I just had an appointment with a ES doctor specialist. He says I should get surgery but the thing is: my ct scan only shows elongated styloid on left side but I have symptoms both sides. Is that possible?
ear fulness/pressure on both sides
clicking noise when swallowing or yawning on both sides. But:
left ear pain
left soft palate tightness
-left neck moderate pain
tinnitus on left side.
Doctor and all my family member want me to jave surgery. I don’t know what to do. Please any comments appreciatef
Surgery is the only way to “cure” ES symptoms. Sometimes the pain and symptoms from one elongated styloid process can affect both sides (it is called cross over pain when the symptoms are on the opposite side from where the elongated styloid is). There is also the possibility that even though your right styloid isn’t too long, it might be curved more than normal or twisted, very pointed or very thick. Any of those features in a normal length styloid can cause ES symptoms as well.
Has your doctor mentioned if you have calcified stylohyoid ligaments? Another possibility is that your s-h ligament is partially calcified on the right side & is causing problems instead of your styloid.
I do agree with your family & your doctor. You should have surgery as it will help relieve the symptoms that are making you miserable now. I had two ES surgeries. One in 2014 & the other in 2015. My ES symptoms are gone now, and I can do all the things I enjoy (which I couldn’t do when I had ES symptoms).
Do you feel confident with your doctor? And has he done many surgeries? I do agree that the only cure for ES is surgery, but we do caution members to make sure that doctors know to remove as much of the styloid process as possible, that they smooth off anything which remains, & check that they monitor nerves during surgery. And as Isaiah says check that if there is any calcified ligament then that will be removed too. But if your other side is angled, wide or very pointed then you may still get symptoms from that. Are you able to see the report & images from your CT?
Many thanks Isaiah!!! You are very kind! Really! When I get better I hope I can be at service to others as well.
The thing is that I have some symptoms that I do not know if it is related to ES. From time to time I can hear my eyes movements and that is really awful. I have not seen anybody in ES groups reporting this kind of symptom. But that is inttermitent. Most of the days I do not have it. But today I am experiencing it on my left ear ( the ear that the elongated styloid is) .
The only symdrom that I have seen people with this kind of symptom is the dehiscence superior canal and my exams showed positive for this symdrom. Dehiscence symdrom also can cause ear fulness and pressure.
My ES surgery is scheduled for August 13th and I am freaking out because I do not know what to do. My styloid process is only 3,3 at maximum. The ES doctor said to forget about dehiscence syndrom because I do not have oscillopsia.
I really do not know what to do. Any surgery involves risks. I just feel I have to do more research. Though Dehiscence surgery is much more complex and involves more risks, and maybe I should do ES surgery first but I see so many cases in the groups that got worse. As you can see I am really confused. Thanks for your patience and time!
I do not know if I feel confident with my doctor. He has some experience with eagle syndrom. That is for sure! But I do not know exactly how many surgeries he has performed. I just feel is very convenient for him to suggest surgery for me as we only can know if it is ES after surgery. But I know he operated one of our members and it was a success. But this member had around 6cm styloid process on both sides. I have only one side and it is around 3 cm.
But thanks Jules. If I do the surgery I will follow all your advices.
I am sorry for your struggles and confusion clouding your next steps, it is a scary place to be.
Just wondering if you have positional headaches (improvement or worsening with either being upright vs. lying down) or if you have clear fluid coming from your nose, can be as innocuous as a runny nose that comes now and again but never goes away and you aren’t “sick”. This can be signs of a CSF leak. Also any chance you might have symptoms for Ehler Danlos syndrome, very hyper mobile joints etc? Your diagnosis of superior canal dehiscence would fit in with this collection of other problems and can all be cousins to ES which would be good to know about. Don’t mean to add more to you plate and it doesn’t likely change your surgery plans but is good information to think about. Hoping all turns our well for you!
Thank you! But no to all your questions. Headache is not my main issue. I used to have improvement on my ears pressure when lay down but for the couple of last months not anymore especially in my left ear where I am feeling excruciating pain. I do not have any nose fluid at all. I already confirmed I have no csf leak neither ehler danlos.
Ha! I understand Really good to hear you have asked the hard questions and that should help to strengthen your resolve in your decision have the surgery for ES. I will be sending you all good and healing graces, be well!
