Problems with diagnosis/important questions

General
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I still have some problems with my diagnosis. Because I had neck fusion doctors seem to be confused about my symtoms. My cervical spine is not in the best shape, that's true, I got C-5/C-6 fused, but my neurosurgeon said that there is nothing more to do. At the same time he said that is impossible that I have neck pain beacause of elongated styloid.

So I have really important questions, maybe someone could give me some proffesional knowledge and share some experience.

1. Does any of you had only neck pain caused by eagle syndrome, without jaw pain, or ear pain etc.?

( I have a direct spot on my neck where the pain is localised, please check the photo, I marked it. When I am touching it sometimes pain goes up to my forehead )

2. Does any of you had lazy eye beacause of that? I have something like Arnold Syndrome ( that's what my physiotherapist said ). Sometimes I have one sided headaches , pain behind my eyes and that kind of things. My lazy eye is not all the time, I can noticed that when I quicly close my right eye and than open it and there it is for a moment. I also have some tingling on the right side of my head, from the back to forehead, near to my right eye. My neurologist said that it might be something to do with tregiminal nerve but he think that have nothing to do with my elongated styloid.

3. Does any of you had cracking sound in the back of their skull? I am still confused if it's instability of upper part of my spine or elongated styloid, but this sound is on the same side that my calcified ligament is and I just have a feeling that it's causing all my symptoms. ( I'm just irritated by doctors who asking me if I have throat pain, jaw pain, excessive salivation - I don't have those symptoms ). It is similar sound to clicking in the joints. Is it possible that my elongated styloid touches some other bone structures, like for example my spine?

4. Hyperacusis. Does any of you had that? I almost don't have it now, so I'm really confused if it was beacause of instability in my neck or after the neck surgery and now it's gone ( sometime I still have problem with that ) or what?

5. I wonder if during the surgery (if I will have one ) they remove the whole ligament? If so how I will live without this ligament, wich is important muscle in the neck and near throat. Or maybe they only remove the part of calcifed ligament, wich is actually a bone now, and separate it from the healthy part of ligamnent?

6. Basically I have these symptoms:

- Headaches

- One sided headaches

- Pain behind my eye ( sometimes both eyes )

- sometimes a little bit of numbness or tingling, or strange feeling like someone pinched my skin on my forehead, sometimes nose, and back of my head, generally on my right side

- occasionally numbness ( or maybe that's not even a numbness, it's more like something disturb sense deep in my throat and near to my tongue ) in my throat, or strange feeling of numbness of my skin in front of my neck

- hyperacusis ( now it's almost ok, but still not normal, and the important thing is that my ears are copletly fine )

- I don't have feeling of a strange body in my throat but I think I have this kind of feeling in the back my skull, in the neck.

7. Last qestion is about your experience with eagke syndrome. I hear all the time from many doctors that it's imposible that my symptoms are beacause of that, and the elongation proces is a really long time process, while I feel it started suddenly ( I've read that it might happen after some inflamation, for example surgery in throat area. I had one 8th january 2014 ).

I will be gratefull for your help and any inforamtions.

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I am so sorry to hear about your experiences with doctors. Sadly only you can decide what should be done with your own body and health.

One thing to remember “eagle syndrome” is something many doctors don’t know a lot about. Most doctors have done a number of surgeries. With that said, anyone who comes in with different symptoms then anyone else will say it’s not related.

If you have a X-ray done to confirm you do have “eagle syndrome” then you yourself should look up symptoms and other peoples stories also.

I didn’t know I even had it. I woke up one day and my neck into my lower back was numb. I called my chiropractor thinking I just needed an adjustment so I made an appt for the next day. The next day I woke up and couldn’t turn my neck at all the numbness got worse. I seen my chiropractor and he sent me for an X-ray that’s when I was diagnosed. The doctor I seen said it was impossible for it to make my neck go numb and make me unable to turn my neck but he said mine were the largest he had seen and said I needed surgery. After surgery I was able to move my neck again it took a while for the numbness to go away:

That’s why I say don’t let a doctor tell you your symptoms don’t add up! My doctor said he’s never heard or seen a case where a patient couldn’t move there neck or had numbness but after surgery he said it may have been due to where they were located in my skull into my neck that caused my symptoms.

My doctor also said during surgery they can tell which type you have. I can’t remember the names of it I’m sorry but if they were classified bones when removed then they will not grow back. If they are soft when they remove them they will grow back.

That’s the hardest part waking up waiting to be told which kind you had.

My advice seek more tests, do more research, contact all the doctors in your area that treat this and make an appointment with them see which one you feel most comfortable with also maybe seek a pain doctor also to help you cope and deal with pain.

I hope I was able to help a little if not I’m sorry. But if you want to talk more or have questions feel free to contact me. Good luck and I hope you feel better soon and get some relief soon

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HI : Pawel my symptoms are very similar to yours ,almost the same but I must say that I have pain in the corner of the jaw and along the lower jaw where the mandibular salivary gland is ,weird pain in front of neck like cartilage pains ,teeth pain , and I also have the pain you indicated in the photo , if I press on that spot I get all kinds of weird pains in front of my neck in my eye back of the head my throat feels itchy and scratchy sometimes roof of the mouth hurts etc ,etc !!!! Altough I don't know what is causing all these after many scans and blood tests , my right styloid is 4.8 cm and left 3.5 !!! I believe the styloids could be the cause of all your symptoms !!! do you mind if I ask what ct scan reports are ( length of the styloids any calcification etc,etc). I forgot to say that I also get terrible neck and shoulder pains and sometimes nausea!!! I am now waiting to see a head and neck surgeon and pray he can help me !!

