Success Stories

Sometimes it's hard to find Success Stories, Positive Discussions or groups that are uplifting on the site. We want to make it easier for you to find them....

So if you leave a link to a positive Success Story or a Blog Discussion post on the site in the comments below, we’ll move it into the main body of this post for easy access for everyone!

Thanks Scott. We all need a little bit of positive feedback especially when we are struggling and trying to understand what is happening to us even if we thought we did the right decision. I hope we can get some good responses here.

With Kind Regards,


well said viper :)

Really? No positive feedback its a little discouraging. I think this is where we need the doctors list for the new members for help and diagnosis. I think that is positive info :slight_smile:

H everyone, I think that there are many success stories in other discussions on this forum, just not mentioned here. So for those of you still struggling specifically with eagles, I will say that I believe my left styloidectomy was a success. I am about 10 months past surgery and I feel pretty good most times. I found a few months after surgery that the removal of the styloid caused a change in my normal bite. I needed to have my night guard which I used for clenching adjusted and now I feel pretty good all the time. So once you have the styloid removed, you may need to have some dental, TMJ things checked out even if you had that done prior to having Eagles.

Mom4 The doctor spread sheet is mentioned in discussion " Latest update version Sept 18th" Since then about 3 more doctors have been recommended and I will update the spreadsheet later in January, I am sort of on a vacation right now.

I wish everyone on this site a great holiday season. We are happy to know of more doctors who do understand our issues and we hope to find and educate more in the future. We owe a great deal of thanks to Dr. Cognetti, Dr Samji, Dr Forrest, Dr Alemar and several others who are taking time to help us.

Thanks to Scott and Ben for this website and hoping is approved for nonprofit status soon.

Thanks to all our members who continue to help encourage and/or describe their experiences with the syndrome and their doctors. We can change the way the medical profession treats us. We need to be proactive and to educate our doctors as best we can. We are making strides with all of our voices for rare diseases. The internet is actually changing the way our doctors and our insurance companies treat us, but nothing changes quickly.

I am also a member of two other forums for parathyroid disease and thyroid cancer and I am seeing changes happening before my eyes in the last 3 years. Let us aim to make 2014 a great year for us and future sufferers and to offer light and hope on this forum.

From Shawn:

September 11, 2013 ( I thought my surgery date sounded familiar) but it has new meaning. After 15 years of what can simply be called a cluster (you know what), I had the last 3 cm of the 6.5 cm left styloid removed with marked improvement in all my symptoms. Even my severe back pain is less sharp. My Dr. attributes that to reduced stress from the reduced pain or less irritation of the vagus nerve? he taught me about? I'm so much better. I am still in aw after 3 months. While I was all doped up I still noticed less pain.

If you plan on being in or traveling to LA for a looksee-let me know. I have a personal list of the avoided Dr's and the one to see.

I wish everybody here so much luck in finding the doctor and the relief you deserve. I began to give up but this site gave me the contacts I needed to keep going.

this site is the major success story-thank you all ben's friends and Scott for all your hard work!

Thank you all for the quick responses…SHawn if I’m ever in LA I will defiantly stop. I hope to have a great success story if I end up with surgery.

I've posted a success story with photos and phone numbers listed on my profile. I'm in Ohio. I explained in the story that I sought help from my dentist who had a 3D cat scan machine. It showed clearly what the problem was. See an Otolaryngologist, Vocal Chord Specialist, usually in bigger cities and large universities with medical programs.

mom4 said:

Really? No positive feedback its a little discouraging. I think this is where we need the doctors list for the new members for help and diagnosis. I think that is positive info :)

How exciting that you’re having a baby! Congratulations!! Life does go on! :heart: