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Eagle Syndrome - Online Support Group

Dizziness; get me off this merry-go-round!

Hi Team ES. Obviously, having an abnormal styloid isn’t something that has grown over night :wink: but why now do the symptoms start? I’ve always had the sharp- shooting- fire -dragon- tongue- numbing- pain when I trun my head too fast, but now the dizziness and ringing ears have joined forces to werak havoc inside my head!! Anyone else have these symptom? Any tips to slow down the merry-go-round?
Ps. I’m a 40 year old washed up triathlete who enjoys playing polo when I’m not training for a race. Bouncing around on a horse and training in a pool and turning my head to take a breath (kinda important) is not the most enjoyable experience right now. I wonder if I can just wear a snorkle for my next tri?

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Hi!
I had ear pain & fullness, pain turning my head & nerve pain in teeth & jaw, all built up over several years, but the dizziness & head pressure came on quite quickly. At the time I was doing alot of cycling, & developed a slipped disc in my neck- I think possibly from the position when using my road bike. I think that the disc bulging was maybe enough to shift things slightly inside my neck & cause jugular compression, & coupled with the exercise increasing blood pressure so increasing the pressure in compressed veins was the cause of the sudden vascular symptom onset.
So I’d guess for you that the exercise is putting the same pressure on blood vessels, whether arteries or veins…as well as the position of your neck when riding doesn’t help! I got to the point where the fun of riding was gone & I gave it up. :anguished: Hopefully you don’t get to the same point!

Hi Jenna,

Your symptoms sound terrible and complicated. Locating the source of dizziness is a very tricky thing indeed as it can come from many places of which ES would be one possibility . Others usual suspects include dysfunction of the upper cervical vertebrae, inner ear problems like BPPV, concussion etc. all of which can trigger dizziness by moving your head. The piece about your tongue may be related to the vagus nerve but likely more so the hypoglossal nerve which is found more anterior to your ear, so further away from the styloid. Have you had any testing to see if you have ES? Seeing someone to rule out your upper cervical spine and inner ear would be a good idea. No doubt your super fun activities are aggravating things…darn.

Hope this is helpful, wish you the best of luck!

Thanks for getting back to me! Sure beats surfing the net in search of answers. I have seen a neuro for these symptoms and he did a full work up, it wa spretty cool all the images they took. After 3 different MRI/a they then popped me into the CT scan. The Dr suspected a vertebral dissection and from then on, the focus was only on my veins. Enter…the red herring. Good news, my neck, cervical spine and brain look pristine. Bad news, both the radiologist and neuro didn’t take a look at the bony structure on the CT because the potential dissection was like Christmas coming early for them! Last week, I called the neuro and ask him to review the CT again and low and behold he says I have a “prominent” left styloid. (I’ve always wanted to be prominent in society) so, now I just need to find someone in South Africa who can maybe do another scan and have a look at me. Ironically, the guy down in the Eastern Cape listed on your forum was the same plastic surgeon I used 10 years ago for something waaaay better and more exciting than styloid removal. :slight_smile: So hopefully he will take my case, who knows I might get my styloid replaced and a bigger bust in one fell swoop!

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Jenna

I feel your pain. I have been getting dizzy a lot lately. As far as why and when these symptoms start is anyone’s guess. I started getting my symptoms last Christmas and they have continued to evolve. The ringing in my ears is a new one that recently started. Just when I thought the pain could not get any worse, I started getting a new pain even worse then the nerve pain.

Over the last three days, I have been getting this terrible stabbing pain that nerve pills will not get rid of. It feels like someone is sticking ice picks in my neck, cheek bone and in my ear. The pain is brutal and so far, hydrocodone is the only thing that helps. Of course after 6 hours it comes back. Last night I put ice on my neck for about three hours which did manage to make it go away. I’m positive it will be back soon though.

Mine is so bad that not only can I not turn my head in either direction, I can’t raise my head up straight. My head has to be down looking at the floor at all times. This has caused me additional neck pain.I wish I knew why these symptoms came on so suddenly and why the pain seems to change rapidly.

I have learned a few things that might help. Ice can be your friend. Putting ice on my neck has helped me more then pills. It doesn’t cure it, but it can be the difference between using pills to fight the pain and stopping the pain before it starts. Place an ice pack or an ice cube on your neck and leave it there until it’s gone. Then remove the ice and wait. If the pain comes back then put it back on. Keep doing this for as long as it takes for the pain to go away. One word of caution. If you feel the pain worsen when you apply ice then stop. Eagle syndrome is bizarre and seems to differ from person to person. Also, try to stay cool. Avoid over-heating your body.

