I’m sorry this continues to be your plight @stuuke. You can try calling repeatedly over the period of an hour. One of our members said she called 5x before the phone was answered by a person.
I’ve had the best luck getting my calls answered if I call late morning (11:30-11:45 MST) or after 3 but before they close at 4. Last time I had to call a couple of times a few min. apart to get someone to answer.
It’s very unfortunate that Dr. Hepworth’s best laid plans for a better patient experience haven’t materialized. If things haven’t changed by the time I see him end of Oct. I’ll have a chat w/ him about it.
Still zero response from Dr. Hepworth’s office. I just tried calling again and was able to leave a voicemail. I’m emailing again as well. They just completely dismiss me as a patient. It’s hard enough when friends and family don’t understand the pain you’re in but when doctors that specialize in this ignore you it just really takes your hope away.
I finally heard back from Dr. Hepworth’s office. I thought I’d send one last email before I move on to other options. I wasn’t nasty but just said that I’ve tried contacting them multiple times through phone, text and emails with no response for over two months and that it is no way to treat people with chronic pain. The person that contacted me was very nice and did apologize. They booked me a Telehealth appointment with Dr. H for December just so I’d have something on the books before I got off the phone. I told them I’d at least like to know the results of my imaging before then and would like to schedule the muscle block/botox if Dr. H felt that was the best next step. Not great progress but at least it’s movement. For others with Blue Cross they said that they should be able to work with them by mid-November. I might start reaching out to other doctors anyway since things with Dr. H have been so frustrating. I just don’t feel like wasting another 6 months to a year.
@stuuke - Congratulations on being tenacious & keeping on Dr. Hepworth’s office. I hope this is the beginning of a new relationship with him - one that includes prompt responses & greater ease in getting much needed appointments.
I see a reference to SCM in your posts. I had a discussion about this on another thread about how the accessory nerve can create that problem.
I was theorizing that a styloid might be causing an accessory nerve problem coming out of the jugular foramen or even further down.
You might ask Hepworth about the value of getting a 3d ciss or Fiesta C to see what is happening to your nerves.
So few have actually been able to get that scan that it seems we really don’t have enough info to know if it can show the multitude of issues. In theory, it should. So many here seem to have possible vagus nerve issues it would seem that scan should help some people.
For those of you with a Trigeminal issue here is an example with one of the cranial nerves from India where it is easy to get a 3d ciss mri
" A 77 years Male with bilateral #TrigeminalNeurolgia MRI 3D CISS images shows vascular loops intending bilateral 5th nerve cisterns segment and left nerve root entry zone "
P.S. there is another one I saw for this Trigeminal nerve. 3d-flash… three-dimensional fast low angle shot. mentioned by BJR journal
Thanks so much for the suggestions. I haven’t heard of those tests but I definitely feel like my issues come from a nerve, muscle or both. What is the treatment if they do find something from the 3d diss or Fiesta C? Are those tests available in most areas or are they specialized enough that I would have to travel? I really appreciate the suggestions and thanks for reading through my posts.
This test has been getting a lot of talk recently because I am determined to get one.
My first step was calling radiology dept scheduling to find out if they could do it. A local mediocre hospital tech knew exactly what i was asking about.
Next step finding out everything i can to convince a doctor i need it. I believe many doctors have no clue about the test. In India you can even go through a service to order it on your own and it costs less than 100 US dollars. One place was less than $60. In United States no way it would be billed that cheap.
Hepworth may say to you not needed because you are candidate for surgery anyway.
My counter to that is it might provide a differential diagnosis. The name of the software depends on brand of machine. Thus fiesta c or 3d Ciss.
Each case of eagle sydrome can be so complicated with multiple issues I feel like the test would be instructive.
If you plan on asking Hepworth about it be prepared to explain what it is and why you want one. He may not even know about it. Certainly, it isnt standard test for him given that so few here have actually had one.
In the end this elusive holy grail test may turn out to be worthless for most of us but we dont know yet. And it certainly might help a few get a different diagnosis. One person here just had it. They spotted an issue but made no mention of the vagus nerve. Sometimes radiologists have to be directed what to look for.
Those MRI scans are sometimes used to see if Trigeminal neuralgia (or other nerves) is being caused by a blood vessel compressing the nerve. If so, the treatment for this is microvascular decompression surgery (MVD), where often a mesh is put in to separate them…not always successful. One of our members @1speechpick had this surgery, & we’ve had members in the past who had this surgery before ES surgery thinking it was the issue when it wasn’t.
It would be interesting to get Dr Hepworth’s opinion on whether the scan is helpful, & if he’s used them, as @JugularEagle has said it’s difficult to find anywhere which does them!
There’s a Ben’s Friends Facial pain group which is where I found out about the FIESTA MRI, here’s a link to that if you’re interested: Finding support for facial pain? Connect with people like you. - Living with Facial Pain
Yes, this is the exact surgery I had. I had MVD surgery to address arterial compressions involving the trigeminal, glossopharyngeal, vagus, and accessory cranial nerves. ES was ruled out for me. 2.5 years post-MVD with a nightmare journey, I’m now doing great. I’m here to help provide info to anyone that needs help!
I’m so glad your MVD surgery has turned out to be so successful @1speechpick. I remember how awful your journey was early on after your MVD surgery. What a relief to read how well you’re doing now! Thank you for coming back to let us know!