I saw Dr. Hepworth today to go over my MRI’s. Interesting new development – after all this time and all this Eagle discussion, he showed me on my brain MRI where a blood vessel is compressing my trigeminal nerve on the left side. I have trigeminal neuralgia! A diagnosis nobody wants, but I’ve apparently had it for going on three years. And while I don’t love my symptoms, they aren’t the horror show that one typically associates with TN. And the good news is that it MAY be treatable by radiation, without surgery. So I guess I don’t have Eagle, although I do still have Ernest Syndrome on the right side. Don’t know if this is the end of the story, but for the moment it appears to be the end of the Eagle chapter.
WOW! What great news to know what’s causing your TN & that taking care of the problem is far less invasive than surgery! I’m so happy for you & hope that you get amazing results from the treatment. Dr. Hepworth is such a great doctor & so very thorough in his investigation of each patient’s symptoms. I’m so thankful we’ve become “acquainted” w/ him here. He is a valuable resource for our ES community.
Please drop in to let us know how you’re doing from time to time.
I hope that if you have anything done to the blood vessel it works! Good that Dr Hepworth thinks it will help…Ben’s Friends do have a Facial Pain group you could have a look at for an idea about treatment if you need to.
Is there any plan for the Ernest Syndrome? I don’t know much abot it but only that the symptoms are similar?
Let us know how you get on!
@Jules – me too!! Thanks for the heads up about the facial pain group – I will check it out! I know so little about TN. And I’ve been nervous to google it too much, because ever since I first learned about Trigeminal Neuropathy years ago, I’ve had kind of a phobia about Trigeminal anything. I’m glad I’ve had nearly three years of symptoms before diagnosis, so I know exactly what I’m dealing with.
Injection for the Ernest Syndrome did nothing, but I guess I always have the option to remove the ligament. I’m really in no hurry, symptoms aren’t too bad. Of course, every time I say that, they get worse!!
Bopper this is great you got some answers and can now target a fix.
Ive checked into the use of radio-frequency ablations myself in the event I cant get a handle on the nerve pain in my jaw. Ive had alot of injections myself and have not gotten a huge amount of relief except for the temporary nature of nerve block. The steroids seem to help but dont last very long.
Please let us know how you progress. best of luck on the next journey.
Thanks! I dug a little deeper into this and discovered that the fix he is proposing is the Gamma Knife, to kill that section of the nerve. Which is a level of drastic I’m not prepared for yet. I’m not entirely convinced yet that this isn’t related to the ligament. We will see what the neurosurgeon says on the 14th. I’ll keep you posted!!
Hmmm…Gamma knife treatment does sound serious and killing a section of nerve may or may not help as nerves do regrow so even that could be a temporary fix. It will be interesting to know what the neurologist tells you. Thanks for being willing to share your news with us.
Yes, gamma knife. I am hoping I don’t have to go there myself. I had long talk with my dentist last night and this was discussed. He as well as my TMJ specialist feel that the trigeminal nerve is being pinched by the condoyle. He said the trigeminal nerve branches can be tricky to isolate area of problem. I know I have problems with the stylomandibular ligaments too. Injections have done little also but neurologist suggests it takes a series of injections so I will try a few more and get appliance to see if it dials back my ligament issues. Please keep us updated on your progress. Best of luck
So fascinating. I have had TMJ issues for 15+ years. So hard to find a good specialist. I have no idea if my condyle is involved as well. The last specialist didn’t think so, said the nerves didn’t line up. But he’s an orthodontist, so sometimes I’m a little skeptical that he has the requisite level of expertise. I have noticed that when I quit wearing my splint, my symptoms seem to get worse.
I know what you mean about being skeptical. Having spent $$ on appliance in the past that really didnt do much has me feeling the same way. I think alot of dentists/orthos out there just throw standard appliances at patients and really dont know what they are doing and just make money off people. Im not sure how the ortho could determine your nerves don’t line up? Did he look at a Ct scan of your jaw to determine that?
I more recently (5 years ago) saw specialists at University of WA Oral Health Center and they did a CBCT. Another patient on this blog told me they were kind of old school and just threw simple appliances at her and werent really very aggressive and useless to her. It confirmed what I had been feeling…that they were not all that helpful. It just so happened that Ct scan showed calcifications and elongated styloids.I only learned last Jan that when a neurologist suspected Eagles did I ask them to review the scan. Even though they found it, they still didnt really believe in Eagles or that the evidence meant anything. Luckily I pursued other avenues and did get ES diagnosis. This other patient told me about a TMJ specialist here in Seattle and raved about him. I went and saw him about 2 months ago and I was very impressed. He did another Ct scan and walked me through all my issues and explained at length what he thought was causing my pain. He convinced me that a permanent custom appliance would help re-align my jaw. I will bite the bullet and give it a try because I feel he does know what he talking about. Had he not been recommended to me, I would not have found him. Many put TMJ out on their shingle and have only a partial knowledge of it. Maybe over on the facial pain side they have a good list going of specialists.
Haven’t been on the Ben’s Friends Facial Pain site for a while, but they used to have a list of doctors, so I’m sure they still do- if you’ve joined you could ask for recommendations in a discussion other wise
I wish I could find a TMJ specialist like that in Denver! I have been through four – yes, FOUR – rounds of splint therapy. That’s around 15K that I’d love to have back! I am convinced that a lot of these guys go to weekend seminars on how to create a new profit center fitting TMJD patients with splints. I’m going to check out the facial pain side now.
Thanks – going to check it out now!!
I so agree that alot of these guys/girls go to weekend seminars and the splints are marked up significantly. Good luck on finding a good TMJ specialist! I only lucked out on finding this one in Seattle. It was another ES patient here whom told me about him. Like alot of things. right place at the right time…and the right doctor.