That’s frustrating… I had nerve pain meds (Amitriptyline) which helped with pain in my teeth & jaw, it hasn’t gone away completely with surgery but the numbness & tingling I was getting in my face as well has gone… I could’ve managed without surgery for that I think, but when I started getting vascular symptoms as well it was too much & I had surgery…
I agree with @Isaiah_40_31 that if you’re able it’s good to get more than one opinion.
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Thank you for your response. I’m glad you are able to find some relief. This is not nerve pain like you are taking about, but more of a heat feeling. I have had two opinions and they both say I am a candidate for surgery, but can’t guarantee it will solve the problem.
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@Hopefulhermit - Heat feelings/burning sensations are also a symptom of nerve irritation. We most commonly think of nerves causing pain, but they can also cause numbness, tingling, hot or cold feelings, “lightning bolt” pain zaps, feeling of something crawling on the skin, among other things.
No doctor will guarantee that symptoms will go away after a styloidectomy, but our experience here is that any symptoms being caused by the styloids irritating nerves will generally reduce or go away completely once the styloids are shortened & the irritated nerves recover.
Since medication isn’t working well to relieve your symptoms, & you have known ES, there’s a good chance your burning symptom is ES related & will at least calm down once your styloid(s) is/are shortened.
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Yes, as @Isaiah_40_31 says there’s been some members who have burning mouth syndrome which is a nerve issue, some have tried LDN for that so I hope it helps you 
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Thanks for the information! I actually just got a rx for LDN and have just started it. I will report back if it works!
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It has definitely been helpful for my facial neuropathy
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I am very skeptical that I ever had IJV compression. All of my symptoms got worse after surgery, I developed some new symptoms, and every professional I have seen since has told me that the scar tissue from the surgery has only further complicated my issues. The facial burning is actually one of the more minor issues. The neurological symptoms are the worst. If I could go back in time, I would not have the surgery.
@Bopper - Did you have an ultrasound of your IJVs prior to your surgery or a venogram or was your diagnosis based only on your imaging? I know this information is likely in old posts, but it’s quicker for me just to ask you than to hunt for it. 
I am truly sorry that you feel misdiagnosed & have suffered substantially more post op than prior to surgery. I can sympathize as I had a surgery in my ear that has left me w/ missing bone which has led to chronic loud tinnitus & furthered my hearing loss which it was supposed to help resolve. The surgery was not done by Dr. Hepworth.
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Dr. Hepworth concluded I had Eagle based on an ultrasound that he ordered. I am so sorry to hear about your ear surgery, tinnitus and hearing loss 
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I’ve said this many times on this forum: Doctors are in “medical practice” & that is what they are doing…“practicing”. They learn as they go, but sadly, there are mistakes made along the way & sometimes a patient’s body doesn’t respond as expected to a given surgery. That’s why we have to sign so many pages of documents before having surgery that acknowledge we know things can go wrong in a surgery & outcomes aren’t always what the surgeon or patient hope for.
It is unfortunate for those who end up worse instead of better especially if it seems there has been a misdiagnosis. As a result of that scenario, I have become a strong proponent of getting 2-3 opinions prior to having a surgery so different perspectives about the situation can be assessed & hopefully a more informed decision regarding the best course of action can be made.
I’m in that process right now as a knee MRI recently showed that I’ll probably need knee surgery, maybe as extreme as knee replacement, but I’ve learned from my past rushed decisions to have surgery, which subsequently didn’t turn out well, that it’s better to be patient & get more information before making the final treatment decision.
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Hi Hopefulhermit,
I’m in a similar boat as you waiting for a follow up from Dr. Hepworth’s office after being told to follow up for surgery by one of the NPs. But I’m not getting any responses. I’ve emailed any contact I can find and i call the office every single day at 3 separate times for the last 3 weeks with no response. Have they gotten back to you yet? FWIW, I’ve started the process of getting consults with Dr. Nakaji and Dr. Damrose as well.
