Thanks Jules. The amazing thing is the pre-surgery symptom pain hasn’t just improved, it’s simply gone, like it was never there. The surgery pain itself is pretty bad, but well worth it because I know it will slowly get better. I’m so thankful that a friend helped me find this forum, otherwise I would have given up before pushing the Drs for a solution.
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I guess I feel like they should have helped guide me to a solution rather than me have to manipulate them out of sheer frustration and exhaustion. I just hope this encourages another newcomer to the forum to not give up and be their own advocate. 
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WOW! This is great news, Mark! I’m so glad the second doctor “did the trick”. Intraoral surgery can be a bit slower to recover from than external so don’t get discouraged. I’m thrilled to read that your ES pain is totally gone! That is the best possible outcome.
As far as starting your own post goes, if you click on the General Discussions link, the page that comes up has a tab on the right that says +New Topic. Click on that & you can start your own topic. If the General Discussions link gives you a page w/ 2 columns, click on the word “more…” at the bottom of either column & a page will come up w/ the +New Topic link.
I hope you heal well & get back to those long runs with your wife soon!!
Thanks “Isaiah”. Frankly, I would not have had the knowledge or the courage to pursue doctors to a conclusion had it not been for you and this forum. I feel like I have my life back now. Thanks for advising concerning the healing from surgery. I wasn’t sure what to expect, but it’s been 6 days post op and I’m still pretty sore. Doesn’t matter because I know this will heal and my actual root cause pain is gone. You helped save my life, literally! Thank you. I can’t believe each day that I wake up and I am symptom pain free, and there are no pain attacks on the way.
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Woo Hoo Mark!
This gives me goose bumps and makes me smile. This patient blog has helped me in a very short period of time and led me to Dr. Samji who I will see in a couple of days and will schedule surgery. After decades of pain, hammering on doctor after doctors offices, I’m finally in the right spot. It is a sad state of our medical system we have to go thru this. I just had to force my PCP to order the CT scan as well and twist his arm to get 12 oxycodone for the extreme pain I was in after a neurologist suggested Eagles. My PCP didn’t think I had Eagles and downplayed my request. “Oh, you patients”. I just laughed him off, like he did to me. He sent me the results with no comment. I cannot tell you how much satisfaction I got from proving him wrong. That neurologist who brought up eagles was my savior however I had to take the ball (research it) and run with it and push hard. Many of us have pushed year after year and a tiring path. Im with you, don’t ever give up!
We must never give up on the journey to being pain free and your success story will lift many up to keep pushing through till resolution. Your story is an inspiration.
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WOOHOO!!! So glad you found a remedy for your pain! In case it’s helpful to know, my experience with intraoral was that it hurt like !@#$ at first but then about day 10 I woke up with no pain at all from the procedure.
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Thank you so much. I hope this does help ES newcomers understand that the battle to get a diagnosis and treatment seems larger than the pain at times, but in the end the pain wins so you keep pushing for a solution. Also, pain on one side may be the result of the elongated styloid on the opposite side, as was in my case. There is no way of testing or proving this, and don’t let any surgeon tell you differently. After my first surgery, my surgeon refused to do the other side, he very strongly stated and put in my medical record that it wouldn’t help. I sought another surgeon who after reading this report had hesitations. This is where God intervened. After explaining my hopeless situation, God softened his heart. He actually said to me that he would proceed on the basis of my desperation, and wrote this in my medical record. I don’t think he really believed it was going to work. He literally jumped with surprise and joy when 3 days later I gave him the result. Don’t give up, and pray a lot… even if you don’t believe in prayer. I did, and it worked for me.
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Thank you for this VERY positive post, Mark! YES! God does answer prayer, but not always in the timing or in the way we hope. He is faithful & loves us no matter what!
Happy trails to you 
& quick recovery, too!
Thank you Isaiah! Now that I am healing, my next big life’s challenge will be to learn how to navigate this website- Ha! It took me 5 years to find a solution toon to my ES, hopefully lily it won’t take that long to figure this out. Apparently other people have, so there is some hope for me
So helpful sharing your story, we’ve believed before that ES pain can ‘cross over’, yours is very clear cut & proof of that! What a wonderful answer to prayer!
