Ok y’all. My consult with Dr. Hepworth is next Tuesday! I know I’ll find out the answers to all of these questions when I see him, but I’m trying to stop myself from going down the rabbit hole of anxiety with all of the things that could go wrong and figured you all could help me answer a few things!
Three big questions:
I know he has a lot of patients do an angiogram/venogram before surgery. Is this standard for ALL of his ES patients, or just the ones with primarily vascular symptoms?
If you had a CT before your initial appointment with him (particularly if it was years in the past), did he have you get it redone?
How long does he usually schedule out for surgery? Obviously I’ll wait if I have to, but I have some big life changes coming up (just graduated college, thinking about grad school vs. industry career, hoping to move out of state at some point soon, my lease is up in October) and am just getting some anxiety about all of the different ways that surgery could fit into this picture.
Obviously I know none of you can comment on my particular case, just curious if anyone’s willing to offer up their personal experience so I can at least get a rough idea of what I might be looking at here.
Hi! I just had surgery with him last week. I had a jugular ultrasound before surgery but no angio or venograms. They did a venogram after surgery while I was still knocked out to make sure the vein opened up.
I didn’t have a current head/sinus CT before seeing him so he had me do that.
I had a 6 month wait for surgery due to his schedule and the vascular surgeon’s schedule.
I have had a great experience with him. I hope your appointment goes well!
Dr. Hepworth orders imaging individual to each case, that said he works closely with vascular surgeon and neurovascular interventional radiology as well and typically always has one present for the styloidectomy.
If you have old imaging be sure to bring that disc with you. He will look at it and then decide if you need further imaging. I am one of many who has taken imaging to him that was read as normal only for him to see a defect and then order advanced imaging to clarify.
He is a very sought after surgeon world wide which means his schedule is very tight and can take a while. In my opinion he is the best and well worth the wait, 3-6 months is not uncommon.
Best of luck next week! Sending you every good for your visit.
I started seeing him in March and after trying other things for my pain (antibiotics and then he thought perhaps my salivary gland was blocked) he came to possible eagle syndrome in May I think, after my ct scan. Then I had a vascular ultrasound, eye exam to check for optic nerve swelling and now I am waiting to schedule my angiogram. In the meantime he had me try other things like wearing a neck brace. By the time that is done it’ll have been six months. Based on my experience I would be surprised if he scheduled a surgery after just one appt with him but you never know.
Also… I did not know I had vascular symptoms when I went to see him, I just had a lot of pain in my neck and shoulder. But my ultrasound showed compression and then things started to add up like my previously diagnosed “panic attacks” and “migraines.” It was something he uncovered with the testing not something I even knew I was experiencing.
Thank you all so, so much. I’m 100% willing to wait if necessary, but I’m also in this “just please get this bone out of my neck” place that I’m sure many of you are familiar with.
I do think it’s likely that I have vascular involvement, but I’m pretty sure my vagus nerve is the biggest problem.
I have already had an ES diagnosis so hopefully that makes things a little simpler! I am also extremely glad that he does the necessary testing to make sure nothing else is going on and, today being a relatively good day mindset wise, 6 months doesn’t feel THAT long compared to the 36 it’s been already.
@blossom, I’m glad Dr. H is working with you through all of this. I have anxiety/depression and I am very curious if some of those symptoms are actually ES related. It would be kind of awesome if they were. Hopefully if/when you both decide surgery is the best option, you won’t have to wait another 6 months!
@kittchenita I am really anxious and ready to get on with the angiogram and then treatment because it just feels like a cloud hanging over me so I get where you are coming from. It’s also hard having uncertainty in our lives of, is this going to happen? when is this going to happen? Will I be able to afford it? How can I plan my life around this? My partner and I wanted to take a trip to some national parks this summer but decided against because I was worried about my pain and also wanted my schedule as open as possible for doctor appointments and such. I really do trust Dr. H though and want him to have as much info as he feels he needs before cutting into my neck, so overall I’ve just been trying to accept and sit with it. No doubt it sucks though.
If you have to wait or do more testing, he will likely work with you to help ease your symptoms. His suggestions for me have been bio freeze gel, various pain pills, the neck brace (didn’t help but was worth a shot), dandelion tea and now a blood thinner that so far is helping me A LOT. I feel more ok waiting now because the blood thinner is easing my pain so much. I know you have sore throat and hoarseness so those things might not help you but I think he will have some ideas for things that could help.
