19 year old - 3 year story - help me

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Well hello everyone! I am totally new to all this so excuse me if I say anything wrong or something.
My symptoms started about 3 years ago when I was 16. Woke up with a water like fullness feeling in my right ear and hyperacusis out of nowhere it was a normal summer break. That lasted about 2 3 weeks and then subsided I guess on its own, I used some ear drops and some stuff but I think it resolved on its own…from that moment that day I lost some hearing and have been having EAR issues ever since. ALL types if symptoms with my ears you name it I had it (ringing, deafness, fullness, hyperacusis, weird sensations etc). So I just accepted that like “Oh okay I have ear problems and I’l live with that somehow…” of coruse I was wrong. After about 6 months so late 2019 I started having some balance issues drunk like feeling disorientation and all that equilibrium shit. Again from that random day when I felt that I have been having problems with balance ever since to this day. Then covid happened and in all that mess a year went by with no new issues from what I can remember (2020 feels like I slept through it). Fast forward 2022 came, I started having some autoimmune like symptoms like MAJOR LIKE BIG TIME fatigue like never before and a really WEIRD but SCARY symptom that came in November OUT OF NOWHERE one night is HOT RED EARS. So to sum up everything (I dont wanna bother you with my whole wide story to read) right now I have developed or gained a pretty high number of symptoms which are mainly neurological…here is a list

  1. Ear problems (ringing on/off, hyperacusis, deafness, fullness, pimples always around ears earlobes etc.)
  2. Balance/equilibrium/vertigo issues ALWAYS
  3. RED HOT EARS
  4. FATIGUE/DISORIENTATION
  5. PRESSURE around my head I dont even know how to describe it
  6. Brain fog on off
  7. A hard lump behind my jaw/ear that showed up randomly…(thought it was lymphoma…)
    So I think thats it. Or at least what I can remember at this exact moment. Apart from that of course I have been to TONS of doctors, neurologists, all kinds of ENTs, did MRIs scans all that…like many I read they always said you’re all good healthy and tried to tell me its psychosomatic…which I KNOW its not because all my life I’ve been a active normal person and out of nowhere started having these neurological issues. I am at a really difficult spot right now and have been. Contemplating suicide EVERY SINGLE DAY. Through these 3 years I thought at first it may be Menieres then it may be Thyroid problems such as hashimoto then something else then Relapsing Polychondritis (red hot ears) which is probably the scariest things I came across during all this time I tried to diagnose myself, then I thought it may be MS so you get it. Its really frustrating living like this EVERY DAY suffering. AS A F***** 19 YEAR OLD. I am from Croatia, healthcare here is shit…they have absoultely no money for any possible travel for me to see some US or some other doctors and treatments tests whatever. Now I dont even know what and why I tried to write in this post and whats the point of it but I guess these are the questions I want an answer to if possible.
  8. How much does the surgery cost at Dr Hepworth, Hackman, Annino and Cognetti? I read that these are the big four the best. (including staying and everything) and can I even be treated in US as a European citizen (EU)?
  9. Does this group allow fundraising since thats my only option to do anything basically thats why Im asking the first q, my hands are tied and am REALLY close to ending this shit
  10. I dont know how but if you are willing to help me in any way contact me please and yeah…
    I know I should do the scans first and all that but I just currently dont have the money and thats it.
  11. To summarise everything I just wanna know if this is it? Do I just have to accept this whats happening to me everyday and hope for a miracle or something because I just dont see any way out of this and the worst is YET to come.

