Hi everyone, these are my 3D images of both styloids. Symptoms are worse on the left but I have them on both sides. Worst are non stop headaches with pressure and deep nerve pain on the left side of the face in the maxillary area. I have tons of other symptoms but these ones are the worst and most intolerable ones. I do have an appointment scheduled with Dr.Hackman and this CT from 2 years ago but wondering if I should get the one with contrast to check for vascular compressions due to headaches. On the other hand Iād like to avoid the contrast if I can. For those with experience seeing Dr.Hackman is regular CT and symptom description enough to diagnose or rule out ES? Has anyone had to get a CTA after the appointment with Dr. Hackman in addition to regular CT? Thank you in advance for any feedback
Nasty styloids, @Elena! The left one is long & wavy & the right is long, thick & looks close to your maxilla (though that may just be from the angle of your head).
Iām sure getting those spikes removed will help you feel better. Call Dr. Hackmanās office every few days to inquire about a cancellation. This technique has worked for several members.
Thank you so much for your comment Wendy! I keep trying to tell myself itās not ES because of lack of āclassicā and most common symptoms but I at least have to hear an opinion of one of the actual ES experts that does surgeries, I hope Dr. Hackman will be able to rule ES in or out. Coincidentally my husband is being transferred to NC for another job project for about a month long so Iām hoping to get in within that timeframe as Dr. Hackmanās office is only an hour away from where we will be staying so that would save a long distance trip if that could happen. Fingers crossed
Hello @Elena
although mine were not reported as too long,the left side was the main area of veinous compression but my right side was the most painful side daily.
I think our individual anatomy can contribute a lot to how the styloids impact the nerves, veins and arteries from person to person. And in my case the Ctv and the veinogram were the most telling of studies. Showing compression of the IJV between styloid and c1
I did have also have previous cervical Ct scans with and with out contrast over the many years, but no one had noted anything of importance till the blood flow studies showed high grade compression
Boy I feel for you on the headaches as well, can be so unbearable times.
I did finally find some relief from them(headaches) after I was prescribed plavix, and although not a cure for venous compression , I was told that if it helped my symptoms that the styloidectomy should also reduce my symptoms. And so far so good one month post opš
Fingers crossed you can get in with Dr Hackman during your timeframe and that your appointment is revealing.
Best wishes
They are nasty looking styloids! No doctor will say for definite that surgery will help, but given your styloids & the CT I would expect that the styloids could be causing symptoms!
Headaches can be caused by vascular ES but not always, and it sounds as if your pain is mainly nerve related, so personally I wouldnāt worry about getting a CT with contrast.
Hope you can get a cancellation appt!
Hi MekanX and thank you for your feedback, I appreciate it. I always had headaches since I was a teenager but they were never disabling and long lasting like the ones Iām having now, basically 24/7 with varying degrees of severity. They also responded to medications and we short lived. My left side is worse with nerve pain as well but headaches and eye pain on both sides as well as face pain. Iām so happy to hear your surgery helped you, I hope you continue healing nicely and get complete relief of your symptoms, I know how debilitating daily pain can be. Thank you again for your response and your kind wishes, Iām so grateful for this forum and the people I get to meet here every day. All the healing vibes to you
Hi Jules and thank you for your comment, indeed nerve pain is one of my main complaints but headaches are very severe as well. Sometimes I canāt even tell where nerve pain end and headaches start. My eyes hurt so bad and eye sockets feel like they are lined with electric barb wire, plus constant pressure pain in the face. I hope itās all part of the styloid compressing surrounding structures/nerves/arteries and can be resolved with surgery. Itās a very surreal experience to say the least and nobody can understand unless they went through this themselves. Iām very grateful for this community of kind people sharing experiences and helping each other on this difficult journey.
@Elena, I didnāt have the type of eye pain you have but I think Iāve mentioned I had the feeling of extreme pressure behind my left eye. It was enough that I checked the mirror several times a day to see if my eyeball was moving forward out of the socket (which it never did). The pressure behind my eye was gone when I awoke from the surgery where my left styloid was removed. Iām so thankful!! I hope for & expect youāll have a similar experience with much of your pain once your styloids are gone.
Thank you Wendy, your reference to looking in the mirror to check on your eye reminded me how back over 6 years ago when my symptoms just started I had a constant sensation of ādroopingā on the left side of my face but when I looked in the mirror my face always looked normal. It felt like a Bellās palsy but without the drooping. That sensation of numbness/drooping eventually went away and got replaced with sensation of vice grip on my maxillary molars and subsequent pain that would come and go for no apparent reason. Iām so glad your surgery fixed the eye pressure you had, I canāt imagine how miserable it must have felt. Iām hoping if I get to the surgery stage Iāll at least have relief from my worst symptoms, Iām even ok to live with different weird ear sounds, throat clicking etc But would be a bonus if everything goes away
Praying that you can have surgery and it does take the pain away