I jumped on this site the evening I got diagnosed from a dental exam this month. This was a VA exam for TMJ issues that I believed was caused by neck/facial trauma received in the military back in 1987. Now in 2019, at the age of 51, I have experienced over 10 yrs of neck pain, jaw pain, tinnitus, ear pressure, chronic sinus congestion, headaches and so much more. I have been a nurse for over 20 yrs and never heard of this syndrome and was attributing my symptoms to separate jaw and neck problems. It’s amazing that potentially all of them could be due to this one condition. The dentist showed me and it looks like the right side is calcified the full length and the left side just a bit, which explains why everything is so bad on the right side. So I am trying to do as much research as I can, and will be going to my primary physician to get additional studies done (really concerned about the vascular complications) and a referral to a specialist. I’m sure there is limited knowledge in the small town in Colorado I live in, so I’ll probably have to travel elsewhere to find someone with experience. I’m glad this dentist was so thorough in his exam to make this diagnosis, but may have lost my claim for VA benefits since it may be a separate condition. Although I did read there might be a correlation between ES and trauma. So that’s my situation. I hope to learn more thru this site and am willing to share what I learn and go thru. Again, getting this diagnosis explains so much of what I’ve experienced in the past 10+ years, I just am amazed, but glad I now know. - Ralph
Nurse here too. Based in NYC. Just advocate yourself like we use to advocate for our patient. Because this not a disease, its a anatomical obstruction and a lot of cranial nerve involved and affected and give a lot of vague symptoms thats hard to diagnose. It was tricky and surgery will help you but will not bring everything back to normal. Especially in your case your suffering with this for 10 years but surgery somehow will give quality of life your looking for, surgery still worth it and nothing to loss. One thing that i realized is that we still need to be grateful because this is benign obstruction and not malignancy. A lot of people and my patients suffered and lived with pain worse than this and still moving forward everyday with a smile. Goodluck and best wishes.
We’ve had quite a few members who’ve tried to get treated through the VA system (? Is that the right terminolgy? I’m from UK!) & found that hard; I don’t know if there’s any chance of you seeing a doctor outside the system? Have a look at our Doctors List in the Doctors Info section to see if there’s anyone you could be referred to.
There is a possible link between neck trauma & ES, you’re right.
Hope that you can get a referral & treatment soon!
I was successful after almost 4 years of VS testing. Through a community consult you can get up to six month going to non-VA doctor especially if doctor advocates goyt your referral as mine did.
If you want to stay in your state, there is an excellent surgeon who’s done ES surgery for several of our members - Dr. Hepworth. His contact info is on our US Doctors list (use the gray magnifying glass icon above & search term - US Doctors).
So glad you’ve been diagnosed. Moving forward to getting this taken care of efficiently requires referral to a doctor “in the know”. Dr. Hepworth is definitely “in the know”. Hopefully the VA will be cooperative & allow you to see him if you’re able. Other excellent & very experienced ES doctors who are outside of your state are Dr. Samji in CA, Dr. Cognetti in PA, Dr. Milligan in AZ & Dr. Nuss in LA.