First off, please don’t stop asking questions! We’re all here for you always!
Secondly, Don’t panic! The styloids often grow in separate directions. It’s entirely possible that what you’re feeling has more to do w/ the position/angle of the elongated styloid than its length or the hyoid bone. Your other side, even though it appears attached to your hyoid bone, may be at a slightly different angle which is less irritating to the nerves & muscles in the area. Additionally, the styloid could be more mobile on the side where it doesn’t look attached to your hyoid & thus more prone to create irritation because it moves when you talk where the other side is anchored & immobile.
Be aware that even though surgery really helps most people, recovery does take some time. You won’t waltz away from the hospital or surgery center feeling unscathed. After surgery make sure you closely follow the pain medicine protocol your doctor gives you & try sleeping w/ your head elevated by using a wedge pillow w/ other bed pillow piled on top of it. This will help reduce the swelling in your throat and neck after surgery. In addition to the wedge pillow, some people have recommend a V shaped pillow to help cradle their heads and support their necks. You will need another adult to be at home with you for at least a couple of days after surgery especially if you have young children.
I have high hopes that surgery will be life changing for you in a positive way.
Ok seriously panicking now. Im having doubts because my symptoms each side are so different. My right side is swallowing pain from the soft palate to my ear with ear fullness and jaw cracking almost like tonsilitis on one side. But my left side is more uncomfortable than painfull( i feel the bone this side) and talking is strenous. So its obvious the left side is from eagles but im beginning to wonder is this tonsilitis pain from something else? I had mri but at that time they were looking for problems on the left which was normal. Do they always check both sides? Also i read that they cant see behind the tonsil on a scan. I had camera scopes but again they were looking on the left. This right sided pain is getting worse and i dont want to go through surgery if im not sure its from eagles. My scan shows my sp is bad but i dont have neck pain on turning like many others its all like tonsil pain on one side. How can i rule this out i dont want to sound unsure or my ent will doubt me too.
So if it was called California Condor and it was causing problems, would you let them fix it? I f you look at pictures of coral formations, ever see two the same? Calcification of your styloids is EXACTLTY the same process as making coral. Of course they are different.
Ultimately no-one knows exactly what symptoms are down to ES; it’s a bit of a wait and see what improves after the op. Having steroid/ llidocaine injections into the site can reduce symptoms which confirms it- you could ask your ENT if they do this. But this is only a temporary measure and not a cure.
Please look in the Newbies Guide section- common symptoms of ES, and you’ll see where there are some common symptoms, there are a lot of quirky ones too! Like I mentioned before, it’s such a cramped space, with so many nerves and major blood vessels, that a slightly deviated SP, a wide or elongated SP and calcified ligaments can compress or irritate those structures, and it does vary. Pain in the tonsil area and the palate is common, pain speaking for long is common… I never had the swallowing pain which is one of the most common symptoms, but still had bilateral ES!
Your scan shows calcification clearly.
As I have read your many posts, July123, I fear that you are overthinking your symptoms which is leading you to search for problems you might not have. Consequently, you aren’t able to focus on treating the one thing that is for sure - your ES diagnosis. I believe it would be in your best interest to have a surgery or surgeries for ES and see how you feel afterward. As you have read on this forum, when you have bilateral ES and separate surgeries for each side, the side that was not operated on during the first surgery often becomes more painful/symptomatic as you await your second surgery. None of us can explain why that is, but perhaps it’s because instead of having two sides with pain on which to focus, there is now only one. The bottom line here is that if that happens, it is not a sign that the first surgery didn’t work. It is verification that the second surgery should be done to help the other side heal.
This info is not intended to be criticism but to help you think more clearly about your approach to your ES diagnosis. So many of us have had life changing (in a positive way) results from having ES surgery that we feel confident in recommending it for a case such as yours.
