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@sann @jchristophersen @clara01 @linda21 @lioness @mommyg33 @jealink @keetee @abby4paige @debdeb12 @de9g @theeaglehasland @alcorreia0123 @empy @brooklyngirl @melb777
I want to thank you all for coming to the this site and sharing all your heartfelt stories.
I have had a busy last few months with my move and work. so I have not had a chance to comment.
I started this feed for Son, and others who was diagnosed with Eagle's Syndrome. I love the fact that so many of you are all helping each other. Your stories are all truly heart wrenching. There is nothing worse than being in pain and Dr's not certain as to what the cause or how to treat you. I feel it is scary to just have them guessing or looking at us like we are crazy. That is exactly how my Son felt for 10 yrs till he was diagnosed.
My son has not gone through any treatments. He has done every natural treatment he can find. Because the few Dr's he saw scared him off of surgery. Told him to hold off as long as he can.
Now what he has done may not work for everyone. So you will still need to consult with your DR's. He has gone on a complete health food eating kick. Limiting any milk products and meats from his diet. He keeps himself very slim. He even started practicing yoga. He feels when he gains weight, he notices this aggravates his eagles syndrome. I know he needs another CT scan to check on the Styloids , and compare to his last set. He has not done that yet, Hoping he does that soon! This way I can give you all an update.
I saw some of you posted a couple of other support groups. https://www.livingwitheagle.org/c/bens-friends and https://www.livingwitheagle.org/. I believe they are both linked together.There is a link on that site to a list of Dr's that people have gone too.
I honestly do hope, you all see at least a few Dr's, to get some good second and third opinions on treatments, My Son saw 3 Dr's. One being at Cleveland Clinic which has been a few years ago now. Cleveland Clinic, at the time did not have a Dr on staff that treated Eagles Syndrome.
I noticed a post by someone, that they now do offer treatment. That is wonderful to know thank you so much for sharing.
My Son saw a Dr. at UF Health Stands Medical in Gainsville and another Dr in Dayton Ohio.
I am praying you all feel some relief soon.
Blessing you all.
Jackie
Replies to "@sann @jchristophersen @clara01 @linda21 @lioness @mommyg33 @jealink @keetee @abby4paige @debdeb12 @de9g @theeaglehasland @alcorreia0123 @empy @brooklyngirl @melb777..."
I can appreciate all that you have said, but...
I have had stomach issues for too many years and I have learned that a good diet, exercise, plenty of sleep and an otherwise healthy lifestyle helped. All of that did not help the constant poking throat pain, the burning tongue pain, choking on food, difficulty swallowing, etc until I had the styloid removed. (I did not attribute my stomach issues to ES, though some say it might have been.) I am 9 weeks post op and dealing with scar tissue pain but I am glad that the left side is free. I still have the issues on the right and I will want the surgery to take care of this. The remaining styloid is 5.5 cm and literally feels like a stick in my throat that doesn't belong causing all of the issues I've mentioned. How did it get to be 5.5 cms and is it still growing? If it is still growing then more issues can ensue, in which case I would want it out sooner then later. The only way to get rid of the symptoms is to have it removed.
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Strangely, I agree with your son. Though still undiagnosed after 20 years I have more balance issues when I gain 10lbs so I try to keep down and keep salt intake low. Why no diagnosis you ask, have had more than six diagnoses in past 3 years, but each one taken back. Seems like ligament calcification ES, but doctor said there is no test for ligament. I'm not giving up. Waiting for an ES specialist to accept me as a patient..