Thank you
Edit: Oh yeah I forgot to add that I have issues with TMJ and all that crooked teeth and jaw…Also I read a lot about Upper Cervical Care and even DTR therapy functional neurology medicine all that just so you know haha one day I’ll try those maybe…

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I feel for you with these health issues & not a decent health care system, especially at your age…reading about Relapsing Polychondritis must’ve scared you, it doesn’t sound good. Quite a few members have had sensory issues/ strange sensations with their ears, & the head pressure, vertigo etc could potentially be jugular compression.
Have you had a CT scan at all? I can appreciate that you’re getting desperate for treatment & feel you need to travel elsewhere, & that money’s an issue, but to get a consultation with any other doctors you would need a CT for them to view & a radiologists report. You’ve been able to see doctors in Croatia presumably; it might be worth trying an Otolaryngologist/ Skull Base surgeon, or a head & neck cancer surgeon if you’ve not tried that already? And ask for a CT- you could print off some of the research papers which support your symptoms for the doctors to see? I don’t know otherwise if another EU country would be a better bet for you to try rather than the US?
Hopefully some of the US members who’ve paid for surgery can let you know the costs. I’m afraid that we can’t help with any costs, or with a fundraiser for you on here, unfortunately we have many members in the same situation unable to get treatment in their countries, it would be too much to have on here. Would you be able to try your own fundraiser with JustGiving or something in Croatia? I think one of our members in a different country did that & was able to get some media coverage as it’s a rare condition…
Have you got any support from family & friends? We’re happy to listen here, and will do our best to support you but I know it’s not like having someone close…please take care of yourself and if you are feeling suicidal please ring the numbers in the links below:
Crisis Help Line - Support - Living with Eagle
Croatia Suicide Hotlines - Suicide.org! Croatia Suicide Hotlines, Croatia Suicide Hotlines, Croatia Suicide Hotlines, Croatia Suicide Hotlines!
Will pray for some answers for you & for away to get treatment, and sending you a hug in the meantime :hugs: :pray:

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Hey HrvojeBozanovic,
Firstly, Welcome to Ben’s Friends.
Secondly, BIG + to EVERYTHING Jules has posted.
I don’t have Eagles. I have a neurological issue which has required multiple neurosurgical procedures.
Many of your symptoms sound very similar, but I am somewhat surprised you’ve had MRI’s and nothing been identified. As Jules has suggested, a CT scan (with contrast) would be advantageous and is considered the ‘Gold Standard’ for Eagles.

Unfortunately, your ‘psychosomatic’ diagnosis is not unusual, especially for those of us with rare conditions. It often seems that when the medicos are unable to clearly identify an issue, they put it back on us, the patients. I went through all of this for over 20years before a confirmed diagnosis was made, they even locked me up in a psych ward because ‘You just can’t be having pain like that…’ but I was. Add 5yrs, then they made a true diagnosis “ohh, look what we found…” as if it was all something new. I’d been telling them, but no one listened.

Then they operated and the surgical journey begun. I was told ‘All Fixed’, only it wasn’t. I queried their theory repeatedly and one of them came out with the line “Ohh, but you have a history of… (add psych diagnosis) …it could be that.” At this point, let’s just say, I’d had my fill of medicos and their pseudo diagnosis/theories and my cup it overfloweth and I turned to him looked him directly in the eye and said “I also have a history of dealing with know-it-all medicos… …it could be THAT!!!” He got the message. Three months later and I was again having further neurosurgery.

NO!!!
You know ‘YOU’ better than anyone and if something is not right you must speak up. Even if it’s just so there is a documented history of your symptoms reported to your PCP/Dr/GP. For years I shut up about my oddball symptoms for fear of just being labelled crazy (again). So, I’m driving down the road one day and suddenly I couldn’t see. I called my then girlfriend who took me off to the hospital for scans and the Dr says to me ‘So, why didn’t you speak up sooner?’ I HAD SPOKEN UP and been shutdown, but it wasn’t documented anywhere, concisely. Sometimes our information can be taken as hearsay but if a dr/pcp/gp tells them the same things, often it holds more weight than our reports.

As for requesting donations, that is something that we do not allow on our network. As you could well imagine, we have many members who could very well do with assistance and if we allow one, then we’d need to allow all. For this reasoning we have a policy of not allowing requests. Sorry.

