I’m new everyone. I think I have been battling ES since the 1980’s or at least something related to it. I have been to so many doctors, PAs, CNPs, and whoever else is in the medical field. I’ve been poked, prodded, radiated and tested by so many medical people I’m sure that I glow. Every one of the providers has said we can’t find anything wrong except for a couple who did say I had vertigo, and Meniere’s Disease. They however did not give me any suggestions how to compensate for the symptoms. I have had Physical Therapy and voice therapy. The voice therapy has helped with my singing for a while. I have used two types of opioid pain meds, but they have caused me to have very severe constipation. I can’t use nsaids because of my kidneys. That leaves Tylenol. The PT hasn’t helped much at all. Finally, I found a wonderful ENT who comes to my town one week a month. I told him what I’ve been through, and he said don’t worry we’ll get to the bottom of this, and he did. He can diagnose it but can’t really treat it except for sending me for therapy and prescribing meds. He found an ENT surgeon head and neck. I’m now waiting for my surgery date of April 14th. I’m nervous. please be with me y’all. Too much right now to tell you what all I’ve had going on. Another time.
Hi & welcome @Sandys_Mom21 ! So pleased that you have finally got a diagnosis, sadly it’s not unusual on here to read that people have been suffering for years, but hopefully you’re on the right track now to improve your health!
I’m sure that @Isaiah_40_31 has given you lots of info about what to expect, but just in case I’ll post some links with info:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And one of our members wrote a surgery shopping list with suggestions of what to get ready:
Surgery shopping list - General - Living with Eagle
I’ll make a note of your surgery date and will pray that all goes well 
Thank you for welcoming me. Basiclly I’m a very shy person who is not a computer techy.
I am not used to speaking out to others but I will try. Right now im very tired even though i actually slept a whole night last night.
Again thank you. Many Blessings from our Lord and Saviour. My prayers are going out for you and all of our members.
Beautiful dog, I hope she/ he keeps you company on your difficult days!
Shes gone. Lost her in 2021. I was giving her IVs 3-5 times a day. It got so hard for me. She was such a sweetie. We just had to put her down. Rough day.
I’m sorry for your loss. That’s the hard thing about pets…rarely do they outlive us. I hope at some point you’ll be able to have another furry friend who helps to fill the hole she left. 
Oh no, I’m so sorry, very hard losing a fur baby
will be praying for you on April 14th🙏
@Luba any word on your surgery date? Are you still waiting to hear back?
still waiting…
OH NO! @Luba. Can you call to check in to see if you can get idea of how much longer it will be?
I can call but it won’t change anything. The nurse told me they received my pre-op papers and I needed to wait. I may call if they do not get back to me in April just to check.
Thank you for your prayers for my April 14th surgery. Tomorrow 27th I go to OSU in Columbus Ohio for my presurgical testing. I’m having a bit of nerve attack. Broke down crying 3-4 times this past week. I haven’t had much chance to talk with any of my doctors yet. I have only talked with Dr. DeSilva once.
Sandys_ Mom
We have March 27th now in Canada. Are you in the States?
I will pray for your tests tomorrow. I cried myself too in September when I was diagnosed and did not know where to go. Praise God I found this forum. I have read some successful stories here and got encouraged though scared still waiting my own surgery
I’m praying for your pre-op testing to go well tomorrow, too. You have a lot of health challenges going on, @Sandys_Mom21. For me, crying is a good pressure reliever which can help me cope better. I hope your tears have also helped you. Will you get to see Dr. DeSilva when you’re at OSU tomorrow?
Let us know how the testing goes, it’s such a slog of a journey you’re on
Pre op testing went well. I figured by the time they were finished drawing blood samples I would need to go out somewhere and ask to borrow or buy some extra just in case I would need some. The x-rays didn’t take long. It took longer to set up and attach the ECG than it did to actually test it.
I did not get to see or talk to my Dr. Brad Desilva. It turned out he had taken some vacation time with his family. His office assistant told me to call him or message him and i just felt odd doing that. I broke down and cried for quite some time. Sam said to please reach out to him. He told me he would not let me off of my call with him until i calmed down and promised to call him. Sam said Dr is always there for his patients whether he’s on vacation or not. I messaged him and he called me the next day.
Today after church i was talking to a lady about my approx.120 yr old quilt and suddenly heard myself say “I’m going down” next thing I knew people had brought a chair, damp cloths, water, and the Pastor. I had blacked out. This has happened a number of times recently. I don’t know if that is part of ES or not.
Hard part is My husband’s disease somewhat renders him oblivious to how to help me or even that i needed help. I could hear someone telling him I had blacked out and he kind of just stared at them. His disease is a bit rare too. He doesn’t look sick but he just doesn’t understand what is going on around him . He’s on chemo all the time. No dementia.
Blessings to you Wendy and Jules.
From
Bev.
Sandys_Mom
Oh no, poor you…I’m glad you were there with people to take care of you! It could be ES; the Vagus nerve can be affected which can cause BP issues, or sometimes certain head positions can bring the styloids into contact with the carotid arteries & that can cause heart arrythmias and fainting. Some members have POTS alongside ES which causes drops in BP too…I’m glad Dr DeSilva sounds so caring…
And a happy birthday to you 
I hope you’re able to enjoy your day with everything going on…
Thank you for caring🙂. And for the birthday wishes.
Pastor’s little boy came over and gave me a hug. Such a sweet one. He’s 5.
Happy Birthday, @Sandys_Mom21! I just saw the little cake next your screen name. What a nice birthday gift from your pastor’s son. He sounds like a nice little guy.
I’m sorry to hear about your husband’s health challenge & especially that you both have problems that don’t have an easy cure. Hopefully once you have your surgery w/ Dr. DeSilva, you’ll start feeling better. You’ll likely need to have both sides done to get the best results, but you should still get some good symptoms relief after the first styloid is shortened.