Thank you ladies you are amazing. Yes i asked the eye dr so many questions. He kept saying if i had damage from eagles or head pressure he would have seen some damage in the tests but he did not. I still think its strange its one eye. I havent left the house since this all started til today. I wonder if u ladies r correct bc im on the conputer all day and work has been soo busy. Usually get a break between calls but now its constant. So i dont get to look away from the computer. Maybe i will ask my dr about nerve meds. All my drs apts have been post poned i was lucky to get into the eye dr. It was scary they took my temp at the dr and made me put on gloves n mask. I order groceries so i havent seen outside world. Hope you are all staying safe. Waiting for my glasses to come in. Ill let you all know how i make out. Hopefully in time nerves continue to heal. I had a “good” week last week. Everything was good even stomach. Til i went outside for a walk saturday n i noticed distance was blurry. I got so nervous i started shaking n then my stomach got bad again.
You should be having an “Aha moment” regarding your stomach. As you noted, as soon as you stressed out about your eyes, your stomach issues flared. Your stomach is very sensitive to your stress level. I hope it has calmed down & you’re feeling better now. Try to take your health issues in stride rather than panicking any time something new crops up. It will help you mentally & physically if you can teach yourself to remain calm. Fear/panic keeps your body in a state of “fight or flight” which means your adrenaline/cortisol levels continuously elevated. When you have too much cortisol constantly in your system, it can cause longer term problems like you experience with your stomach.
Almost 2 yrs post op. Had a rescan done. Im cery upset. Either it re-grew or he didnt take out enough. Never heard of this happening at hyoid end. Im waiting for Dr Cognettis nurse to call me. ;( wonder if this is causing my symptoms.
Others have had calcification at the hyoid end of the stylohyoid ligaments- SewMomma documented her journey with this. I don’t know if Dr Cognetti removed any of the ligament, was there any calcification on it do you know? They’re not always calcified, so doctors don’t always remove them, they’re just detached. It could be that it wasn’t obviously calcified when you had your surgery, so was left in, & has calcified since, you’ll have to see what the nurse says. But it hasn’t ‘re-grown’; it’s calcification of the ligament which might or might not be new.
But very sorry to read that you have some calcification now, it could possibly cause your symptoms…
Hi jules i was fully calcified both sides. I had tmj which caused the ligaments to fully calicify. My understanding was dr cognetti was removing everything so nothing had the chance of coming back or calcifying. Im very upset. Im definatley having some symptoms. Which seem to be getting worse. After i had the baby. I started gagging. I was blamming it on hormones but maybe because this was coming back choking me again. Now i have this pressure coming in my face n pains in my neck. im praying i can find someone to take these out. Not that i want surgery again. But i cant live with these symptoms. I beyond upset. I want to be better for my little girl. I dont know what i did to deserve this in life. Doctors have been known to remove down to the hyoid correct? I dont understand what happened here.
Also dr cognettis office is saying i cant talk to him until a july appointment and they want me to drive there. I dont understand why. I alwAys had video apts with him. They said they would check and call me back.
So sorry that you’ve been left confused by this, but I guess that you won’t get any answers until you can speak to Dr Cognetti as to what’s happened…sending you hugs, keep strong for your baby
I have an apt with cognetti pm tuesday. Im a nervous wreck and in a lot of pain. I cant believe im going through these eagle symptoms again. I thought this was behind me. Here i am sitting with ice on my neck in pain. Im praying a dr could help me soon :(. I wonder if this is why ive had issues since surgery maybe some was still in and its gotten worse.
Hi everyone. My meeting today with cognetti went horriblly. To summarize…i had fully calcified ligaments both sides prior to surgery. I went to cognetti bc of all the good reviews he had in the eagles groups. I was desperate and in a lot of pain. When i went to him he offered surgery right away. I kept asking him if he was taking all he kept saying “yes to skull base as far as he could”.
Well today i found out he DOES NOT nor ever has removed calcified ligaments or ligaments down to hyoid on anyone. He said they do not cause symptoms and only the styloid process cause symptoms. I even have my scans showing the calcified ligaments compressing my jugular veins. He said they dont do that and wouldnt look at or acknowledge my scan.
He proceeded to tel me no dr ever removed them. I said yes they do ive talked to people whove had it done. He told me im talking to patients not drs and they dont know what they are talking about.
I told him i cant live like this in pain. With these symptoms. I was tearing at this point. Trying to hold it together. He told me i needed to address the real issue that i just had a baby and that i have a hormone imbalance. I told him a hormone imbalance does not cause the feeling of knives in your throat. He told me to take a pain killer. He had other patients to get to and hung up on me.
I cant believe i wasted years and money and 2 surgeries on him for nothing. I am devistated. I need my ligaments removed i cant live like this. He told me noone will do this for me. Im praying i could find a good surgeon to help me. thank u everyone for your love and support over the years. I made a HUGE mistake by going to him.