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Hi Mark,
Click on the gray “How To Use This Site” tab at the top of the page & watch the short videos there. They will help you learn how to navigate the forum. Trust me when I say, there is still alot I don’t know how to do here, & I’m on this forum everyday for some length of time. SHEESH! Clearly I’m tech-challenged! 
Thanks Isaiah!
Update:
Hi everyone. So about 2 months ago same time i stopped breastfeeding i started gagging into the toilet again. This happens a few times a day. I just start gagging. I thought maybe hormonal? But then a feeling of something poking into my throat on the right side began. I tried to ignore it n hope it would go away. Its gotten stronger and has gagging. Cant be ignored any longer. Something is going on with my throat. I am sure at this point it has something to do with eagles. I made an apt with a local ent to ask for a new scan. Then ill send it off to cognetti. Cognetti said he never had a patients grow back but it sure as heck feels like the one patient is going to be me. The issues are on the right side. The side when i woke up from surgery he told me he had to leave a little bc of the facial nerve.
I am very depressed at this point. Ive spent so much trying to get myself healthy. I just want to be here for my lil girl. Idk if i could go thro this again. Im working on making a will. If it did in fact come back does anyone know my options?
-go back to cognetti?
-maybe samji could go back further
I cant keep struggling like this. I really cant live with these symptoms. The gagging is so bad im having a hard time. N in my state ur only allowed 1 leave every 12 months. I already took a maternity leave. I dont think i can wait til december with this feeling. N if they wont operate idk wat to do i cant live over the toilet gagging constantly. 
I’m so sorry that you’re having this again after you’ve had surgery. It’s so tough, but you have to try to be strong for your little girl. If you’re feeling desperate, there’s info on the home page about organisations that you can talk to, & we understand on here too.
Hopefully you’ll be able to get a scan done soon, & then you’ll know whether the styloid had grown back or not- it is very rare but there have been a few members who have had that, usually a longer time after surgery than you, although you are young…Unfortunately although experienced doctors remove as far back to the skull base as possible, if one of your nerves is very close it may be that not as much as they’d like can be taken off. They monitor your nerves during surgery so if there’s too much stress on a nerve, the doctor will stop to avoid damage. Dr Samji has had to do that too. As for revision surgery, hopefully Isaiah will answer too, but I do believe Dr Samji has done them, not sure about Dr Cognetti.
It may be scar tissue irritating nerves otherwise, in which case there are some treatments that might help- there have been some discussions about cold laser therapy which some members have found helpful.
Let us know how you get on with your CT; try to get a copy of it yourself then you can send it to different doctors if you need to.
I’m UK so I’m afraid I can’t help with advice about leave, insurance etc as we have a different system here.
Just a thought- have you done a pregnancy test, is there a chance the gagging might be morning sickness, & the gagging could irritate nerves which could set off the feeling of something in your throat?
Sending you hugs, wish there was more I could say to help…
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Hi Jules. Thanks for the response. I did speak with isaiah earlier myself. She is always very kind. No theres no chance of pregnancy. Its not possible…my husband n i have not done anything since she was born and i have gotten regular periods since stopping breastfeeding. Its like something is choking me again 
. Thank you for the info on how far back they can go. My apt is Wednesday with a local ent. I just wish this feeling would go away. Im such a miserable person since i got eagles. Thank u again for ur support ill keep you all updated on the scan. 
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Hi Cupcake5,
There is an excellent ENT surgeon (Dr Mark deLacure, NYU, New York City - has done surgery on 2 or 3 members - https://nyulangone.org/doctors/1326049453/mark-d-delacure ) in NYC who did BrooklynGirl’s second surgery (Cognetti did her first one). He would definitely be an option for a second opinion if you get a new CT scan. He’s also much closer to you than Dr. Samji. If you do see or consult w/ him, do not tell him that Dr. Cognetti didn’t cut your styloid all the way back because of your facial nerve as that might bias his opinion. Just let him know you’ve already had bilateral ES surgery, & if the CT shows it, let him know you’ve had regrowth & are considering having a revision surgery. Some doctors are more comfortable w/ working close to nerves than others. Of course, no doctor wants to cause nerve damage, so they all err on the side of caution.
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Hi Cupcake,
I am sorry you have having a tough time. I would see Dr. Delacure for a second opinion. He and his staff are caring and patient.
Both are reputable surgeons.
A tale of two surgeries by two different surgeons.
