New To Group- Symptoms

I had a capable surgeon who said the same to me - “I’ll do it if you want me too.” I found another more capable surgeon who is completely on board. Good luck.
BG

1 Like

He said I had some of the symptoms, and he has done the surgery several times. He was a heck of a lot better than my other ENT who referred me to the neurologist and Said there is no way I would have those symptoms.

1 Like

I think it’s just that they can’t be sure that all the symptoms will go after surgery, so don’t want to promise something they can’t guarantee, & that caution isn’t always a bad thing, at least it doesn’t give you false expectations. I’d be wary of a surgeon who promised a total cure too. As long as they do understand ES, & understand that they need to remove as much of the styloid as possible, & any calcified ligaments.
It’s a diificult decision…

3 Likes

Thank you so much for the info. If it wasn’t for this group, I would be prolly panicky all the time probably.

1 Like

Hi im new to this page today ,and been reading all your comments and symptoms , this is exactly what I have been through saw the consultant with the CT scan results last week and he said it is what he thought Styloid process , eagles disease , he did exactly what your doctor did previous to the scan appointment and put his finger down side of my throat ! He said he would refer me now to another doctor who actually does this surgery to have a chat about it ,and I would have to wait couple of months for appointment . I am in pain with my neck feels like I have bad arthritis in it as I no how that feels as I have had a big toe fusion operation last year and now awaiting for my other one to be done . I started having really bad ear pain ,the doctors gave me antibiotics thinking it was a infection , but they just couldn’t pin point what was going on , then it wasn’t until I was referred to ENT and had the CT scan and been diagnosed with eagles syndrome , Thank goodness though we have got to the bottom of what was wrong , just got to wait now for appointment to see about the operation .

2 Likes

Hi Shazza!

Welcome to our forum! I’m glad you found us, & the information here has helped you. There is a very experienced ES surgeon in your country - Mr. Axon in Cambridge area. I don’t know if you’re at all close to there (I’m in the US), but he’s done many ES surgeries w/ good outcomes. I’m including the link to our doctors’ list so you can see if the doctor to whom you’re being referred is on there. If he’s not, we are always looking for new, competant ES doctors to add so we’d love for you to follow up with name & contact information down the road.

I don’t know if you can ask to be put on a cancellation list in the UK, but in the US, though it’s not offered, if you ask, most doctors have one. This can expedite appointment dates by quite a bit.

Thank you for sharing your story. Please feel free to ask any questions you’re not finding answers to. We’re all experienced w/ ES here & will be happy to tell you what we know.

:blush:

Would be interested to know who you’ve been referred to if you know? I had surgery with Mr Axon, he is very good. Unfortunately with our NHS it will be a long wait; it may well be a wait of up to 6 months for surgery after you see the consultant.
In the meantime there is info about pain relief in the Newbies Guide Section, titled ‘ES Info- Treatments’. Not that everyone has been helped, but there are some things to try.

Hi Jules
Thank you for the message .
The Consultant that I have just seen last week was Mr Dezso , who discussed and shown me the CT scan and diagnosed Elongated Styloid Process ( Eagles Syndrome ) and he has referred me to Mr Diakos at the hospital who does the surgery for Eagles . I was told by the Dr that I should have a appointment through it would be couple of months to discuss surgery . I was reading through comments on this forum about people that had had the surgery and if it was successful . Most of the pain I get is in my neck and pain and fullness in my ear . I have eagles in both sides right and left . but its the left one that causes me all the pain .

There’s a few things it’s good to ask before you go ahead with surgery- ask what experience they have & how surgery went for others. Some surgeons operate externally, some through the mouth- intraoral. External gives more visibility so more styloid can be removed, so it’s generally a better method & there’s more risk of infection with intraoral, but members have still been helped by this method.
The styloids need to be shortened to as close to the skull base as possible, & anything left smoothed off, & definitely the piece should be removed! If there’s any calcified stylohyoid ligament then that needs to be removed too.
You should ask if the nerves are monitored through surgery- it’s helpful as they can check if there’s any stress on them. Some doctors put in a drain to help with swelling, others prescribe steroids, so you could ask about that.
And a word of caution- if you have bilateral elongated styloids then the side left in can sometimes start to cause pain, not always, but be prepared for that, you might need to have the second side done.

