Quick recap… Had surgery on the left side 2 1/2 months ago, Pain is somewhat still there…But guess what?! The pain is now on the opposite side…AND ITS TEN TIMES WORSE!!! I thought the left side was bad omg was I WRONG…I feel like I’m dying…The surgeon doesn’t want to take the other side out because I still have pain on the other side from surgery and he said I don’t have eagles anymore…He also said the other side is normal length…which it is not…Its 3.7ish cm…And you can tell its more angled toward my jaw hence the severe jaw pain…I have THIS LOUD PULSATING HUMMING in that ear now…Does this mean an aneurysm? omg…It took 2 years to find this surgeon and he doesn’t want to take it out…I seen him twice after the surgery and he just won’t do it…It feels like its coming out of my tonsil and out of my jaw…i feel like death…I Can not keep living like this anymore, 2 years of crying in pain is ridiculous and over 40 doctors. Its getting worse not better…IM SCARED!!! It honestly feels like I will die from this and I’m not even lying…I wish I wasn’t in Canada, seems like there is more doctors in the states with knowledge and i don’t have money to go there…Im being punished 
Should I send my scan too Cognetti? And see what he says…I know he’s like 1000000000 miles from me but he seems to be the best in this field…
Sometimes after surgery (when people have had elongated styloids both sides), it can seem to set the other side off. ES can cause tinnitus, and pulsatile tinnitus, but that doesn’t mean you have an aneurysm- causes of pulsatile tinnitus are varied. I have it as the jugular vein has been compressed, it’s improved a lot with surgery. But often the cause isn’t found, although if it’s coincided with worsening symptoms on that side, it could well be down to the styloid. Aneurysm is very rare from ES.
From your doctor’s point of view, if the first surgery hasn’t improved your pain level on the first side, he probably feels that it wasn’t caused by the styloid, as removing it hasn’t helped, so not wanting to carry out a potentially risky operation if there’s not likely to be any improvement is understandable. Quite often for diagnosis doctors will inject the area around the styloid with Lidocaine, to see if it improves, If it does, they confirm ES, if not they conclude it’s not. Because you still have pain, he is understandably not sure that it is ES. Do you feel that the pain on the side you’ve had operated on has improved at all? Nerve pain can take anything from 6 months to a year to settle, so it may well be early days yet for you.
Some doctors like to leave things to settle for a while before doing a second surgery- my doctor wanted to leave it at least 6 months, so it might be that you have unfortunately to put up with the pain for a bit longer anyway.
3.7 cms is long for a styloid process, there is research (in the ES Info section) about the ‘average’ length, but different doctors have different ideas. If you do try to approach him again, then it might be an idea to see how the side you had surgery on settles with time and take some research papers/ info with you to show your case about styloid length- there’s also a paper/ study Heidemt found which shows that the angle has more of an impact than styloid length.
Dr Cognetti is very experienced with ES, and sending scans is obviously easier than going to see him. If you think that you would be able to travel to see him, then it might be worth a try.
No it hasn’t improved at all! I have pain behind the thyroid cartilage and I always figured it was referred pain from eagles…I did have some pain from the styloid yes…It was poking under my chin causing discomfort…but the main pain was the thyroid cartilage(voice box) left side…Feels like a bone is sticking out inside it…I just had an MRI nothing again…You can feel the boney object poking into my esopagus. And NOW the other pain is right where the styloid is that wasn’t removed yet…You can even feel it and it feels like its coming out of my tonsil and through my back jaw…So I just bet that I’m suffering from 2 conditions and its making it all confusing too doctors…Ive seen 4 ENT and no one has ever offered lidocaine…they say bye bye. sucks to be you…They say it can’t be eagles because its in your thyroid cartilage the pain…but NOW its on the opposite side right where the styloid is…So I wonder if Im having tons of calcified ligaments in my neck causing pain…Im SOOOOO LOST! I just want too be normal and go outside and play with my son…im only 30, this all happened in a year and half…BOOM! Fast! Pain too the EXTREME!!! I wonder if having a baby set it off…How do you convince a doctor you truly have eagles when you have pain behind the thyroid cartilage as well…I mean can’t ppl have more than one condition in the same area of the body!!! I was cursed! And you can tell this styloid is closer to my jaw the one that wasn’t taken out…hence the severe jaw pain on this side…And I get inside the throat pain as well…There HAS to be a doctor in this world that cares and doesn’t shove you too the side…I need someone to study my images and knows what they are looking at…
Why don’t you send your scans to Drs. Cognetti and Samji?
hey @kelx just want you to know that even tho doctors are frustrating, all of us acknowledge your pain and frustration. Stress makes everything 10x worse right? Some of what you describe sounds like the hyoid bone (floating horseshoe-shaped bone near throat). You could try take some magnesium supplement, I have had some luck with chelated magnesium. It helps relax muscles, helps with stress I find. If you’re frustrated with ENT’s, I’ve heard a Speech Pathologist can sometimes be helpful, or an oro-facial pain specialist. Another path is a TMJ specialist (a real one, not a dentist who took a weekend course in TMJ). Last thought, be mindful about your sleeping position. I’ve had some improvement after making sure to never sleep with any weight/pressure on my chin or jaw.