Oh Cupcake, I can just feeeel the disappointment in your post. I’m so sorry you’re going through this.
There’s something that doesn’t add up, isn’t there? Please go to your primary and talk this one through: even your OBGYN might be an empathetic person to unload on, and then help you make a plan for how to proceed.
Do you have your reports from Dr. Cognetti, from the preop consults and the surgical reports too? Those might be helpful going forward.
We’re here for love and support and (we hope) the odd good idea. Hang in there, we’re here to help as much as we can.
I’m so sorry to read this Cupcake, we have never heard anyone having this problem with Dr Cognetti. Isaiah will add that into his entry in the Doctors Info list…Dr Samji definitely does remove ligaments, as do other doctors, so I don’t know why he believes others don’t. As well as this on the Doctors List, I’ll add in the Newbies Guide to make sure members check this clearly with their surgeon before going ahead.
I’m UK, so don’t know the US system very well, or whether you would have any redress or not. I’m sure others on here may be able to give you on info on this?
Will keep praying for you
Thank you so much Jules. I am just very devistated. I was misled to believing he was “removing everything”. I spoke with a woman on the facebook site who had surgery with him in 2018 like me. She js still struggling. I guess he told her prior to surgery he doesnt remove the full calcified ligament. Therfor surgery with him didnt help her either. I wish he told me that prior and i wish i asked more specific questions. I asked if he was taking everything out he kept saying yes everything as close to skull base as possible. I didnt know he was leaving the ligaments calcified. This is why i belive some of my symptoms remained such as my heartbeat in ear. Feeling of bones in my throat. Etc. its very hard to find a surgeon now to help me. I went to one in Nyc yesterday who said he wouldnt help me bc he knows my surgeon. He said if it was a differenr surgeon maybe he would help. But not such a well known surgeon. Im afraid noone will help me. I know i can get better if i just get these taken out. You know when you google eagle syndrome it says surgery is the cure etc. it sounds so easy. It doesnt say how hard it is to find a surgeon to do it correctly. Im begging for help here. I dont know why noone will help me. Like ill pay them for the surgeries obviously and im asking for help. Im accepting the risks. Why wont they help me.
Is it possible for dr cognetti to deter people from helping me? He told me NOONE Removes the full calcified ligaments and NOONE will do this for me. Almost like he was threatening me. I dont understand why im asking for help n he was so mean. Im suffering here n its like he wants me to suffer. Like if he cant help me fine but why stop others who could try to help me. I would never wish bad on anyone. If i couldnt help someone i would pray they would find help somewhere else.
I’m sorry you’re feeling like this: it’s really hard to know what to do, isn’t it? You probably feel like crawling in bed with your baby and hiding under the quilt. But that’s not going to help in the long run.
So how about completing a few little steps that you can check off your “To Do” list?
Ask Dr. C’s receptionist for a copy of all your reports, including the surgical report.
Make an appointment with your PCP (for a day when you’re pretty sure you’ll have the reports) to discuss next steps.
Make an appointment with your OBGYN regarding Dr. C’s saying it’s a hormonal problem.
Doing these things now may give you more of a feeling of control, and a sense of hope, as well as start the planning for what’s the best next step.
Sometimes just being able to check something off the list is therapeutic. And if you are going to make progress, you’re going to have to get organized. Dealing with complex or rare medical issues often requires planning and strategy. Of course the irony is that when you are dealing with a complex or rare medical issue is the time when you are least resilient or in a state to plan strategy. We know.
Seenie from ModSupport
PS I don’t have Eagle, but I do have a complex rare disease which I cope with pretty well because I used strategies suggested by friends on my Ben’s Friends community.
Thank you so much! Ive actually started doing those things as you had said. Ive just been losing home and i cant stop crying. Everyone i know keeps telling me to pull it together n stop crying. Ive been hysterical since i found out i still have eagles. 4 years of this and im tired. I just wish i knew someone would help me. But i dont. And thats why i keep crying.
I keep thinking of how happy i used to be. N how much fun i used to have. N how i would be going to the gym. N playing outside with my daughter. And snowboarding snd riding quads. Nnlaughing with my friends/family. If i didnt have this. But i do. And instead my life has amounted to sitting in pain, dizziness, nausea. Miserable. And i keep crying.
I keep researching and trying to find some hope. Thank you everyone for being the light in this dark time. Stay well
im praying i can find someone to take these out. Not that i want surgery again. But i cant live with these symptoms. I beyond upset. I want to be better for my little girl. I dont know what i did to deserve this in life. Doctors have been known to remove down to the hyoid correct? I dont understand what happened here.
thank u everyone for your love and support over the years. I made a HUGE mistake by going to him.
