+ years and finally diagnosed in April of this year. I am still working on finding a competent surgeon to rid me of this evil, but I am confident it will happen sooner rather than later. I hope you are able to push forward now as well with the encouragement and love from all the wonderful people here. They are responsible for keeping me going and keeping that hope that life really can get better! You are a special person and I wish great things for you and your family. Godspeed