He is one of the kindest, most caring doctors I have ever seen and having had some bad experiences with doctors in the past, that has been healing for me. I feel very safe and validated in his care. I don’t doubt for a second he will take your symptoms seriously and do whatever he can to help. I’ve also had a good experience with the NP who works in his office, she was very responsive to my pain and actually is the one who ordered the ct scan because I couldn’t get in with Dr. H right away and I was feeling so bad. Likely he will have you schedule a follow up in x weeks so that you can get on his schedule because it fills up pretty fast. When I first saw him for what I thought was tonsillitis he had me schedule two follow ups. At the time I thought that seemed like overkill but I was so thankful I did because I already had appointments secured when my symptoms didn’t improve!
Hang in there and let us know how it goes. I’ll be thinking about you hoping for the best outcome!
Awesome, thanks for all the info! It is so hard to balance feeling terrible all the time and wanting your life back with knowing that a thorough doctor will need to take time to choose the right treatment. It really is the “can I plan X in the next 6 months, or will it interfere with surgery/will my symptoms be too bad for it?” kind of questions that make me so anxious!
I’m one of the folks whose symptoms got a LOT better with a lidocaine injection, so I’m hoping he’ll just hook me up with those until I can have surgery. I’ve used biofreeze in the past with minimal success (probaby because most of my actual pain comes from talking) but I definitely wouldn’t mind getting some gabapentin or something on board as well. Thanks for the reminder that even if surgery isn’t going to happen right away, there’s symptom management that can happen in the meantime.
His first name is Edward and he’s in Denver, Colorado. I haven’t seen him yet, but I’ve heard wonderful things! Pretty much everyone on here who’s seen him has given glowing reviews, so I’m hopeful that he’ll be able to help me! I’m pretty lucky that I already live so close to one of the experts, but if you were to fly in it’s not a terrible drive from the airport to his office.
I’m going to continue to assert that your doctor sounds really good as well. Try not to get too overwhelmed by comparing doctors at this point. See how your first surgery goes. Dr. Coniglio really sounds experienced & like he’ll do a good job. Try to keep this process as easy for yourself as possible. Surgery & recovery are stressful. Adding in a significant traveling adventure makes those aspects even more challenging plus the additional the risk of picking up illness & infection en route in either direction.
Truth! I’ve waited a solid month for this appointment. I definitely agree that if someone we know is good is in your area, stick with them especially during these COVID times. Best not to give yourself the chance of infection flying back and forth especially right before/after surgery. I actually talked to my partner last week about us potentially staying in Denver until after I have surgery (we’d planned to move back to MN at the end of October to be closer to family) just because I don’t want the stress of either flying back and forth for appointments or finding a new doctor. Seems like a lot if its not absolutely necessary.
Which guy? I’m starting to lose it. Does anybody go to the Cleveland Clinic? I already forgot Hepworth first name. Just got call from my second opinion Referral and he doesn’t do Eagle Syndrome. They referred me to a Dr John Urban in Rochester. Googled him and he does voice surgery for professional singers. I’m at wits end.
I agree about the flying and the virus. I’m at wits end. There doesn’t seem to be an expert in Rochester NewYork. I found a Dr Burkey, who is with Cleveland Clinic in Cleveland Ohio. I googled him. Has anybody used him?
eastmas1 - I’m confused now. I thought you were scheduled for surgery w/ Dr. Coniglio who has done 100+ ES surgeries. Am I mistaken? I guess I’m wondering why you’re searching for another doctor at this time. If you aren’t comfortable w/ Dr. Coniglio, I totally understand your reason for wanting to cancel surgery & continue looking.
Dr. Burkey has done ES surgery for some of our members. Here are some links to posts where he’s mentioned:
Dang! Are you feeling any better these days? I don’t think I’d handle losing another hobby to this very well. I’ve already had to give up singing, climbing is the only thing keeping me sane right now! And I’m just now getting to check out Colorado climbing since my partner/belay buddy moved in recently!
I really hope your surgery was a success and you’ll get to do at least some more of the fun outside things soon.
