After waiting nearly 2 years on public it’s finally done. So far I feel that my neck pain has gone, my nose doesn’t feel congested and I can actually lay on my back without the feeling of being strangled
The pain clinic put me on special nerve painkillers called pregablin as they said the traditional endone and tramadol aren’t good for nerve pain. The surgery was done on the morning of 12th and Dr. Roy Nicholson has done a really good job the nurse said with the incision.
I had the external approach done. He removed 3 quarters of the styloid because he couldn’t get it all as it was close to the jugular. The styloid was measured at 4.6cm with calcification and it’s my left side. I had 5 people from the pain clinic interview me about eagle syndrome to learn about it and how it has affected my life.
They got me to stay 1 more night as 12 people are going to interview me at once. This is great as it will bring awareness. So far the only pain I’m having is the throat from the tube during surgery and I have a little discomfort with the wound.
Thank you so much for this post. My son is going in on Monday to have one of his styloids removed. His symptoms are similar to yours--well, pre-surgery. I pray your recovery continues and you get the peace you deserve. I know first hand how difficult it is to wait for help. You did it and you should feel very proud of yourself for persevering, surviving & staying the course until you got the proper help. Thank you for taking the time post op to educate other practitioners. I will also ask for that mediation for post surgery.
Ken, that is great news, some docs have never even heard of it, which is a shame, you'd think they know it all or at least have a working knowledge of it, I never even went to college!>
I also had external approach with swallowing complications and wore NG tube for about a week til it popped out when i coughed, I don't think I was getting proper nutrition either. Better now but tongue is not mdiline I had issues pre-surgery with tongue etc. Will fill everyone in on this when I see the vascular surgeon, as I am having bloodflow issues I had pre-operatively that my surgery has not totally resolved!
Please read my posts regarding MRI contrast, it is staying in peoples bodies and causing issues off its' own, no matter what the kidney status! Good luck!
I just returned from Kentucky .
Dr Okeson at university of Kentucky oral facial pain clinic. Learned so much.
Just bc I had an elongated styloid did not mean that the constant 24/7 pain was eagles syndrome.
They did nerve blocks in my mouth and if I still had pain it would have been eagles syndrome.
I had the pain in my mouth but failed the other other two critieria . Jabbing pain when turning head . I just have tightness.
I learned that the pain on the outside of my face was muscular and the pain inside ( that tooth pain that is throbbing is neurological).
My suggestion to anyone is get your three d sono and panexray but even with elongated styloid a and four years of bad pain 24/7.
Dr Okeson was the most competiant and best drs I’ve seen throughout my treatments etc… He made sure that we had a plan in place and helped us understand. He helped us understand that what I have is nerves gone haywire and not eagles. So gratful. Was treated with injections and such for two days and they will be raining my dentist fir inside and outside my mouth and face.
Please recommend Dr Okeson for the doctors to treat eagle syndrome. I cannot figure out how to on my phone.
I’m going to keep praying for all you with eagles syndrome.
They compared eagles syndrome to a bludging disc. Many people have bludging discs but they walk around without any symptoms. Many people like myself have elongated styloid a but on a few have Eagles syndrome.
More injections and anti seizure meds until the nerves settle down and stop giving wrong messages to the brain.
Tiagito78 - I posted this answer on the other thread you commented on, but for the purposes of this thread, the surgery went well. We are only a few days out of surgery and my son has no more scraping or cracking with sharp pain going through his neck when he turns his head. He also has almost no throat pain. This throat pain would stop him from speaking each morning for several hours. It is nice to hear his voice in the morning. He is stiff in the neck and swollen, which is all normal. I will keep posting as he recovers. So far, so good.
Thankyou everyone for your blessings/concerns. So far the recovery has been great. I feel the recovery is 80% so far. My sleep has been better and the throat pain has improved.
The incision is still swallon which is to be expected. Now I’m feeling like my rightside is hurting now. Might of been like that all along but didn’t notice as much because of how bad the left side was.
When I see dr.roy for my followup I’m going to ask about the right side as that was elongated aswell but wasn’t calcified
So done I am pretty sure that all Eagles sufferers do not have jabbing pain when they turn their heads. I have not heard that this has to be a symptom? Some people have problems from the calcified ligaments that come with the Eagles package. I don't think they would have jabbing but they still have Eagles. i thought the two big tests were touching the tonsillar site and seeing if it caused symptoms and putting local anesthetic in the area of the styloids and seeing if this reduces the pain and other symptoms. Sometimes the styloids can be felt but not always. Maybe I am wrong, anyone else?
