My son, Ben had his second styloidectomy on May 8, when Dr. Fargen operated on the left side. Unfortunately, some of his symptoms have returned, and he is still having the episodes that have been referred to as “pseudo-seizures.”
After his first surgery on the right side, we saw meaningful improvement. His episodes decreased by at least 50%, along with improvements in several other symptoms. However, after the second surgery, the episodes and other symptoms gradually increased again.
I messaged Dr. Fargen more than a week ago asking what testing should be done to make sure there is no remaining or additional compression. Ben also has calcification involving his hyoid bone, so I do not know whether that could be contributing to his symptoms.
Dr. Fargen’s office originally contacted me and said Plavix could be considered. However, Ben frequently falls, and when he is in pain he may hit his head, so I do not feel that a blood-thinning medication is safe for him. I responded by asking what imaging or other testing we should pursue instead, but I have not yet received an answer. I plan to call the office again tomorrow.
Because Ben is a nonverbal adult with autism and cannot cooperate with most testing, he will need to be sedated for any detailed imaging.
The surgeries themselves went very well, with minimal swelling and no visible external inflammation. We were told that the compression was widely decompressed. Dr. Fargen was able to shave the C1 area on the right side, but he could not shave the C1 on the left because of the position of jugular vein and the risk involved.
Has anyone experienced symptoms returning after bilateral styloidectomies? What imaging or testing did your doctors order to evaluate for remaining jugular compression, residual styloid, C1 involvement, or hyoid-related compression? Any suggestions or experiences would be greatly appreciated.
