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Eagle Syndrome - Online Support Group

Bilateral calcified stylohyoid ligament


#1

So I’ve been dealing with ES my whole life, although I only learned within the last month that it was ES. I’ve spent a lot of my time going in and out of ER’s complaining of everything that I now know was from my ES. But all through this my pain and agony was dismissed by doctors and loved ones. My wife thinks I’m a hypochondriac now because of this, and she thinks that if I just have some tougher mental fortitude I can get through it now. Even more of a problem, my doctors ignored me when I said the radiologist missed two 1.5 inch bones in my throat. And would continue to think nothing of it. I only have health insurance through the VA(veterans affairs), so I only have ONE hospital to choose from, and if they choose to not help me I’m SOL. Which seems to be the case currently. My ES is Vascular, and I also think there might be some run ins with the VAGUS nerve. Since throughout my life I’ve had random bouts of pain in my chest, hyper sweating for no reason, and intestinal issues similar to irritable bowel syndrome. But on top of that i feel like my brain is slowly being choked out constantly! When my doctors finally saw the calcified ligament he diagnosed me with dysphasia! Even though 4 days prior I was in the ER for stroke like symptoms minus the unilateral weakness. But what they don’t get, is if I stroke out it’s most likely going to be bilaterally. I’ve spent the last month in a spell of confusion and memory loss where when I’m driving I forget where I’m goin about once a minute. I’m too terrified to sleep. Earlier I thought I’d have a heart attack but I know if I go to the hospital their just going to tell me I’m fine and send me home. At this point I’m very seriously worried I might not make it to my appt on Thursday if this keeps up like it is. It really didn’t help that they made me feel like I’m insane whenever I brought up I have ES. Which made me do the stupid thing and feel around in my neck so I can feel this hard object in my throat. That was 4 days ago and every day since has been worse and worse. I just wish I could get to Dr Samji and have them removed before I can’t remember how to get home. I’ve just never met such heartless doctors as I have in the VA. I’m 90% convinced they’re hoping I die so they don’t have to see me come into the ER anymore. Today they called a social worker to calm me down because I told off the doctor who said it’s impossible for the ES To cut off blood to the brain. What would I know I’m only living it!


#2

Alohaaaaaa my name is buzz eagle and I just had both sides removed in the last four and a half months it’s the worst pain ever but there gone out of me so my advice to you is come up with a plan to get to Dr. Hussein Samji in San Jose and get them out of you no matter wat it takes or costs the V A is a cruojoje and they want us to suffer and die even take our own lives that way they don’t have to pay for it or us after they broke us so v a won’t help they will hinder and hide the fact you have it so Dr. Samji start a go fund me on your behalf Isaiah_30_40 o. This firm is the lords angel and Jules also love you Jules and Isaiah they’re a blessing so don’t give up the good fight don’t take no for an answer you no your body and when something is wrong so gofund me online Facebook Instagram and tell people your story they will help it’s human nature at its finest amen sir or ma’am and know there is life after eagle syndrome I’m living proof and like I said Camino ear nose and throat in San Jose California ask to speak with Kimberly she is Dr. Samjis personal nurse and is the most amazing person besides the dr himself I’ve ever met so all the people involved with this dr and his network are out to help us give them a call 4082276300 or ■■■■ so good luck amen god bless you and your ohana and journey Alohaaaaaa and mai ka I buzzzzzzy the buzz eagle Alohaaaaaa


#3

Thank you for the words of encouragement. I’ve been in contact with Kimberly and it took a lot of convincing but i finally got them to scan my neck the right way. and i have the CD of it. now i just gotta get the money to get there.


#4

I can only suggest if you can that you look at the research papers showing people who’ve had strokes from ES, scary reading I know, copy them & take them with you. There have been proven cases & published articles, so you’re not imagining your symptoms…Sometimes this has helped members to get their doctors to rake them seriously, although not always, I’m sorry to say.
I’m from the UK, so we have a different system here; are there any veterans organisations/ charities who might be able to help you with funding to see Dr Samji otherwise? Not sure how your political system works either; in the UK we have an elected Member of Parliament who can take up cases for people- does anything like that happen in the US? I think that there have been a few members who have had surgery through military hospitals- I’ll try & have a look, as maybe you could get a surgeons name for your doctor to contact. & if I get a chance I’ll look up some research papers for you.
Hang in there & keep strong- we do understand how you feel even if we can’t do anything to help you… Before my surgery I was having some really scary symptoms, felt like I was going to die, so I do know what you’re going through. My faith got me through it; I’llbe praying for you too.


