This is tough, I really feel for you, hope that you can summon your inner strength, & keep fighting to get yourself well, so you can do some of these things with your little girl…hugs to you
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We totally get what you’re saying. Completely.
The rest of the world seems to think that when you have a medical problem, you go to the doctor, they fix it or you take some meds and you get better. We rare disease peeps know that it is not that simple: we have to plan strategy, press on when we’re feeling like s**t, ignore the pain (even when we can’t), and rally our allies. It’s a tall order for someone who is suffering. But that’s why you are here. Lean on us.
Good for you, getting some of those things done despite how you feel. It may not feel like it now, but the payoff will come.
What would happen if you summoned all the strength that you can and you went and did something fun with your beautiful baby, despite the rotten pain you are suffering? It won’t be much fun for you, that’s for sure, but the sound of her laughter may give your spirit a tiny boost. What do you think?
Thinking of you
Seenie
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Please keep holding onto the knowledge that determination will lead to answers. I feel for your struggle and the stress this must place on you and your baby girl. This disease is so crazy!
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Tears can be healing. You’re in deep grief right now & tears are often the human response to grief. Let them flow & ignore the criticism of others. The sun will come back into your life one day & this will all be history. You will have learned some valuable lessons you can share w/ others & will make some dear friends along the way.
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Cupcake, so sorry to hear about your horrible experience with Dr. Cognetti.
There is no excuse for a Dr. to behave that way!
I had one side donw with Dr. Samji one month ago. I got the “Operative Report” from the surgery which details exactly what was done and what was removed. My calcified ligament were removed.
I know Dr. Samji is a long way away but he does do phone consultations for $350 if you send him your CT Scan on disk. Insurance should cover it if he is on your plan. If not $350 a small price to pay to have an opinion and ease your stress and anxiety. I am so sorry you are having to go through this and dont have the support from your doc. Ive been there and I know how it feels. Hang in there and dont EVER give up! We are all here to support you.
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Cupcake, I’m so very sorry that you had this experience and are also having such bad symptoms. You have already gotten great advice from others, and I’ll just second those comments. One other idea is that as I read this thread it seems like you are suffering both from the ES symptoms themselves and from your understandable emotional response to the medical problems, and those two parts might have somewhat different treatments. While you work towards a treatment for the neurologic symptoms, I wonder if you want to also seek help with the very large emotional burden that you are carrying. I definitely felt really desperate prior to my first surgery as I was quickly becoming disabled by my symptoms and I can resonate with that part of your story. I always think that the emotional response part makes life that much more difficult and also probably makes our ES symptoms worse. Fortunately there are excellent treatments for the mental health part of things that can be hugely helpful even as we look for answers to the physiological foundations of our symptoms.
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Hi everyone. I was turned down by samji. His assistant said he was not taking on my case bc my styloids were removed. I asked about the calcified ligaments and she said she didnt know and that was all he said. I am very discouraged and feel very ill. Im saying a lot of prayers. Thank you all for your support. 
I am praying some dr will help me as i am struggling with daily living. I am constantly naushis, pain etc.
Oh no! I am so sorry Cupcake5. How upsetting not to have learned more from this consultation. Are you on medication to help with nerve pain? If not, perhaps this would help to bridge your symptoms as you work to find answers to the primary cause of your pain.
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Oh no cupcake. I am so sorry that he turned down your case and the nurse wasn’t very helpful! Did you send him a CT scan? Will he not even do a consult over the phone with you? I don’t know all the circumstances but sometimes doctors don’t want to go in an clean up others doctors work. Dont give up! Try other doctors. Hang in there…we are all here to help and support you. 
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Hi Everyone. I wanted to post an update for you all. I had revision surgery at UNC in NC with Dr Hackman. He removed both sides externally through the neck down to hyoid. He said the area was very inflamed when he went in and he removed some scar tissue from my previous surgeries. I am now 3 weeks post op and the following symptoms have gone or are better: choking/gagging feeling, pain in neck/throat, severe presure on right side of face/eye.
I still have ramaining symptoms: some pressure dry feeling and eye blurriness in right eye, heartbear whoosingn sound in left ear, stomach issues (sibo), fast heart rate, pressure in center of my chest, seeing my neck pulsing on both sides, slight phlemy cough ive now developed, shortness of breath.
