This eagles has taken over my life! I had bilateral calcification to my hyoid removed extraorally on apr. 30. Surgeon said when he went in he was shocked to see 3 bones on each side lined up " like a picket fence"… He stretched my hypoglossAl nerve to extract and I was left with no tongue movement. This meant no eating/ speaking and a feeding tube followed. Praise god I’ve regained movement int tongue and I’ve resumed eating & speaking. I’ve been through hell & nothing has resolved! I’m having constant ear pain/ headaches now with shooting nerve pain constantly! Also when I stand up, I have to brace as I feel as though I’m going to lose consciousness. Very dizzy. I feel hopeless of this condition. Feel like a monster with these 4 inch scars on each side of my neck! Any hope for those of us who had styloids removed with no relief?? Feeling desperate for my life back!!’
Suzy, I am so sorry that you are having all these complications and no relief. I just want you to know that you are in my prayers. I still have pain from time to time and it is scary so I can't imagine how you are feeling, but I do know that you are probably terribly scared and feel alone. You are not alone and I hope others will be of more help than I can be.
Some of our members are still in pain, some take drugs for nerve pain. Badeagle still has constant head pain, though other symptoms are better and he is still searching for answers. I am sure that many more still have issues. I hope someone else will please send you some replies and cheers and some helpful comments. My prayer for you is that you find relief soon.
Thanks Emma, really appreciate your comment & well wishes. Hoping your pain ends also. Although I feel bad for anyone that’s going through the same stuff as me, it’s comforting to know I’m not alone! Thanks.
Suzy,
I do know what you are feeling and going through. My recovery has been very difficult too. Not as difficult as yours. This as truly shaking me to the core. I have hope & faith it will get better for the both of us. My Maker is carrying me and has not left my side. He is not done with me yet. The progress is slow, very slow. What has your doctor told you about your recovery? Did he stretch out other nerves?
If I remember correctly your doctor did both sides at the same time, is that correct? Do you still have a lot of inflammation in your neck? I think by having both sides done at the same time was to much for your body or anyone to handle. Then to have 3 bones removed each side along with nerve damage made it worse.
Please know you are not alone and there is hope. I agree with Emma about nerve pain medication. I am on nerve pain medication and will be until I have the left side removed and recover from that. My doctor said 3-9 months to really see a difference with nerve pain and symptoms. That is with just one side done at a time. Don't loose hope keep the faith and seek help for the nerve pain.
When do you see your doctor/surgeon again? I would go over all your issues, concerns and he needs to help you figure this out and try to get you some pain relieve. He is your doctor and he needs to work for you and help you. I am Praying for you.
I sleep/rest as much as I can. I cycle through 6 gel ice packs throughout the day and take extra magnesium capsules to help with nerve and muscle repair, 3,000-4,000 mg of C along with my pain meds and ibuprofen. I am sure you are probably doing most of those things as well.
Hang in there my fellow ES warrior. I am sending you a soft comforting hug.
I am so sorry about your situation Suzy. I pray that eventually you will feel some relief. I agree with Bigsbug, you need to have a consultation about pain management with your doctor. If your doctor can't help, then ask for recommendations. We have to be our own health advocate and ask the hard, important questions to our doctors that treat us. Think about what you have gone through having 3 bones worked on. That is some serious procedure you went through. That is a lot of high stress on the body. Remember we have major structures in our throat area and inflammation that persists will upset our systems. The important thing is to try to calm down and take deep breathes to get your stress level in check. I know you feel hopeless, abandoned and scared, but we have all been there and will be for you. Please hang in there and have faith that in time this will be better. God bless you and guide you toward finding solutions to ease your pain and mental anxiety.
With kind regards,
Viperbone- almost three weeks out of post-right styloid surgery
I am so sorry to hear this! I will pray for you!
Suzy,
It could just be inflamation that still needs to resolve itself, I would give it a few more weeks with ice and anti inflamitories. If thing dont start to improve slowly then maybe It may be time to request a new MRI or a CT angio gram to see what remains and if there is still a problem that needs to be resolved. Some of our members did not have enough of the styloid removed up high enough to stop any compression between remaining styloid and jugular or carotids and the c-1 and c-2 disk. The passing out feeling could be nerve related or carotid related. Just a thought. I would ask the doctor about these things.
RB
Try watching Ian DeLeon's youtube talks on the subject. He's a sufferer who went through two separate surgeries and wasn't really relieved until after the second.
Thanks fuzz!!!
