I’m brand new here! Mom of a 2 year old and one on the way. I have been having medication resistant headaches for upwards of 3 years. This year has by far been the worst. I’ve had 2 MRIs, 3 CT scans, a spinal injection (2 bulging discs), seen two ENTs, Neurology, Spine care, pain management, no one knew what was going on. My mother was diagnosed with ES 5 years ago after suffering for 30 years of headaches, her dentist noticed elongated styloids on her pano. She saw Dr Lamarre at the Cleveland Clinic and he injected the styloids with Benzocaine to diagnose her. I started comparing symptoms and behold we are the same. A local ENT, loosely familiar with ES ordered the CT scan and gave me a tentative diagnosis. I flew to Cleveland and saw Dr Lamarre. He gave me the injection that diagnosed me with ES. I have a virtual follow up with him next month. After finding this community I read through the doctor list to see Lamarre wasn’t listed. I thought I’d look closer to home for ease of travel, especially for pregnancy and financial ease. I called multiple doctors on the list and they are not seeing ES patients anymore. In Oregon Dr Khatib is no longer seeing patients for ES, but in the same practice Dr Allen Cheng is seeing ES patients. Is anyone familiar with him? Or Dr Lamarre for that matter?
I live in Idaho and I’m hoping to find someone who can provide steroid type shots to get me through my pregnancy as I’m desperate for relief! I take gabapentin, 600mg at night to ease some of the pain, but it’s not cutting it. THANK YOU ANYONE WHO CAN HELP ME!!
@Malley - Welcome to our forum, & I’m sorry for your pain & the timing of the manifestation of ES during your pregnancy. It has been noted on here by other members that pregnancy hormones tend to ramp up ES symptoms so that’s probably why yours are worse right now.
Dr. Lamarre used to be on our Doctors List, but he was likely removed because we heard he was no longer doing ES surgeries. I’m sorry we need to take Dr. Khatib off our list now, too.
I don’t think Dr. Cheng’s name has come up on our forum, but it’s worthwhile for you to consult with him & find out what form of ES surgery he does. We recommend the transcervical (external/through the neck) approach vs the intraoral approach because overall we feel it’s safer, the styloid can be cut back shorter, stylohyoid ligaments, if calcified, can be removed, nerves can be monitored during surgery, recovery is less painful, & outcome overall is often better. It’s good to know what percentage of his patients have had good recovery after surgery & how long he believes it takes to recover (i.e. 2 weeks is unrealistic, 2-6+ mos is realistic). Also find out how many ES surgeries he’s done - many is the best answer, but if it’s, a few, you may want to look further for someone more experienced.
A local ENT should be able to do the injections for you. They’re usually done through the tonsil area using ultrasound guidance. I expect many ENTs have done this type of injection for nerve pain in the neck/throat/face w/o knowing the cause of the pain.
Have you tried Dr. Patel in OR? He has done ES surgery for several of our members who were happy with their outcomes. I don’t recall if he does the introral or transcervical approach.
Dr. Samji in San Jose, California, is very experienced & does video consults so you could reach out to him if you want to talk to someone with a lot of ES surgery experience.
I’m sorry not to be of more help.
So sorry that you’re in this pain & pregnant, that’s really rough! I agree with @Isaiah_40_31 about the doctors she’s suggested & the info about the injections. I hope that you can get that done soon 