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My symptoms are:

Discomfort / pressure in and around the left ear, down under the jaw, and down the neck. It is mostly in, but not limited to the left side. Sometimes the left side of my tongue hurts, or the roof of my mouth, or my lower jaw. During physical exertion, i can hear my heart beat in my left ear. Other times, I have trouble with my voice. After a cat-scan with contrast, my physician, an eye ear nose throat specialist, ( Dr. Stephen Dent, Encinitas Ca. ) told me that my Stylohyoid Ligament was calcified and it was putting pressure on the nerves and blood vessels in the neck. I have an appointment Monday to discuss treatment options but he said that it would probably have to be removed. My main concern is that the ligament is putting pressure on my Carotid Artery which could lead to stroke because as I said, during physical exertion, i can hear my heart beat in my left ear.

Two things to remember:

Nothing is impossible. Improbable maybe, but not impossible.

Doctors do not know everything and everyone is different.

I had gone through numerous treatments for condidtions I did not have till I found this doctor. He sat me down, went over the Cat Scan and bloodwork with me, wrote something down on a piece of paper, told me to research it, then let him know what I thought as this is what he believed is causing my problem.

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Thank you for your response and time guys. :)

Diva12688 your message is helpfull. I have few more questions if will be so kind to answer them:

one about the numbness, what kind off nubness you had? It was like stiffness, or your skin was numb? You had one sided eagle syndrome, yes? How long was your calcified ligament? ( are you symptom free now? how long ago you had a surgery? could you recomend some doctor who wouldn't be surprised of my symptoms? I can go States. :)

What are really the types of eagle syndrome. I have calcified ligament for shure. Do you know do they remove the ligament? I

Thank you very much in advance. :)

Tiagito78 I'm sorry that you are in this condition, there's nothig good about that I belive. Thank you for your response.

Do you have any problems with your eye besides pain? I am really angry because this lazy eye :/ Do you have the clicking and crunching sound on your left side?

My right calcified ligament is about 5 cm.

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Pawel I don't have any other problems with my eyes besides pain and some lacrimation , I believe the eye pains are coming from the neck muscles being tight or in spasm because I can sometimes press in certain muscles and when I do that it refers pain to my eyes right or left depending on the side being pressed ,clicking and crunching wise yes and I get those on the left side of my neck every time I move it but I don't think it has something to do with Eagles!! since you live Ponland you could perhaps travel to England and contact this doctor how is treating a fellow sufferer !! here is the link > http://www.spirehealthcare.com/manchester/our-facilities-treatments-and-consultants/our-consultants/mr-michael-patrick-rothera/

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Pawel is the problem your stylohyoid ligament or the the styloid process ?

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diva12688 how long were your styloids before the surgery ? were your stylohyoid ligaments causing you any problems at all?

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Pawel: Glad I could be of some help. I'll try to answer your other questions as best as I can.

My skin was 100% stiff and numb completely. From my head to past my shoulders pure numbness.

As far as I know (I may be wrong on this) you do not have 1 sided eagle syndrome. Granted i'm telling you what the two doctors I spoke with told me. They explained eagle syndrome is just like your body. Why do you have two arms, legs, hands, feet and eyes? You have two of those things just like you have two eagle syndromes growing. (Unsure if it's true or not.) However with that said I had two growing one on the right side the other on the left side.

If you go to my page and scroll down on there you will find a picture. My surgeon agreed to remove them in surgery and take a photo of them before they discarded them so I could see what they looked like when I awoke. I posted that photo on my page.

I was diagnosed after my xray on July 2, 2013. I had surgery July 31, 2013. My surgeon was Doctor Richard Nelson he is an ent surgeon out of Maumee Ohio. Minus the fact he didn't believe this could cause numbness and me to be unable to turn my neck/head after surgery he told me they were pushing on my nerves and that my symptoms then did make 100% since. I was very happy with him as a surgeon as he took a long time talking to me and my mom and answering every question I had.

I don't know a lot about eagle syndrome just what I was told by the doctor. There are two types: One calcified ligament which is where it's like bone growing. This kind can be fully removed including the ligament and it will not grow back. The other kind I cant remember the name of off the top of my head but I do remember the doctors telling me this kind is like soft tissue they can only remove as much of it as possible and it will continue to grow back. Sometimes on xrays they can tell you which type you have other times they wait and tell you after surgery only because some times a xray is misleading.

Hope I answered everything for you and if you have more questions feel free to ask.

Pawel said:

Thank you for your response and time guys. :)

Diva12688 your message is helpfull. I have few more questions if will be so kind to answer them:

one about the numbness, what kind off nubness you had? It was like stiffness, or your skin was numb? You had one sided eagle syndrome, yes? How long was your calcified ligament? ( are you symptom free now? how long ago you had a surgery? could you recomend some doctor who wouldn't be surprised of my symptoms? I can go States. :)

What are really the types of eagle syndrome. I have calcified ligament for shure. Do you know do they remove the ligament? I

Thank you very much in advance. :)

Tiagito78 I'm sorry that you are in this condition, there's nothig good about that I belive. Thank you for your response.

Do you have any problems with your eye besides pain? I am really angry because this lazy eye :/ Do you have the clicking and crunching sound on your left side?

My right calcified ligament is about 5 cm.

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Tiagito78: If you go to my page, and scroll down I posted the picture the doctor took during surgery right after he removed them. The photo shows what they looked like and how long they were also. Before the surgery the only problems they had caused me was numbness and unable to turn my neck/head. After surgery just the recovery stage was hard. After that I have not had any problems since. Hope that helps!

tiagito78 said:



diva12688 how long were your styloids before the surgery ? were your stylohyoid ligaments causing you any problems at all?