I’m still new to this also. The ringing in my ears and the dizziness are things I have yet to figure out. One thing is for certain, that little monster inside of us causing all of our problems is unpredictable. You could find one thing that helps for a little while and then suddenly it no longer helps and you have to do something different.

Just don’t give up the fight. Don’t let the styloid monster win.

Hi Jenna!

Welcome to our awesome forum! I’m training for my first ultramarathon (55K) which is a ways off - March 2020. I had to give up long distance athletics for awhile during my ES ordeal, but since I’ve had & recovered from bilateral ES surgery, I’m back on track (pun intended). :sweat_smile:

Since you haven’t yet been diagnosed, I suggest you get a referral to an ENT & when you call to make your appointment, ask if the doctor is familiar with Eagle Syndrome. If not, try to find another one who is. Take copies of research articles about ES that describe the types of symptoms you’re having to your appointment. These can be informative to the doctor as well as show that you’re doing your due diligence in trying to figure out the cause of your symptoms. There are links to many articles in our Newbies Guide. A knowledgeable ENT doctor will order a CT scan of your neck to look at your styloids & stylhyoid ligaments & hyoid bone. From the scan ES can be diagnosed. Hopefully you won’t find yourself on a wild goose chase going from doctor to doctor trying to find someone who is familiar with ES. It is somewhat rare & many doctors who should know about it, don’t.

It sounds to me like your styloid elongation &/or stylohyoid ligament calcification has progressed to a point where you now have vascular symptoms when your head is in certain positions. This means that either your carotid artery(ies) or jugular vein(s) are being compressed when you turn your head which makes you dizzy & ramps up your tinnitus. The best I can offer (I’m not a doctor) is for you to pay attention to which head positions & movements cause you to become symptomatic & try to avoid those.

Your comment about swimming w/ a snorkel in your next tri made me chuckle. Actually, that’s not a bad idea for training. The only way you’ll get rid of your symptoms & those problems that come w/ a turn of your head is by having surgery to remove the offending bone(s) & s-h ligaments. In bilateral cases, this is usually done over the course of 2 surgeries which are about 3 months apart. There are two surgical approaches for ES - intraoral (through the throat) or external (through the neck). Generally, we feel the external surgery has advantages not offered by the intraoral approach i.e. greater access to the styloid so it can be removed back to the skull base (i.e. total eradication of the styloid), access to the s-h ligament so it can be removed to the hyoid bone (i.e. ligament fully removed) & offers the surgeon the ability to see & monitor nerves & vascular tissues during surgery which usually gives a better outcome. Intraoral surgery is done via the throat & usually requires a tonsillectomy if the tonsils are present. Nerves & vascular tissues cannot be monitored & the access to the styloid is much less w/ little or no access to the s-h ligament should it need removal. That said, there are forum members who’ve had very successful intraoral surgeries & a few who’ve had external surgeries that didn’t supply perfect results.

Sadly, though we keep a doctors’ list for both the US & other countries, we have no doctors listed on your continent. I recommend you look for an ENT who is also a skull-based surgeon, or a skull-based head & neck surgeon, as these types of doctors do surgeries in the area where the styloids & s-h ligaments reside & should be able to help you.

Please feel free to ask any questions you have, share your fears, frustrations, victories, etc. We’re here to support you all along your ES journey.

:blush:

Thanks! And WOW, best of luck in on Ultra training. I’ve signed up for and trained for a couple Half Iron Man’s but am yet to make the starting line #bucketlist!
I am starting to see a cycle of heavy exercise = sever dizziness for the day or 2 after. I have a couple contacts for South Africa and will reach out to them for another CT scan. Neuro just indicated on last one that teh L. Styloid is prominent. Thanks for the help and feedback.

Very very good to have a vertebral dissection ruled out - that is a scary one and easy to see how the styloid was over looked. That is not uncommon, have to put out the really big fire first. Nice job being your own advocate and pushing forward. Hope the plastic surgeon is well versed in ES and has a vascular consult near if needed!! Best of luck with everything!

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In reference to the OP, I just wanted to add my two cents.

My ES symptoms began with a severe sinus infection event which required surgery. Needless to say this disturbed the nerves inside of my head and likely caused a chain reaction of sorts. Dizziness is one of the things that bothers me everyday, so I can relate.