Thank you for your advise Isaiah its just that i can understand my symptoms on the left as the styloid bone is broken and the end is pointing in my tonsil. But on the right the styloid and ligament is calcified going downwards continuously and looks like its been like that for years with no symptoms. So im just wondering how could this be causing soft palate and tonsil pain unless its nerve related. At the time of my scans they were told my problems were on the left which they were at first. Do they always check the opposite side also ?
Most people w/ ES have sore throats in the tonsil area (even in the absence of tonsils as was my case). The fact your styloid & ligament are a calcified unit on the right side means you don’t have the internal mobility that someone w/ a normal styloid & ligament (or even an elongated styloid & partially calcified ligament) would have. The absence of that mobility is surely putting pressure on nerves and muscles in the area which ABSOLUTELY could result in the variety of pain/symptoms you now have on the right side. I had a bunch of symptoms in my mouth, behind my eyes, aching collar bones, neck pain, pain at the back of my skull, heart palpitations, plumeting blood pressure when I exercised, etc., that were all due to my ES. Many of these seemed they could be unrelated to ES, but as ES was the only diagnosis I could blame, I came to believe that it alone was the cause and after having 2 surgeries, I can say I was right.
If ES is suspect, both sides will be scanned as it is often the case that one side will be symptomatic when the other is not. I had no symptoms on my right side when I had my scan, only on the left, but the tech scanned both sides just to be thorough. My right side never caused the pain my left side, did but it did cause my heart, blood pressure & soft palate/roof of my mouth problems. ES causes bizarre symptoms many of which can be individually unique (i.e. not everyone gets them) .
I had both sides done now one in 2014 ® side & (L) side done 2015. I went to Columbus, Ohio and Dr. Forrest performed both surgeries. As it turned out both Styloids had fused to the upper horns of my Hyoid. My Ligaments both calcified. The (L) side was the largest one Dr. Forrest had ever seen. He had to do an external approach due to my situation. After removal of both Styloids and almost 3 years later I’m still recovering. I did get some mechanical relief and am able to chew a little better than before. However, after surgery TMJD became more intensified. So I still have issues chewing. I also have Chronic Lyme disease. So it’s difficult to decide what symptoms are from which illness? Lol. I continue with myofacial pain, daily tension Migraines, terrible Tinnitus, neck & shoulder pain, bruxism (grinding teeth while sleeping), trouble swallowing @times, terrible earaches & so much more that I think are Lyme related. It’s difficult to say how much improvement I received from the Styloids removal. I still don’t feel that great. I hope to continue to receive some benefits from the surgery over time. If I could get my Lyme disease under control I might be able to see what relief I gained from the Styloidectomies. Sorry so long & probably TMI. I just haven’t posted anything in a long time. I was hoping to share a wonderful “I feel Fantastic after my surgery”. Getting there will take some time if at all? Hang in there everyone.
Sorry to hear that you’re still having so many issues, Crystal, especially after 2 surgeries. I’m 2 years post-surgery, and some of the numbness has only just gone, so I know it can take a while; you might still see some improvements I guess. I know for me everything still tightens up around the surgery site and gets painful if I forget to massage it with oil, even now. It sounds like yours was a really difficult surgery though, so maybe there could’ve been quite a bit of scar tissue from all the calcification and inflammation built up before surgery.
I know very little about Lymes, so I can’t say any more than ‘sending you a hug, and thinking of you…’
I’m sorry, too to hear of your current struggles & pain. My niece has Lyme’s Disease & takes specific antibiotics every other month (I think) to help keep the symptoms at bay. This routine seems to be helping her.
Ear_Mom, who has posted on this site, wrote a book about her son’s ES journey. He also has Lyme’s Disease which was treated w/ antibiotics & put into remission. You could email her privately to get info about what regimen helped her son. Look her up under the MEMBERS tab & click on her name if you want to email her privately.
For your TMJ & other facial issues, try to find a myofascial therapist in your area. I don’t know if insurance covers their services but myofascial therapy can be a big help for restoring soft tissues that have been damaged. It would probably help your migraines as well.