You are right based on my knowledge Peacefulbuttons.
peacefulbuttons said:
So done I am pretty sure that all Eagles sufferers do not have jabbing pain when they turn their heads. I have not heard that this has to be a symptom? Some people have problems from the calcified ligaments that come with the Eagles package. I don't think they would have jabbing but they still have Eagles. i thought the two big tests were touching the tonsillar site and seeing if it caused symptoms and putting local anesthetic in the area of the styloids and seeing if this reduces the pain and other symptoms. Sometimes the styloids can be felt but not always. Maybe I am wrong, anyone else?
I think some of these doctors see a couple cases and then decide that all Eagles cases have to be exactly the same as those. I've heard of a doctor who thought it wasn't true Eagles if there wasn't ear pain. I've heard of a number of doctors who said it can't be Eagles if it's bilateral. Another doctor I heard of said if he manipulates the hyoid bone and there's no pain, then it's not true Eagles. I've been to a doctor that said if the styloid hits the arteries or veins then it's not Eagles. I've been to a pain doctor at a well-know institution who said he didn't believe there was such a thing as Eagles.
peacefulbuttons said:
So done I am pretty sure that all Eagles sufferers do not have jabbing pain when they turn their heads. I have not heard that this has to be a symptom? Some people have problems from the calcified ligaments that come with the Eagles package. I don't think they would have jabbing but they still have Eagles. i thought the two big tests were touching the tonsillar site and seeing if it caused symptoms and putting local anesthetic in the area of the styloids and seeing if this reduces the pain and other symptoms. Sometimes the styloids can be felt but not always. Maybe I am wrong, anyone else?
Hey Pawel and everyone, just another update on my current situation.
To answer Pawel's questions first, the hyper sensitivity to sounds has gone away. It was because of how much my left ear was hurting that the sound vibrations would cause more pain. The lazy eye issue i've had was since i was born which was lazy eye plus another issue i had that caused the bad vision, i don't think eagle syndrome was linked with it, it could of made it worse because of the bad sleep i was having.
It's been 20 days since the operation and i can say it's done wonders for me, my left side was causing me really bad pain and symptoms but my right side still is giving me issues. If i were to rate the pain for the left and right I would rate the left 10 out of 10 and the right 6-7 out of 10. I had the followup appointment with the surgeons a few days ago and they are willing to do the right side for me, but i need to wait 3 months for the left side to completely heal up.
The symptoms that i can think of that has cleared up by 70-80% are:
1. Nose congestion
2. Neck, shoulder, arm, and back pain
3. Jaw/Teeth pain
4. Foreign body in the throat
5. Ear pain
6. Left eye pain
7. Sleep has improved. I am able to lay on my back comfortably without the feeling of being choked
8. Left eye doesn't have the bloodshot anymore, just my right one does
9. I am able to turn my head to the right, but turning to the left hurts because of the right side pain
10. I'm not getting as much excessive saliva as i used to, but still a little bit
11. Swallowing has improved
Are you getting surgery soon Pawel and when?
Pawel said:
Hi KenD, wish you quick recovery. It's goog to know that most od your symptoms got away only 2 days after the surgery.
I don't know if you remember, we've talked about eagle syndrome. I have some questions. Could you be so kind and answer? :)
I wonder if your hyper sensitivity for sounds (hyperacusis) got away after surgery?
… and what about your eye? do you have eye pain still, and lazy eye?
kend did you have any nausea before the surgery and pain at the back of the neck (cervical area)and also pain in the front of the throat like in the cartilage area in front of the neck and painful salivary glands under the bottom jaw line ? who long were the styloids ? and finally how much did the doctor remove ? did you have any ligaments involvement as well ? thank you!!
@tiagito78 I can say for sure i had those symptoms you described. last time i had the scan the styloids were measured at 4.3 cm. They didn't say specifically how much they removed, but something like 3 quarters. there was no ligaments involved
@Pawel I would say it was about 25% less bloodshot than in that picture. I recommend that you go through with the surgery because you don't want to live with this pain for the rest of your life.
KenD tHank you for informations. How are you now? Is it really really better? Can you say that all of your symptoms are gone? ( off course besides the wound, because it's probably take some time :) )
I'm still confused, I really want to remove this thing from my neck, but I really can't find any expirienced doctor.