Geeze! So do I! I’m not close to surgery yet and just managing symptoms until I can get down to him. Dr. Hoekstra is the only Dr. In South Africa who specialises in ES so hopefully he knows the difference between a styloid and my carotid artery. Jokes aside, I won’t jump into any invasive neck surgery unless this guy has several if not hundreds of Styloidectomies under his belt.

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Excuse my ignorance, what is an OP?

Hi Jenna,

I had a similar situation w/ heavy exercise - my blood pressure would drop instead of rising, I’d get winded & couldn’t regain my breath then would get dizzy & feel like I was going to pass out. The feeling lasted for 5-30 min. then other oddball symptoms would follow when the dizziness, etc., left.

It sounds like maybe you only have one elongated styloid which is great. Make sure your stylohyoid ligaments are also checked as they can also contribute to symptoms if they are calcified or partially calcified.

I hope Dr. Hoekstra is knowledgeable & experienced so you can put ES behind you ASAP & actually do one of those half ironman triathlons you’ve trained for! Having to search around or travel long distances to find a good/experienced doctor makes the whole process much harder & more discouraging.

Here is a post about Dr. Hoekstra from a forum member. Sorry about my mistake in not seeing his name on the list relative to where you live:

Mar '14

Hi there,

I have just got to this e-mail - and do belong to the support group, so you may already know my story.

I had my elongated styloid processes very successfully removed by Dr Hoekstra at Greenacres Hospital, Port Elizabeth, South Africa. He is actually a plastic surgeon who does reconstructive surgery, so was well qualified to tackle that sort of procedure.

*It did take a while to find someone who believed that Eagle’s Syndrome was the cause of earache, neck and head pain on one side, and faintness and slight nausea on the other, which I felt on turning my head. *

They were removed extra-orally, and I am now without symptoms. What a relief!

Please let us know how you fare if you do see him.
:slightly_smiling_face:

P.S. A bigger bust will hinder not help you be a speedy triathlete. Go for more fast twitch muscles instead! :rofl:

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Best of luck when you do see Dr Hoekstra. He remains my hero!

Haha. Pesky fast twitch muscles!! Thanks so much for reaching out about Dr. H. I’m so happy your symptoms have resolved. I have a big polo tournament this weekend and it’ll be interesting to see if the high intensity really does exasperate my symptoms. On wards and up!!

OMG I just stalked you! We just bought the house on stilts on Donkin Dr.!!! Hi neighbor!

Hello, we live in Oxford Rd., on the other side. Look forward to meeting you.

OP is short for original post :smiley:

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Hi all, I was diagnosed in 2002, at first it was thought it was advanced throat cancer.I had earache and a sore patch in the left side of my throat.It got so bad that my voice changed as it was so painful to talk.I could’nt swallow.I was so I’ll that my ent surgeon had to operate as urgent and from the internet as he had never come across ES before.The calcified ligament and nerves had pushed through into my throat on the left side.I could only have liquids for about 6 weeks.The styloid I was was 16cm.I had the other side operated on 6 months after the first one (removing my tonsil and going through that way) I had to medically retire as a nurse on a busy surgical ward.Unfortunately mine have grown again, I could’nt believe it when the symptoms started again! I’m at the stage where my ent specialist took me to theatre, the plan was to go in externally.He did’nt proceed as the bone has grown at an angle and pressing on my carotid artery. I have seen 6 different specialists in the UK, including 2 professors and no one will operate as it’s too dangerous.The bone is pushing into my throat on the left side but it’s blunt so has’nt come right through the skin yet…I dont have to explain the pain as I’m sure you all know! I lost my eye at 25 due to Glaucoma and to drive I had to rely on turning my head.I gave up driving because I can’t turn my neck,
it is a bit scary and I, or my specialist dont have any solution.I now lose my balance daily, have raging tinnitus and choke a lot, even on fluids.
My answer to all this is to do what ever I can ( holidays :full_moon_with_face: I have battled breast cancer and am now in remission so I have even more reason to do whatever I can.Sorry this is a bit long but as you will know, it’s quite difficult to explain!..Jan.

Hi Jan,

Have you gone to see Mr Axon? He’s the most experienced ES doctor in the UK (Cambridge area). He has taken care of many cases of ES involving vascular compression. Jules, one of the moderators on this forum, is case in point. You can privately email her by clicking on her screen name in any of her posts if you want to discuss her experience more personally.

Your situation sounds horrible, but I refuse to believe it’s irreversible. You just need to find the right doctor with enough experience to tackle it.

I do agree with Isaiah, surely leaving it in is a risk for you too? It sounds really horrible, so thinking of you & will pray that there is someone who can help you…