Merl from the Modsupport Team

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@HrvojeBozanovic -

There are several types of medical specialists that operate in the area where the styloids are & most are what we call “skull based surgeons”. Often they are cancer specialists. The typical specialties are Ear, Nose, Throat (ENT), Maxillofacial, & Neurosurgery. Even if a surgeon hasn’t specifically operated for Eagle Syndrome, if (s)he has done surgery regularly in that area of the neck & has had to remove styloids, that may be sufficient experience to help you. Are you able to look for specialists of those types in your country? We have some doctors listed for Italy as well which would be much closer to you than traveling to the US so maybe worth contacting someone there?

@Jules & @Merl have given you great advice. Fighting to be heard is very worthwhile. Printing some of the research papers that link the types of symptoms you have to ES (link under the General Category on our home page) & taking them with you to appointments you make can help you make a case that is more credible to doctors you see.

I will also pray for you to find the help you need more locally so you can start healing rather than hurting.

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I’m sorry the original post was deleted somehow. Here are two research articles from Croatia I’ve posted before. Maybe one of the Croatian doctors authors mentioned can help further:

https://onlinelibrary.wiley.com/doi/abs/10.1002/jcu.22524

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Thanks for that info @TheDude; I hadn’t seen any papers by Croatian doctors, not sure if I missed this one or if you’ve just found it?

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My pleasure. I just found em. I think they weren’t posted here before, Jules.

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Hello, a lot of your symptoms sound like mine, which is the venous version of Eagles. And I did not have long styloids, the type of Eagles more likely to be recognized, it was their angle plus a mild head/neck injury. The Italians like Dr. Paolo Zamboni have been researching the jugular vein problems and solutions for a decade or more. Perhaps look into them? For the venous Eagles, and again many of your symptoms sound like mine, a CT of the jugular veins is the best, called a CTV. It’s a particular protocol that the technician does, and the doctor must specify in the order. An otolaryngologist prescribed it for me, but I had to push a lot to see him rather than a regular ENT. And then even though the radiologist clearly said the styloids were impinging the jugulars, the otolaryngologist did not think it was a problem. Good luck, and please recognize that mood disturbance is a recognized part of the condition, per the esteemed British expert Dr. Higgins. His recent journal articles also highlight that the condition can cause chronic fatigue syndrome. Courage!

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@HrvojeBozanovic Please know that you are not alone. There are so many of us who are suffering, and on top of suffering, we are having to advocate for ourselves. You and I have so many symptoms in common like the lump behind the ear. I had a hard lump on my left mastoid that turned into what I thought was an earache. That was followed by incredible pressure in my head and crushing fatigue. It also sounds like you might have erythromelalgia. It causes my feet to turn bright red and get burning hot, so much so that it feels like my feet have been struck by lightning and I’m walking on hot sand and glass. I understand that erythromelalgia causes the ears to turn red in some cases as well. Aside from all that, there is the matter of depression. I am on the tail end of 3 years of a deep depression that was/is essentially drug-resistant. I now understand that depression is another part of Eagle syndrome that has to be managed daily like every other symptom. All this is to say that what you are experiencing is not psychosomatic. Your story is so much like every other experience of ES that has been shared here on this forum and elsewhere. I am currently in the process of appealing my insurance’s decision to deny me out-of-network treatment. Push come to shove, I will have to reach out to my community to help me raise funds so that I can finally receive the care that I need and deserve. As someone has already mentioned, there are some wonderful doctors in Italy, particularly Rome, who have authored some important papers on the diagnosis and treatment of ES. I hope and pray that you can get the care and support that you need. Please don’t give up on your life. You seem like such a bright and intelligent person, who has so much more living to do. Courage, young friend. Courage.

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Hi there @HrvojeBozanovic , I read your story and as a mom with a 19 and 20 year old son, i felt for you! I was diagnosed with ES in May of this year after dealing with symptoms for about 9 months now. I cant imagine if I had been fighting this for three years and at 16 years old… I want you to know, as a mother, that your life has meaning. You are needed and wanted here
Please reach out to get help for your mental health
This wont last forever and there are better days ahead. For all of us… For you sweetie. Hang in there and take things one day and step at a time. You’ll get through this. Look at how far you’ve come already
You’re doing so good and are being so brave. Please keep us in the forum updated with how things are going
We’re always here to listen

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