Newbie questions... apologies in advance!

I haven't been diagnosed with eagles but I wanted to know whether you think I may have this. I want to go to my GP armed with the facts and try to persuade her to give me a referral to Mr Rogan Corban. (I'm using the NHS in the UK).

My symptoms are all on the right side as follows:
Facial pain around eye
Pain in neck under jaw
Stiff neck
Pain in ear, jaw, neck, shoulder, arm, hand
Numbness in tongue, arm, hand
Enlarged tonsil
Tonsil stones
Postnasal drip
Feeling of something stuck in throat
Occasional slight difficulty swallowing

I have no tinnitus at the moment. I have had mild episodes in the past.
I have had this for 6-7 years. Got worse after pregnancy.
I also have pain on the right side of my back, hip and leg hut this may be unrelated.

Been to 2 ENTs, both unhelpful and no answers. Think they think I have allergies and reflux, but treatment for these has not worked at all.

So, do you think I have eagles and what should I take to my GP to convince her?

Hi newbie - I'm definitely not the source of lots of information, and I'm sure you'll hear from many of the wonderful people on this site giving you really good advice.

~~In the year since I've known that I have ES, it was the cone xray that was done at a dental surgeon that most graphically showcased my elongated styloids. I just called and made an appointment to have the cone xray done, right there in the guy's office. It took five minutes for them to read the xray and give me a disc with a 3D view.

Good luck, Hopeful

Thank you hopeful - it might be easier to go to the dentist and ask for a cone xray in that case! I could then take that to the GP as evidence and hopefully progress from there. Very useful.

I just know that a panaramic x Ray ( regular dentist) and a three d sonogram ( maxi facial ) are where to start. MRI are useless .

U of k is the best place and closest for me.

Even after I had my panoramic showing two elongated styloid way pass normal and four years of pain. When I went to get and use this arrogant maxo facial guy said that my symptoms were not eagles. However after telling him just give me the 3 d sono he changed his mind.

My symptoms are like tooth and jaw pain , 24/7 headpain , filling in the ear and not much throat issues until recently I’ve been choking on water.

It’s all gonna look different accept the pain is constant and not intermittent.

Bless you on your journey. It’s so rare that so many will not believe you. Just get your dentist to tell you and explain your imaging. You will know from that!

Hi Cat
I agree with the X-ray comments below, X-ray seems to be the best and easiest. I’d had so many scans / MRIs etc over the years, all unnecessary for diagnosis it seems.

Your symptoms sound familiar! I can agree with most of them, mine right sided too.

I’ve been a patient of the wonderful Mr Corbridge, both as a private patient and on NHS. I had surgery couple of years ago, it didn’t resolve things for me unfortunately and I hope to see him again soon. I assume you will go via choose and book, I saw him at the Townlands Community Hospital in Reading as that had the shortest waiting list but still quite a while. I’m couple hours away from the Hosp so he offered to review my scans via email which saved some time. I paid the local hospital admin fee for them to put all my scans on cd, it’s great fun to have a good look through!

I’ve been on lots of meds, had couple surgeries and still not brilliant. I don’t think surgery works for everybody but I do recommend Mr Corbridge.

Wish you luck, hope you’re gp is helpful.
Best wishes
Sue x

Thanks Sue - that's great to hear from someone who's seen him. Do you know why the surgery sometimes doesnt work? Is it because the bone regrows? Also, how much did it cost to see him privately if you don't mind me asking?! Considering it if my GP won't refer as they're generally much happier to refer when I'm paying!

From what I know, the main reason the surgery doesn't always work so well is that they don't take enough of the styloid out.

Not sure why surgery not the answer for everybody, I blame internal scarring and possible nerve damage which could have occurred before surgery.
Gp should allow ‘choose and book’ for you to see who you want, townlands / royal Berkshire or Circle Reading if private. I paid for one appointment which about £150 but its if they do tests it becomes more expensive, just the scope cost about another £250 so try NHS if you can wait.
His secretary at the Circle was very helpful and will advise what best to do.

I wonder if things can grow back. Also wonder if I have ‘stone’ in roof of mouth. I’m told I have elongated hyoid bone and unsure what effect this has. I think that everybody who has successful surgery prob no longer log into this site, that’s what I hope! Read too many stories of pointless surgeries. I felt great for few months when the nerves were numb. I don’t get lots pain, just huge annoyance and need to clear my throat and keep swallowing and reel like rocks in throat, dodgy right eye and so on ,
Where in the country are you? Hope you’re not far from Reading?
Wishing u luck, regards, sue x
268-image.jpg (159 KB)

Not too far - central london. I think you're right about people not logging in once over the pain. Same for all chronic conditions sadly! thanks for all your help. I'll report back on progress. Cx

welcome Cat 75 from another Cat (Catherine/Cathy but they were taken! ; > ) in NJ USA,

I believe those unable to get relief although the bone has been removed may have scar tissue as Sue mentions. Scar tissue can be formed from prior surgeries but also within other situations as well, that ffect the connective tissue that liens our bodies. There are also such conditions as Dupuytren's which I was just diagnosed with as well, sigh...I'd suspected this was told by one hand surgeon i did NOT have it, FIVE YEARS AGO, then saw another and he tells me I DO HAVE IT! again sigh...more blood tests will reveal the truth. AS Dup's affects the connective tissue, I find it may reflect in the areas of the neck as well. I am giving a link to Dup's here as many might check it out and see if they have any other symptoms that this condition covers. Because docs feel this disease process has a genetic connection and affects male & females in equal numbers, I had asked a urn-gyno if she felt it could have caused my urinary conditions (Interstitial Cystitis/Vulcodynia/Coccyxdynia) as it caused my Grandfather to have Peyronie's (bent penis so severe he had to have a circumcision in his 80's!); what could it do to the female populace? SHE DID NOT KNOW! but told me it was a good question. off to the next so-called experts...; > )

Cat in NJ
Ann Rheum Dis 2006;65:414-415 doi:10.1136/ard.2005.044016
  • Letter

Dupuytren’s contracture is associated with sprouting of substance P positive nerve fibres and infiltration by mast cells

  1. T E O Schubert1,
  2. C Weidler2,
  3. N Borisch3,
  4. C Schubert1,
  5. F Hofstädter1,
  6. R H Straub2

-Author Affiliations

  1. 1Department of Pathology, University of Regensburg, Regensburg, Germany
  2. 2Department of Internal Medicine I, University of Regensburg, Regensburg, Germany
  3. 3Department of Orthopaedic Surgery, University of Regensburg, Bad Abbach, Germany

That's very interesting. I have IC too. Looked up dupuytrens though and nothing wrong with my hands! Must be some link tho...

I've done PT (inner & outer woe k with a woman PT) and exercise (Yoga Pilates & Zumba) to get the muscles and blood flowing properly, it helped a lot for my IC. IT's good you have no DUp's as it affects grasping things dropping things. Pretty much feel in glide ht e arms are not there full of air, some people on my other list have spoken of the same typews of feelings, it's odd. I am going to ask for some blood tests find out why I have it if it can't be handed down from maternal Grandpa thru Mom to me, a least that is what one doc told me.
I Can t begin to tell you what another doc said, too long to post her but he's blaming allergies of r Dup's yeah right and he has a site to ell "alternative therapies" vitamins and stuff. I know diet and vits can help some issues but to blame a condition that causes calcifications within the hands on "allergies" was impossibly stupid! ome idiots!