Suzy:
You’re in the right place, doing the right thing. Reaching out. Asking for help. Identifying with others who are in the same situation that you are in. There’s hope in that. I think that’s why we’re all here! I’ve had my pain for 20 years and done everything imaginable and had ZERO results. I had my left styloid removed last week, part of my hyoid removed and a section of my hyoid repaired becaused it was fractured in a car accident 6 1/2 years ago. In 2 to 4 months I’ll go in to have my right styloid removed and the right upper part of my hyoid removed (picket fences too!!!) and the surgeon will remove any calcification he finds around the trachea, esophagus, jawbone, clavicle like he did on the left.
He told me to expect pain for months. That this would be an issue that will more than likely not resolve itself quickly. I have come to accept that I don’t have any control over this at all. I have spent 20 years in extreme pain, not knowing its source. I didn’t find out I have Eagles until June of this year! I had no idea that 2 little spikes were causing me all my problems!!! I had neurologists and pain doctors telling me for years that I was normal, that nothing was wrong, that “We’re sorry, we can’t tell you WHY you feel so terrible.”
So, knowledge is power! Acceptance is power! And in order to accept something, you don’t have to like it. Acceptance and approval don’t go hand in hand. Do I approve of 9-11-2001? I don’t like that it happened, but I accept that it did so I can heal. I DO NOT LIKE the fact that I suffered unknowingly for years but I accept it for what it is so I can empower myself today.
I’m a week out from my surgery and I still feel the evil snapping and grinding in my throat when I swallow. It still “catches.” the clicking and popping in my left ear is gone when I swallow. Then creaking and grinding sounds on the left in my neck are gone. But there is still that fear in the back of my mind that the neck pain and snapping will never go away. But then I have to come back to acceptance. Acceptance. I now know what I’m up against! I have had surgery and have gained at least a little relief from my symptoms. Not 100% relief like I wanted (because I still have another surgery and still - 100% relief is not guaranteed) So if I get a reduction then maybe I should be grateful? I say this with a question mark because I’m 43 years old and I have a sister that’s 45. When she was 14 she was diagnosed with rheumatoid arthritis, damn near crippled her before she was diagnosed. She will NEVER, ever, escape her pain. Ever. So, I look for ways to find gratitude and be proactive in my situation. 
There is always hope, another viewpoint, a second opinion, another option, a different way or if you’re having a bad day, sit down, close your eyes, take a few deep breaths and start your day over !!! 
There’s always another way, another choice to be made! The grass is always greener from a different perspective if I’m looking in the right places!
Life is challenging enough and when you throw in physical pain on top of it, it can get messy as all get out 
grrrr!!! It CAN be overcome! It can and will be done :)))))
Unfortunately the 2nd surgery didn't help at all I need to make a update video.
fuzz said:
Try watching Ian DeLeon's youtube talks on the subject. He's a sufferer who went through two separate surgeries and wasn't really relieved until after the second.
Super disappointed to hear your 2nd surgery didn’t bring relief! I read somewhere you were investigating treatment for Ernest syndrome. Seems hopeful and I’m curious to know if this will bring relief. Although for me, I’m really nervous when talking about nerve manipulation now! Praying for your recovery. Thanks for updating us
Yeah what I’ve read on Ernest clinic .org is interesting there is also a testimonial of someone who had eagles syndrome on that page it’s like the third or fourth testimonial Dr Ernest still practices but they don’t take insurance when I called awhile back sounded like it would be under 2000 for him to run his test and if needed do a Radio frequency treatment sucks how there is no answer I had a oral surgeon give me a Novocain shot were they suggest for Ernest syndrome but it didn’t make the symptoms stop and his practice isn’t known well the testimonial on his page says the guy with eagles had radio frequency treatment for temporal tendinitis ugh sounds like Dr Ernest knows his stuff wish I saw him before the Brain surgery I emailed them asking them to find they patient with eagles and ask them to join this site but no response …
Hi just checked out his website ernestclinic.com & tried to see about a consult. It said he is on a leave indefinitely & can’t accept any new patients. See the neurologist today. Maybe he can offer some suggestions. Although now I’m on the hunt to explore this treatment! Hopefully in SoCal. Fingers crossed!! Let me know if you come across anything & THANKYOU for sharing all your info with us. Like you I have two young sons & giving up is not an option. Thanks again
Am praying that you feel better soon Suzy.
Tiki THANKYOU SO MUCH! I believe in the power of prayer & appreciate it!! Saw the neurologist today and he prescribed a anti seizure drug typically used to treat neuropathy & he’s hopeful it will work! Praying for a miracle! Thanks