Im afraid ive developed a heart condition. Ive had a fast heart rate since the start of eagles 4 years ago. Its very startling and i have trouble sleeping with it. Noone has been able to help me so far. Drs always keep brushing me off with eagles. I am going to go to the ER. My daughters 1st bday party Is today. Im trying to make it thro then im going to go to the ER. I honestly think im having heart failure. Eagles has caused havock on my whole body n after 4 years i really believe my body is giving out. I know everyone thinks i have anxiety and im over reacting but i really dont think i have much time left. Im scared to leave my daughter in this world without me. She needs her mom. I want her to know how much i love her. I keep praying someone will take me seriously and help me. I cant keep suffering like this anymore. This heart issue is the most terrifying symptom. 
BrooklynGirl had some difficult issues post-surgery, related to the vagus nerve. If you search for her posts you’ll see her journey, it did settle with time. It’s early days for you still, hopefully this will settle with time…ES can upset the vagus nerve & so cause some arrhythmias, it coud be that.
I hope this settles & that you’re able to enjoy spending time with your precious little girl. Focus on the symptoms which have improved, & see how far you’ve come. Hugs & prayers for you…
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Thank you. I am at the ER. I am terrified. My blood pressure n heart rate r very high. My blood pressure never been this high before. Im scared.
Thinking of you, & let us know how you get on, It’s easier said than done I know, but the anxiety you’re feeling won’t help, that will raise blood pressure & heart rate too…
Thank you so much for your kindness and support! Eagle syndrome has been a nightmare for me. Especially for someone who doesnt handle health issues well. The ER diagnosed me with tachardyia but they dont know why. The tests came back ok- chest xray, ekg and bloodwork. So they sent in a referral to a cardiologist. They said the neck pulsing wasnt normal but they didnt know. They said i had a lot of work done on my neck so to see the cardioligist to see if they could figure out whats going on.
I hope that they get to the bottom of this, vagus issues are possible after surgery, if it’s irritated, I would mention this as a possibility to the cardiologist. Did it happen after your first surgery?
Okay i will! Yes i had heart issues after my 2nd surgery with cognetti (left side). They gave me beta blockers. Today my nerves on the right side of my face like freaked out i had some pains n my eye started twitching. N i had a dizziness feeling of passing out episode. Ugh im trying to be patient in healing but 4 years of this ive had enough. Im hoping the 1.6cm styloid on the right side isnt causing any issues. I have way more issues with right side then left.
I’m sure it’s just healing going on, I know that it’s hard to be patient but healing can take a year, it’s too early to be panicking yet…I hope that the appt helps, let us know how you get on
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Cupcake,
As others have indicated, Eagles can cause vagus nerve problems however you may have an underlying case of dysautonomia or POTS (Postural Orthostatic Tachycardia Syndrome). I also wonder if you still have some scar tissue or swelling in there compressing a nerve(s). I suggest you have them do your blood pressure and heart rate laying down, sitting and then finally standing for 10 minutes. If the heart rate jumps more than 40 bpm while standing and you almost pass out while standing, it could be a sign of this or rule it out. My daughter has POTS and often the tachycardia is diagnosed as anxiety when in fact it is not. Its your body reacting to the nervous system being out of whack. Good luck cupcake and keep us informed. Not to be morbid but as the suggestion of a friend prior to my eagles surgery, I did a living will that would take care of my daughter if something happened to me. Since she is disabled from her medical condition, I have done a variety of things in my living will to assure she will be ok.
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Ive had that eye twitching myself. I along with other docs determined that it is related to the trigeminal nerve bundle in front of the ear. I have TMJ and its all connected. As an FYI, my ES started ramping up on one side and then shifted to the other side. I went for the worst side and now moving on to other side. Our bodies do all kinds of adjusting to adapt to the pain.
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Thank you everyone. I made a cardiologist apt for october. Thats the earliest they could get me in. I feel better minus the heart issues n blurry right eye. I didnt have these issues after my first surgeries. Like i had a fast heart rate but i didnt have this neck pulsing thing n i just feel unwell n chest tightness i cant explain it. What causes her POTS? do you know? The neck pulsing and just feeling such a strong heart rate scares me. Like i dont feel right. I cant explain it. I really dont think im going to get any answers. Noone understands eagles. Also i did have a lawyer draw up a will/trust he just mailed it to me. I need to review it n go in n sign. Theres just noone i really trust with my daughter. I need to be here for her. 
im scared.