I had my bilateral styloidectomy back in June 2022.
It seems to have solved my vascular issues and for the most part things were really looking good. I was never fully pain free, specifically right where the surgery was for both sides. Always felt sore, tight achy and would radiate to my cheeks, nose and scalp.
I put off doing any more imaging and just stuck to amitriptyline and pt for management and it seemed to be working, but things have taken a turn for the worse over the last few weeks.
It feels like there’s a rock inside where the ear incision were, on both sides. It’s extremely tight and now it is causing a terrible pain to radiate to the front of my face, namely my cheeks.
This is the first time since my surgery that the pain has gotten so bad that I had to actually stop working and take a break. It’s triggering all types of PTSD of what things were like when I was disabled.
From everything I gathered, this is atypical for this surgery. To have this kind of pain this far out is not normal.
I go back and forth on what it is. Sometimes I think inflammation, but I keep leaning towards some kind of nerve damage. Maybe atypical trigeminal neuralgia. The part that’s confusing to me is that it’s very similar on both sides, which I find odd for something as fluid as nerve pain.
I tried muscle relaxers and it’s not doing anything so I’m going to discuss with my Dr plans for gabapentin and an MRI of the area.
I’m not really sure what to tell myself anymore and I’m hoping something will change for the positive in the near future.
I’m am sooo sorry this has happened, @elijah. It is atypical for that level of pain to recur once the styloids are removed. I agree w/ you, it seems like bilateral trigeminal nerve pain. The only thought that comes to my mind is that your body has laid down scar tissue bilaterally that is compressing or irritating the trigeminal nerve on each side. A neurogram/FIESTA MRI is the type of scan you would need to specifically look at nerves & see if they are compressed or what is causing irritation. Unfortunately, there aren’t many of those machines in the U.S. so you might have to travel again to get that testing done.
I looked up FIESTA MRI locations & nothing came up but I did fine this when I looked up neurogram: https://www.columbiaradiology.org/patients/services/musculoskeletal-imaging-and-pain-management/mr-neurography
That would be a place to consider. Your doctor probably has ideas of where (s)he wants you to go, but please mention the FIESTA MRI &/or neurogram options as you’ll get more & better information from one of those than a plain MRI or even MRI w/ contrast.
Good that the vascular symptoms have improved post surgery, but really feel for you that you’re now in alot of pain…as @Isaiah_40_31 says it sounds like it could well be scar tissue causing nerve pain, so hopefully the medication you’re going to ask for will help. As you had bilateral surgery it could have happened both sides? Other members have tried cold laser therapy for scar tissue, that might be worth looking into, but there are precautions to take when having this in the neck area, so you’ll need an expert!
Is there any swelling in the area at all?
Sending you a hug & prayers for this to ease
I am so terribly sorry for your situation…My heart hurts for you. I read some of the situations that some people are still dealing with and it hurts me to read all of the problems and pain that they are still having to deal with. I guess I was one of the lucky ones. I had gone for 17 years without a diagnosis and when I moved from Houston, TX. to Oklahoma City, OK., it is there that I found Dr. Greg Krempl at University of Oklahoma Physicians. It was such a long and painful journey. I gave up so many times and all I wanted to do is just go to sleep and die…
I didn’t have the facial pain or allot of the heart situations that I read about in this blog but, I was suffering with the sensation of something stuck under my tongue and poking in the back of my throat. I had the surgery and my surgeon, Dr. Layton Runkle did the surgery. He took out my tonsils and cut out the calcified styloids through my mouth.
It was the surgery from hell! I was alone at home recovering while my husband worked and my two sons were in middle school. The pain was there for about 4 months but, it was slow because I am a Diabetic and I heal very slowly. Once I got over the 4 months, I was able to take it slow and with time, all pain went away. I thank God that I was fully healed. I still eat very carefully and I don’t gulp down my food. I don’t eat foods like fish for fear of getting a fishbone stuck in my throat, That’s what it felt like for 17 years so, I pay attention to what I am eating.
I hope to encourage you in this journey for your healing. Keep on pursuing until you have success. Pray and ask God to hear your petition while you wait for an answer. Sometimes that was the only thing that brought me through. He answered me and He can answer your plea too.