3 Likes

peanut 929. The arm and shouder pain are probably from the stylohyoid putting pressure on the sternocliedomastoid muscle which gets tight and pulls on the arm and shoulder. You can research the muscle. It is affected by the nerves that are impinged. I will tell you that once you have surgery, you may need some physical therapy to help release and relax the muscles under your jaw and in your neck if they have been compressed or held hostage for any length of time. Make sure that you get therapy if you need it.It is very helpful in helping get a full recovery.

2 Likes

Thank you I will for sure get some physical therapy to get everything back going

Thank you for the info. I will ask my surgeon the couple of questions I didn’t ask him, that you mentioned in your comment Tuesday before I have one side done. I did ask him about how much he was cutting off he said he would cut 2/3’s of it off, and he has done about 43 surgeries during his time as a surgeon. I don’t know if all were through the mouth or through the neck and mouth. He was very confident about it though. He also said he would be giving antibiotics when I was there through IV then send me home with antibiotics. You have been so helpful I appreciate you so very much

1 Like

Will be praying all goes well!

1 Like

Here’s a visual example of what Emma mentioned above.

3 Likes

That’s a beautiful pic! All the spots is where I have pain too. Thank you so much for the visual. I love this sight it has helped me tremendously

3 Likes

The spots are exactly where I get all the pain too , it feels that my arms are dropping of and the pain in the back of my neck is terrible . This forum website has really helped me understand ES really well …

3 Likes

Hello everyone, I have not been on the forum for sometime what with one thing and another , and I was newly diagnosed with elongated styloid process on each side , although I only get the symptoms on my left ! I don’t no if I have wrote this on the right bit of the forum .
I have now had my CT scan results back and asked if I could have them through which I have received , I’m going to download them to see if anyone could help and explain them to me . The consultant did show me but when you actually have them yourself it’s very hard to understand them , sorry for seeming abit thick , :joy:. I was then referred to see another consultant/ surgeon as the consultant I did see was not experienced enough to do surgery ! I live in the UK and am now under a doctor called Mr Diakos I believe he is American . I had a urgent appointment to see him couple evenings ago as I was in so much

![image|666x500] pain , ear throbbing neck pain , and he said that he wasn’t convinced that all the pain was coming from the styloid so he has put in for a quick MIR scan on my neck , had to have blood test yesterday because have to have it with contrast , so now I’m awaiting appointment which I should get he said within next couple days and have it done within the 2 week time limit . I’m so confused tho with it all been diagnosed with this E/S but now being told his not convinced the pain is coming from there . I have uploaded my CT scan anyone be kindly to explain to me what they can see , I don’t even no how long the bones are … it’s the left one I’m having all the pain from . :frowning:

The images are very different to the ones we usually see, so difficult to compare to be able to help, & we’re not doctors on here… The 2nd image looks like the left side styloid (right side on the image) can be seen, looks longer than it should be, & quite angled. The neck MRI will hopefully rule out anything else going on, I wonder why he said he didn’t think all the pain was coming from the styloid; unfortunately many doctors are ignorant about all the symptoms that ES can cause. You can have a look in the Newbies Guide Section for common symptoms & what might cause them : ES Information: Common Symptoms And Possible Explanations For Them
It might give you an idea about what might be down to ES so you feel more informed when you see him next? Unfortunately other members have been through something similar- getting diagnosed then a new doctor isn’t sure. It could be helpful too to see what the styloids measure from the radiology report?
All I can suggest is that you see what he says after the MRI results, but maybe go prepared with info about styloid lengths & angles- there’s links to research papers in the Newbies Guide section- to argue your case. If he does agree that it is ES, you should ask him what experience he has with surgery, whether he does intraoral or external, & how much he’d remove.
Mr Axon at Addenbrooks in Cambridge is very experienced with ES, but he does have quite long waiting lists, I don’t know if it would be possible to be referred to him if you don’t get anywhere with Mr Diakos?

2 Likes

Hi Shazza,

I agree w/ Jules that the pictures you posted are not what we typically see as far as CT scans go. If the top picture is of your left styloid, it’s not only long but also quite squiggly which can also create problems even w/o elongation.

Jules has given you good information. I hope you are able to get your MRI soon to rule out anything else that might be going on. I also suspect your neck pain is caused mostly if not completely by ES.

1 Like

Thank you both for replying to my post , I am awaiting my MRI with contrast so will no more once this is done , so I will be able to update . In the meantime I will continue to read all posts about symptoms etc . .

1 Like