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@RobotEagle -
Dr. Hepworth was in Hawaii for a couple of weeks teaching other doctors his ES & vascular surgical techniques. It may be that his office wasn’t fully staffed while he was gone. I’m not sure when he returns, but keep trying. I’ve had the best results getting responses by emailing info@denversinuscare.com. Another member who had an appt in early June told me while she was in the waiting room in his office, she never heard the phone ring once. She surmised they have it set on call forwarding all the time which is sad to hear especially since they don’t call back. I wish his office wasn’t so poorly run because he’s such a great doctor.
I think your plan to get consults from Drs. Damrose & Nakaji is good. You’re likely to get farther, faster w/ either of them.
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Yes, they did get back to me. They will get back to you also, you just have to be penitent with them.
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Thanks for this. They also eventually got back to me. I have an appointment in person with Dr. Hepworth. Since I am deciding between him and Dr. Nakaji (whose office is always responsive and helpful), I am going to ask Dr. Hepworth not only about his medical approach but about his administrative supervision. I’m sure it isn’t a reflection of his medical skills as many many members swear by their care with him, but I am afraid that should I require assistance after surgery (swelling, complications, questions, or even billing) that I won’t be able to reach anybody.
I called Dr. Hepworth’s office every day for a month. I started calling twice a day. I never once got a person to answer the phone. Someone eventually answered my initial email after 7 weeks.
I’ve spoken to Dr. Nakaji’s staff every single time I’ve called his office, and every time I had my question answered.
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It’s frustrating, & very unfortunate! I can understand that’s a concern if you needed to contact them urgently after surgery…
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Just wanted to add my own experience with Dr. Nakaji – he personally called me within a few days of receiving my application, & advocated for an earlier appointment for me given a situation I had. He then also called 3-4 business days later after the consult to see if I had any additional questions that arose after the consult, or if I needed clarification on anything we talked about. Even though I didn’t go through with selecting him for surgery, I was very impressed & have not had that experience with virtually any other physician I’ve seen, let alone a neurosurgeon.
His office can be very vague when it comes to insurance, just as a heads up incase you haven’t experienced that yet. However everyone was extremely kind & polite when I met them in person, which I appreciated!
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That’s so great to hear he was so responsive. May I ask why you did not end up selecting his practice for surgery? And who you ultimately went with? (Assuming you had surgery at all).
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Certainly! It was for three main reasons, & I ended up going with Dr. Costantino & Tobias, and just had my surgery two weeks ago.
(1) Distance, I’m only a couple of hours from NYC where AZ is across the country. The logistics & travel stresses were much easier going closer to home,
(2) Dr. Nakaji mentioned a stent as a backup plan a couple of times (I have a history of lots of scarring with procedures). Dr. Costantino & Tobias insisted on doing everything possible to avoid that possibility (including things such as posterior digastric muscle excision & overall a more involved decompression).
(3) MCAS reaction – on my trip out to see Dr. Nakaji I had a real bad MCAS reaction, which I associated with travel stress + being far from home. Didn’t want that in the midst of immediate post-op recovery
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How are you doing after surgery @dreamliner ?
@Jules Doing relatively okay, thanks for asking! Was able to get on just Tylenol after day 3, but the loss of sensation/swelling has been a bit more bothersome than I expected. Incision looking pretty good though after just two weeks! Having some SAN related pain/lack of mobility as Dr. C said they really had to work to untangle it from around the IJV. Hoping to start PT in a bit of time, but I’m getting used to using my other arm more in the meantime.
No real benefits yet (maybe a little head pressure reduction), but trying to be patient. Really am hoping the dysautonomia symptoms & fatigue can start to fade over time, however I still have a just-as-compressed L IJV, so we may need to address that. Am having a bit of fatigue/ANS surging around 6/7pm each day, so trying to work through that! But was very happy with the professionalism by Dr. C & T, I would absolutely go with them again.
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