Ears
Ive had bad ear Pain for 1 year now. It all started with a bad sinus pain/pressure then all of a sudden my ears felt super full and the doctors said i had ottitis media But the “infection” settled and my ears look normal inside besides the fact that i was left with tinnitus and the pain that never ever goes away…
Throat
When i yawn sometimes i notice like a click in my throat on the left side only but the pain i feel is on both sides (the left side hurts more). I also notice that it feels like my swallow has closed up a little bit. There have been times where i have almost chocked on meat (feels forced).
Neck
Mostly under my jaw and it can be debilitating to the point where i cant speak much because when i physicially open my jaw i feel the pain under my jaw, throat and face (tingling and burning).
Tommorow im going into NYU Langone for an appointment with Dr Delacure (head and neck surgeon) have read some good things about him.
Sometimes I think to myself that i cant imagine anyone else is going through what i go through daily but when i come here and read some posts it reminds me that im not alone. In that moment of pain and dispare we just tend to forget but support groups like this one are so important and could save lives…
I’m so glad you have an appointment w/ Dr. Delacure! That is FANTASTIC! I hope he’s able to answer your questions & put your mind at ease about surgery for ES. The pains you describe are all symptoms I had w/ ES. They all went away after surgery, well mostly. I still get an occasional nerve twinge here or there which reminds me of how far I’ve come since my ES diagnosis. These twinges make me thankful for the recovery I’ve had & how normal my life is now compared to what it was when I had ES.
I dont remember what it feels like to live without pain. I dream sometimes that i am healed but its only an illusion. SO many doctors dismiss ES, but as ive seen you dont know unless you have it because you could have a whole lot of symptoms where in which you find yourself like myself being checked by anumber of specialists in different fields but none know about ES so they just hit a road block, i dont blame them, its our job to spread the word
Dr. Samji (in California) did my surgeries - the first in 11/14 & the second in 8/15. Would have had the second one in 5/15 but had a serious cycling accident the week before my surgery date so had to postpone surgery for 3 months. I was devastated! I was 58 when I had my surgeries so a bit on the older side. I’m back to being very active. Am participating in a 1000k event now (635 miles) that spans from 5/1-8/31 - The Great Virtual Race Across Tennessee. It’s been so good to have an excuse to push myself out the door everyday. I did a hard 17 mile hike yesterday. This is not to brag but to show how much difference having my styloids removed has made in my life.
Congrats, those are some heavy miles! blessing! I just fight through it in my runs and its the only thing that helps me forget the pain because of the adrenaline thats why im counting the days for warm weather. After i began to get symptoms i did everything twice as hard because i was trying to beat what ever it was that was happening to my body.
Ive thought of maybe setting up an appointment with Dr Samji but its complicated to go across country since im in the NYC area but if i have to I will go in a heart beat. Went to Dr C now im going to NYU for another opinion.
Isaiah, Do you think its a bad idea to tell the doctors of all the previous doctors seen. I feel like they get over whelmed with information and history.??
Simple is best. Stick to the symptoms that bother you most but don’t bring a whole “laundry list” of every little thing you think might be from ES. The list you posted earlier today would be a good one to share. Your vascular symptoms are significant, however, if you talk about them, don’t be alarmed if Dr. Delacure is dismissive. Just take it in stride & expect improvement once you’ve had surgery. No doctor can/will guarantee specific surgical results.
I live in CA near Dr. Samji’s office/the surgery center he uses. I was very blessed to find him early in my Eagle’s journey. I can understand the difficulty of traveling so far to see him. I will say he is an amazing doctor & person, but even he is skeptical/dismissive about some of the symptoms that come w/ ES being caused by ES. The proof is when those symptoms go away after surgery - which they often do.
I’ve handed my spread sheets of my history/symptoms to the doctors and they look overwhelmed. I always tell myself I won’t say too much but I end up talking away too much instead of letting the doctor talk about it.
If I’m not fully convinced tommorow then I might just get an appt with him as well its just not first choice because of the traveling but we’ll see.