#5

Shanef89 hi can you explain the random pains in your chest? I get heart/ chest pains too for no reason and don’t know if it’s related to my ES and it’s stopping me from surgery as I don’t want to go under anesthesia with a heart problem nobody knows about.


#6

id love to July123! before i exacerbated things by poking and prodding my neck, it was always just a few minutes of intensely sharp pain in my chest. but now, it feels like a weird weight on my chest over the sternum (center bone of chest) but its weird because if i lay on my right it will feel better in the sternal region but then feel weird and throbby on my left side of where my heart feels in my chest(if that makes any sense), then if i lay on my left side it moves again and that one to me makes me feel like im going to die not super painful and impossible to describe, but when im laying there trying to sleep on my left i keep feeling these subconscious dreams, no thats not the right word, flashes maybe telling me i got move now, switch positions, stretch real quick, or i might not wake up. that side is also accompanied by arm tingles, sorry gotta go getting a bit delirious ill add more when i feel it happen again, promise. but mine was also being contributed to by my adderall since this disease makes me have an attention deficit. too bad they don’t help. but you should also look at your medications and make sure that none of them have a stimulatory effect because that can raise your blood pressure which can cause your heart/chest pain. mine was up to like 175+ (when the doctor who i saw 4 days prior, to this ER visit, told me its impossible for eagles to compress the internal carotid. he decided to ask me what was wrong from when he saw me last, during the moment im getting my blood pressure taken. i thought i was going to have a heart attack, while im telling him off for his idiocy), but check your meds and ill get back to you with more symptoms when i can remember them :wink:


#7

Those are some good ideas to pursue, ill look into them all. you all are great! I’ve never felt so supported before, its always been me shouldering the weight dealing with this while no one understood/believed me. thank you!


#8

@Shanef89
I understand and believe you…and you are not crazy. Glad you found this group as well, sure keeps me away from the dark. I too am just getting diagnosed after a good portion of my life but finding someone to help me is quite difficult as well. As soon as my neuro guy gets the new MRI he wants, I am going to recruit him into helping me get a surgery date with Dr. Samji. I wish peace for you as much as can be while you battle this crazy thing for just a little longer. It will not happen overnite, but keep moving - one foot in front of the other. You’ve got us to vent to - unbelievably helpful you will find.
Fortunately I have insurance and will be covered with Dr. Samji - just gotta deal with the expense of the trip and the stay for a few days after. And, I have bilateral also so 2 separate surgeries…only external for me! One step at a time (and baby steps at that). For reference, I was diagnosed in April and still dealing with ignorant doctors…even the ones that claim to know about this thing!!!


#9

And now i feel like i annoyed Dr Samji. i feel like an idiot. this last weekend i have never felt so scared, and my VA doctors wouldn’t listen to me. so i emailed kimberly kind of updating my status. now i get an email saying due to the emails i sent i must wait for Dr Samji’s reply. this is never a good sign, or at least ive never been pleasantly surprised in this situation. ive never felt so down this sucks.


#10

july123, some of the pain thats hard to describe, feels like a strip of my heart is weaker for a second. when im laying on my left it feels week and almost “rippling” on the left side of my heart. but other than that my chest pain just feel like theres razors between my ribs or like my lungs are being pinched when i inhale. i hope this helps


#11

I’m sure you’ll hear soon, hang in there! I know it’s scary having to wait, we’ve all been there. The chances of anything really bad happening through ES is really, really rare. :hugs:


#13

Hi Shanef89,

Have you heard back from Dr. Samji. If so, what did he say? Did he set you up w/ an appointment to see him?

I’m sorry your symptoms are so severe & scary at this time. Having those styloids removed will make a BIG difference.

I hope you’re making progress in getting your ES taken care of!


