New diagnosis --- confused

Hi my name is Sharon and I was told mid July that I have Eagle Syndrome by a Vascular consultant , he’s referred me onto ENT but my appointment is not until 18th Sept.
My confusion is where my pain is, after reading many other posts I realise that my symptoms don’t really fit the norm, most of my pain and discomfort is in the base of my skull and neck with arm pain/pins and needles sometimes, I have headaches daily which vary in severity.
My diagnosis follows a ct scan which showed I have bilaterally elongated styloid processes , it just seems my pain is not what is considered usual and makes me wonder if this is Eagle Syndrome or something else ?

There have been quite a few members who’ve had more pain in the base of skull areas, and headaches are a common symptom… it’s difficult with ES as on here you’ll see that a lot of us don’t fit the ‘norm’ !! I never had the pain when swallowing which is one of the main symptoms.
Pins and needles in the arms/ pain and weakness in the arms can be caused by one of the nerves to the arm and shoulder being compressed, so that possibly could be down to ES. Headaches can be caused by vascular ES. If you’ve not had a look at the Newbies Guide, there’s a lot of info about symptoms, and a survey a member did a while back which lists some of the more unusual ones too.
To be honest, often doctors are sceptical about the varied symptoms of ES, and only believe them when members report the symptoms disappearing after surgery. It seems drastic, but sometimes the only way to tell is to see what goes after surgery! But I can understand you being concerned about having an op if you’re not sure that ES is definitely what you have!

1 Like

Thanks that does give me some reassurance, I think my main worry is that even if I get the surgery that I’ll still have the headaches and neck pain , but I guess only time will tell me that, roll on Sept and seeing a Dr who has ES experience.

More reassurance for you: There have been several members on this site who have had migraine level headaches with multiple trips to the emergency room because the pain was so severe who were completely free of those headaches after ES surgery. I had pain at the base of my skull from my extended styloids. It is completely gone now that I’ve had surgery.

1 Like

I am a severe headache relieved post-op member. I used to also experience an electro-shock nerve zap at the base of my neck.

1 Like

I have those symptoms too, base of skull pain and all the rest, and I’m currently waiting for my 3rd type of scan results. First was MRI showed nothing, a few years later after much suffering followed through, and did a ct scan, and it confirmed I have bilateral elongated styloids too (and 3D version of the scans completely confirmed them, and I posted some pics on the forum in another post as it’s not all about the length of styloids but also the shapes). Had a final 3rd scan last week in Cambridge after seeing Dr Axon this time as he’s experienced, and this time CT with contrast, to see if veins and blood supply is OK etc as the head pressure can be more serious (medically) than the neck/skull pains themselves caused by the styloids pressing against nerves and muscles. If you try a course of steroids you may find the muscles are less inflamed and then skull pain reduced. You just can’t take steroids regularly though so good for diagnostic purposes. Ingpflamation from this can also constrict blood flow in out head too so I’m checking that now before final decision on Ops. Either way, once my consultant gets the results with the contrast back next week, I will know for sure all my options, and then discuss to get the ops done on both sides. If makes you feel better, the consultant said usually all the issues do go away if styloids removed completely right from base of skull (completely means less chance of growing back) as the eagle causes lots of these symptoms (if all else is healthy with you, such as blood results and thyroids etc then it’s most certainly all from the pressure of styloids on your bits and pieces in neck inflamed causing all the issues). I would stick with it, keep pushing Drs who heard of this, and get a contrast ct done too and find a surgeon WITH experience willling to remove them. Never heard of anyone dying from the ops if done skilfully, but heard many success stories. I’m also hoping to be one of them…

1 Like

Thank you for your encouragement and support, the CT scan I had done by the vascular team was with contrast , unfortunately the scan also revealed that I have a cerebral aneurysm so at the moment I’m unable to take anti inflammatories at least until I see a Neurologist on 7th Sept, my first ENT appointment is on 18th Sept luckily one of the DRS on the list on here works at my local hospital so I should get to see him.
My blood results so far are ok I do have raised crp levels but thats to be expected and I’m on thyroid medication but levels are fine. Good luck to you I hope you get a op date soon.

Hey @vanpire13, I had pain at the back base of skull. I’m with Jules- I don’t think there is a “norm”. Nearly all your nerves need to funnel through your neck, so those pesky bones can really cause trouble. One of my weirdest symptoms felt like someone dumped boiling water on my lower leg. I would yelp and really embarrass myself. Some of us have pain and swelling at the back / bottom of skull after surgery because it’s close to where the bones are removed. Also I need to mention that one of the friends I made here had her surgery the same time as me and I got to see a picture of her bone. It was surpriseing how it wasn’t smooth. When you combine that the bone grows in whatever bizarre way it wants and no two people have the exact same neck anatomy - it’s pretty hard to have a “norm”. I highly recommend Vitamin B2 (Riboflavin). One of my docs prescribed a 400 mg capsule. It seemed to do the trick for the back of the skull and it’s a supplement, so you might be allowed to use it.
So sorry you are going through this, my right Styloid plus something called a “carotid bundle” were pinching off my carotid artery. I had TIA’s and monster headaches. Both Styloid processes were elongated. One was fractured from a seat belt incident. I currently no longer have TIAs and a ton of memory and things I’ve studied in the past have come back to me. I’m telling you this, because the weirdest things get better. I’m in for a long haul of healing because of the soft tissue damage from the fractured bone, but it is still healing. I think I should have had my IQ tested before and after the surgeries LOL. I’ve been freaking people out by how I’ve been remembering details when my friends and family don’t and they are healthy LOL.
Hang in there.

Hey MusicGeek!

So glad to hear this good report about your healing progress! I hope you soon feel completely healed!

Thank you! Not to derail the thread - I was recently told I should be able to play again - but I had to completely quit winds and voice, and will need to avoid them for some time. It’s a huge amount of patience, but I just need to trust it’s the right thing. :slight_smile:

Yep same here. A sharp burning pain. Sometimes runs into my shoulder and down my arm. My troubles are bi-latteral with the majority of the pain on the left side. Cranial hypertension, ear pain with some hearing loss.

I had been goring through this for just over two years before finding doctors that had the knowledge to address it. Tried conservative methods first and now going to do surgery on the left side first this coming Monday. I’ll write a bit about my experience on th subject here in the website if I feel up to it.

Hope you’re surgery goes well on Monday, Crowag. Best wishes for a speedy recovery!

I hope all is well. Let us know how things went, and the best of luck in your healing process.