Try to stay calm! 3.7 cm is not much to all these complications. I extracted my bones twice that measure. I believe you are experiencing a mess on your nerves of the face. The side that you extracted the styloid had some nerves blocked by surgery cuts. By contrast, the other side is like it more intense than ever. Take mild analgesics (Advil). Gradually the body will be adjusting.
Have you looked into hyoid bone syndrome- there’s a few conditions like bursitis, insertion tendinitis etc. which could cause pain in that area- not saying that you’d be able to get any treatment for anything like that any easier than ES, but if it is something like that, the whole chain from the styloid process, ligaments and hyoid bone are all linked. Here’s a link, a little bit of light reading!
https://journals.viamedica.pl/folia_morphologica/article/view/19287/15180
Hi . I read your post. With tears running down my face I can honestly say I know how you feel . You just described my situation. I am on so much pain I was put off work. My dr will also not do the other side. I feel the same way that I am being punished to. Life has been pure hell in the last 2 years. Every time it rains my Insions swells up the pressure on my head is so bad I am so Ill I know I am a complete stranger but I am here if you ever want to chat.
Nancy
Hi everyone; to answer the latest responses…My hyoid bone is fine, I have zero pain in that area…Its directly under that the (voice box) Something behind it is causes terrible amounts of pain…Its not from surgery either…My surgery recovery is great, no problems and no pain in that area…This pain is the EXACT same pain I experienced before surgery…I literally feel a bone is forming behind the voice box causing pain…I can’t explain it its just terrible amounts of pain…You think with the advanced medical these days someone could give me an answer…
I’m so sorry you’re still going through this with no relief. You worked so hard to get this surgery.
You mentioned a DX of thyroid issues before, have you been able to get anyone to look at your thyroid again? Is it possible you have a large nodule causing you pain?
I had an MRI done a month ago and an ultrasound done 3 weeks ago on my thyroid. Everything is fine with it. My thyroid isn’t causing the problems. It’s whatever is located behind the voice box and of course my right styloid needs to come out!
Maybe it’s tumors on the parathyroid gland? My friend had this problem and it can’t be found with scans…there are blood test indicators though…I have a link about it…I’ll message back in a moment with that link.
I has the blood test done a couple months ago. It will fine! Grrrr
I’m sorry you are going through this Kelx. To other members - please don’t compare lengths. That is VERY unhelpful. My elongated styloid bone was fractured by a seat belt, I’ve had two years of extreme symptoms and had to quit my band, my profession took decades of practice to accomplish. Yet a little bone that wasn’t a “length winner” was able to shatter it all. Comparing lengths feels calloused and in-compassionate. There shouldn’t be “one up man-ship” of symptoms even if there is a way to compare pain. There is a physiological condition called “power over”. It’s when someone doesn’t have self identity unless putting someone else down to feel powerful over them and a sick sense of ego. It is dangerously close to sociopath behavior. Let’s first do no harm when trying to help.
Length has Nothing to do with it in my case. It’s obviously the way it’s angled or the thickness of it. It is severe pain!!! I can’t do anything! My ear hurts, throat hurts, I can feel this thing coming out of my damn tonsil and jaw, tons of pressure in my jaw, face and ear! Just look left side of picture where the styloid is. Yes it’s a tiny bit shorter than the right side I had operated on BUT look at the thickness of the left side. And why the severe pain after my surgery on the opposite side that never gave me pain?! So weird!!! Oh and Advil LOL…I can take 4 Extra strength Advil and 4 extra strength tylenol and it doesn’t even take the edge off…Doctors gave me opioids and the pain is still there!!! Yes a small bone like this is the worst possible pain one can ever imagine!!!
It’s not ‘just a small bone’- I think Snapple described it as a spike, and that says it all!
Lol whatever it is it’s the most painful thing I ever experienced in my life!
Hi kelx did you have surgery on the other side?
Hi my problems are the same as yours. I cant talk for long with it. It causes a spasming rubbing pain when i talk. I think my calcified ligament on one side is touching or stuck to the hyoid bone. The hyoid bone is the closest thing to the voice. I cant even talk to my kids. Im still searching for doctors. Feel like im being left to rot. I feel exactly the same as you like im being cursed or punished.