#14

Yes he did, his answer was that he is incapable of relieving my pain and suffering. As he put it? I don’t do surgery of the styloid process if it is under 27 mm, but what he doesn’t seem to care about is the ossification directly below the carotid canal. Or the fact that my stylohyoid ligament is over 70% ossified and hurts like hell daily! But he basically said “i don’t care about you I won’t help” I believe he has the ability and skill to help me, he just won’t because aparently he knows more about my suffering than me, and apparently it’s not that bad and I should just man up. I’m so pissed. I just hope the ENT near me doesn’t say no as well, I can’t take that right now. It would be like condemning me to death. Which at this point I’m becoming ambivalent towards.


#15

WOW! That’s CRAZY! I thought Dr. Samji also paid attention to calcified s-h ligaments since he removes them w/ the styloids so they won’t calcify or won’t calcify further. Did you talk to him about your ossified ligaments, & he said he wouldn’t help you unless the styloids were also elongated?

I guess I learned something new about Dr. Samji today… I’m REALLY SORRY!! I do hope you find someone local to take care of you. It would be nicer for you to be closer to home anyway. Look for or ask your ENT for referral to a skull-based surgeon. They’re the ones who operate in that area of the skull & neck regularly & would be familiar w/ doing a safe surgery in that area. There must be at least one surgeon w/ that specialty in LV.

I’ll be praying for you to find the best doctor for your situation & for surgery or therapy or whatever would be best in your situation ASAP.


#16

Really sorry to read that Dr Samji won’t operate, that is a blow to you…I hope that you can find someone local to help- as Isaiah says, a skull base/ otolaryngologist may well be able to help… I’ll be praying for you, keep strong & keep fighting, lots of us here have had a long wait and battle to get treatment, so please don’t give up hope…


#17

Shanef89 - Another option would be Dr. Milligan in Phoenix, probably not a lot different distance-wise than Dr. Samji’s office. He’s an experienced ES surgeon & you might find his level of compassion different from Dr. Samji’s. Every doctor is different in patient approach, & it’s hard to always find the right fit personality-wise.

I’ve attached the US ES Doctors List to this email so you can easily access Dr. Milligan’s information.

EaglesSyndromeUSDoctors August 2017.docx (38.3 KB)


#18

Wow, thank you for the support(Wendy and Jules) it means the world. I’ll keep my head up and press on. I’ll look into the Phoenix doctor it’s not too far maybe 5 hour drive. I can do that. Or rather my wife can do that. I want to say more but today is one of those super crappy days, but know I appreciate you love more than you know!


#19

Yes, there are other doctors. Dr Samji would not operate on my left side bc I had intraoral surgery 5 years ago. The styloid remaining was 3.05 cm and a large part of the stylohyiod was left after 2.8 cm removal. Also, the remaining 3.0 was thick
Dr Samji would do the Right side, which is 5.1 cm, but I knew most of my pain and the thick lump in the left side were killing me.
Dr Samji is great,but he chooses his patients based on his criteria. That is actually good. He does not operate on anyone whose problem is out of the scope of his ability.
I think at least two members had very good results with Dr. MILLIGAN.
We all know that size of the styloid is not the only factor. When Dr. Nuss saw me in August. His first comment was the left styloid is impressively thick. Even though the right was long, he recognized why I had so much pain on the left.
Unfortunately, we still need to match up appropriately with our doctors. They are human, too.


#20

We’re always here for you, Shanef89.

I’ll be praying for you to find the right surgeon quickly.


#21

UPDATE: My ENT just got back to me with some extra unsettling news for me. but at least people are finally taking it seriously. turns out that my ligament is completely Calcified from tip to tip. i don’t know how its been missed until now. and even though I’ve been complaining of certain neurological symptoms he’s now saying that theres a vascular issue as well. and im like “Ive been saying this from the beginning but no one would take me seriously.” but he doesn’t feel comfortable trying to remove it so he’s referring me to someone named Ryan Osborne(don’t know if i spelt it right) in LA. he thinks ill also need a vascular surgeon. as he saw some plaque build up probably from the compression. So they’re finally ordering a CT with Contrast for the carotid. anyway i feel a little bit more vindicated now that i learned that its even more severe than i thought. ill keep you posted on the happenings. oh and the symptoms have been getting stronger but i don’t want to think about them because that makes them worse.