I’m sorry that we can’t give you the answers you’re searching for- surgery is not an easy decision for any of us, but sounds like an extra tricky one for you! I remember some discussions about Dehiscence surgery before, one member was diagnosed with that & had surgery, can’t remember if it was as well as ES or instead of- you can search the past discussions using the magnifying glass icon, you could have a look but not sure if it’ll be helpful or make you more confused…
I would say that although you’re in pain, take your time with this decision, & don’t let anyone rush you. Some members have had injections of lidocaine/ steroids into the area which can help while they wait for surgery- I don’t know if your doctor can do that? It doesn’t always work, but if it did it might help with seeing what symptoms are likely to be ES. (It can only be done a few times even if it does help, so isn’t a cure though, just a temporary fix). Thinling of you…
Thanks very much Jules. I will do everything you suggested. I already had a while ago shenopalatine and glossopharyngeal nerve block but that took away my symptoms only for an hour. ES doctor says that validates his diagnosis. I don’t know if that is true. I live in Brazil and people here can be dishonest. I don’t know if you know what I mean. He said all his ES surgeries was a success. He is from another city so if I were to do the procedures you mention I will have to look for another doctor. Well, many things to weight in and my pain and other symptoms are getting worse. Thanks very much for your opinion and suggestion. I appreciate.
When you post a reply, at the bottom of the text box on the right there’s an upload icon; you can use that to upload images.
It gets confusing with styloids & calcified ligaments; radiogaphers get muddled themselves with the way that they measure! But this does sound as if there is some calcification of ligaments, so that would need to be removed as well to help your symptoms.
Doctors do use the injection to confirm ES sometimes; ES can cause pain in the Glossopharangeal nerve, so it sounds as if he’s being truthful, hopefully.
Some doctors think the styloid process itself doesn’t elongate but that the appearance of styloid elongation is caused by calcification of the stylohyoid ligaments (which run from the tips of the styloids to the lesser horns of the hyoid bone). Sometimes the stylohyoid ligaments calcify from the bottom up i.e. from the hyoid bone up toward the styloid & sometimes from the top down i.e. from the tip of the styloid down toward the hyoid bone. It sounds like your situation is where the calcification started at the tips of your styloids & went toward your hyoid bone. That’s why your diagnosis says you have stylohyoid ligament calcification.
You can post your CT pictures by clicking on the symbol that looks like an up arrow w/ a line under it. This will appear at the top of the box where you write your post. It will be near the icon for emojis. Once you click on it, you’ll need to select the location of the picture I.e. where it is on your computer then select the picture to post. Then click the “upload” button & your picture will post.
Great pictures, tatianac! I’d say you’re a candidate for surgery, & it should make a HUGE difference in how you’re feeling. It looks like your styloid on the left is elongated & that you have some calcification of the stylohyoid ligament on the right. That’s my non-professional opinion, however.
We have found over the years that the external surgery usually gives a better & longer lasting recovery from ES symptoms & here are the reasons we advocate that approach:
The external approach allows for the nerves & vascular tissues to be monitored during surgery to help keep them from getting damaged & provides better visibility of the styloid & stylohyoid ligament during their removal. The intraoral approach does not provide opportunity for nerve/vascular tissue monitoring nor does it allow for full visibility of the styloid/s-h ligament.
The external approach allows the styloid process(es) &/or calcified stylohyoid ligament(s) to be completely remove from skull base to hyoid bone. Surgeons who do the intraoral approach usually only cut the tip off the elongated styloid (which can leave a chance for regrowth). There is nearly no access to the s-h ligament intraorally.
Caveat - we recently learned from a forum member that the styloids & ligaments can be more fully removed through the throat (intraorally) if several incisions are made in each side of the throat (for bilateral ES, which you have). This does create a higher possibility of post op infection & slower recovery for the patient.
The recovery time for either surgical approach is about the same. Surgeons doing the external surgery try to make their incisions in natural neck creases so when healed the scars are nearly invisible. I can send you pictures of mine if you’d like to see the end result.
If you are not fully comfortable w/ your surgeon or his approach, I (we) recommend you get a second opinion from another surgeon who does ES surgery. It’s critical you are comfortable with the surgeon doing your surgery & with the approach that surgeon will use. It sounds like you may have at least one other option in your country based on the posts by Brazilian & Swimmer. If he is not too far away for you, he would be a good choice for a second opinion.
Many ES patients in the US have traveled hundreds or thousands of miles to see the few doctors in our country who have a lot of ES experience & have had their surgeries done by them.
I hope this isn’t too much information & that it helps you make the best decision for you.