Dr. C did my first external surgery. The incision was small but he left a nub at the skull base. I had some CRAZY nerve issues from aggravated nerves that lasted for 6 weeks or so. (Dr. C told me that he always leaves a nub)
Dr. DeLacure did the second surgery, also external. The incision was twice as long but he removed the entire styloid to the base of the skull I did not have the crazy aggravated nerve pain that I did from the first surgery.
Pros/cons
A smaller incision but not a complete removal. With a smaller incision maybe the nerves are moved out of the way to get to the styloid which may have been the reason for the aggravated nerves. (?)
A larger incision may make it easier to get to the skull base and work around the nerves. No aggravated nerves, but I did have more localized pain that is almost gone now 3 months post op.
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Hi everyone. I hope your doing well. So my eagles journey has ups n downs since surgery. Just wondering if anyone has insite on eye issues from this? I always had 20/20 vision. Then when i had eagle syndrome i had severe right eye pain. It felt like my eye ball was going to pop out of the socket. And i noticed it started getting a little blurry. Only like some far away letters on a computer screen. After eagles surgery the eye pain went away. The slight blurriness stayed but it didnt really bother me. All of a sudden. Since this past weekend. My right eye is completley like blurry. Distance is worse. I went to the eye dr today. He did every scan imaginable in the office and he said everything looks fine. He said he would have seen some kind of scarring or something if there was damage. He thinks i just need glasses. It doesnt make sense why its one eye and the eye i had eye pain with. Does anyone have any clue if eagle syndrome could have caused this? My left eye is fine. But he ordered me glasses.
Also, the feeling of something in my throat went away. Then it came back n went away again. So right now only remaining symptoms:
-occasional nerve pain or tingling randomly -head/face
-heartbeat in left ear (never went away)
-stomach issues- SIBO
-blurry right eye.
-occasional feeling of something right side of throat.
Hi Cupcake5,
First, I’m glad you were able to get in to see an eye doctor so quickly. I can suggest this about your vision change: Since your right eye was already not seeing perfectly, it probably gets more fatigued than your left as you work from your computer. Over time, the weaker eye has “quietly” gotten gradually worse but so slowly you didn’t notice it until it was significantly worse. I have noticed since we’ve been sheltering in place that my vision seems to be changing. There are days I have to wear reading glasses plus my contacts to see my computer screen clearly. I have also been spending a lot more time on my computer over these last 7 weeks. I suspect part of my problem is eye fatigue. Glasses will likely be a good solution for you as your weaker eye will benefit from the support that glasses will give it.
As far as your remaining/recurrent ES symptoms go, it sounds like some of your nerves haven’t completely recovered from ES, & they’re sounding off from time to time. If the symptoms are affecting your life significantly, you should talk to your doctor about prescribing a nerve pain medication. There are many different ones so if you get a bad reaction from one, there are others that can help. It can take up to a month for a nerve pain medication to help as a person is usually started on a low dose which is increased gradually over some weeks until it reaches an amount that lowers/stops the pain. The gradual increase also helps your body get used to the medication slowly so there are less or less severe side effects.
I hope you get some additional replies to your question. I’m interested in what others on this forum think.
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I do agree with Isaiah- I’ve noticed vision problems with more screen time, & my glasses don’t seem to be helping, I had to do online training yesterday & was surprised how I was finding reading some of it difficult. I’m due a checkup soon so will see- pardon the pun!
If you hadn’t been checked over I’d suggest that, but as you have then I wouldn’t be concerned, the joy of getting a little older! (Increased pressure in the head caused by jugular compression by the styloids could in very severe cases can cause some damage to the optic nerve, but that would be seen during an examination, plus you’ve had surgery so no need to worry about that, I’ve just added this note in for anyone pre-surgery who might read the post)
I have dry eyes, it started with the ES symptoms so is linked, & that can make my vision blurry too, as well as eyes very sore.
I do still have a bit of nerve pain, it improved after surgery but didn’t go completely, so I do still take a low dose of Amitriptyline. It might be worth considering medication if you still have quite a bit of pain, as Isaiah suggested. The feeling of something you get in your throat is a nerve thing, not often something actually in your throat, so it could be that the nerve is still healing & that’s why you get a flare every now & then, or maybe a bit of scar tissue irritating it.
Other members, like emma, have seen improvements quite a long time after surgery, so you could still see some too, I hope.
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