Does anyone know how far out Dr. Hepworth is scheduling surgeries for 2026? We had our second visit with him on Dec. 19, 2025 and he said he thought probably surgery would be in March or April. But this week I contacted the out of state coordinator since no one has contacted me. She said it may be a few weeks until the surgery coordinator gets in touch with us as they are working thru orders consecutively. Dr. Hepworth told us they see the most critical patients first and he thought our daughter was fairly critical since she is almost non-functional and nearly bed fast but now we are wondering how long she will need to wait for surgery. Should we communicate that information to the coordinator or not? Anyone have advice what we should do? Just sit back and wait?
Hi BuckeyePrincess,
I can’t say what Dr. Hepworth’s actual protocol for scheduling surgery is but I can tell you that I had to just be patient. I saw Dr. Hepworth in Person in early October. In office, her personally told me that I should hear back from the surgery schedulers within a week (and that if I didn’t hear back by then I should contact his office). As he was walking out the room, his NP turned and in a hushed aside told me that actually it would be closer to two weeks. All fine and good.
After two weeks, I had not heard anything so I reached out to his office. I was met with a somewhat rude response which said the same thing you were told, which is that they are still taking time getting through all the surgery scheduling. I don’t mind this, I just wish they hand’t told me a definitive timeline to expect the surgery to be scheduled.
Ultimately, I waited about 6-7 weeks before they called me to schedule surgery. It was November by that point. Surgery was scheduled for late April.
I am not bedridden however. I have bilateral compression, but I’m not sure I would put myself in the “critical” category. So maybe you can get your daughter in earlier? For what it’s worth, I am pursuing surgery with another surgeon and will be cancelling my surgery date in April. So maybe this speeds up the process even a little? Good luck to you and your daughter.
Dr. Hepworth is scheduling surgeries in Aug. for non-critical patients. For more complex cases, it is sooner. I know someone who has two of her children scheduled for surgery w/ Dr. Hepworth in Feb &
Stephanie (surgery schedular) is still working on solidifying a date. It’s a juggling act for them & a waiting game for the patients.
Communicating that your daughter’s case is critical & checking in every week or so to see what progress is being made toward your daughter’s surgery date is a good idea, especially since you’ll be traveling from out of state & need to make flight reservations or driving plans, & need to get a place to stay booked.
Thank you @Isaiah_40_31 and @RobotEagle for all your information!! I will keep communicating with them and hopefully we won’t need to wait for another 6-9 months! I understand how busy Dr.Hepworth is and I realize there are many who need help NOW so we do want to extend patience to their busy schedules.
My daughter is also on the blood thinner supplements that Dr.Hepworth recommended. She cannot tell much of a difference in symptoms since she started one month ago. Do we need to allow more time till symptoms alleviate a bit? He also recommended Protonix but I am slow giving her a prescription med. Any thoughts to share on this?
@Rosa you might find this information helpful and encouraging in heading toward a surgery date!
I do also want to add that working with Stephanie (Hepworth’s surgery scheduler) was a very pleasant experience. Once they reached out to schedule surgery, she made it very smooth and was kind and patient.
Thanks buckeye princess for the invite! We spoke with Dr Hepworth’s NP today and she was extremely helpful and we were very satisfied with our visit. Our daughter’s jugular completely disappeared from the scan for at least two inches on one side and was 90% compressed on the other. This would explain why she is so debilitated and miserable. At the end of the visit, the NP regretfully informed us that surgeries are currently scheduling into December. 
The wait looks very overwhelming. So maybe there’s a chance we can get in sooner?
@Rosa - Based on my experience in Dr. Hepworth’s office yesterday, he said he’s booked out to August, not December. I’d be surprised if he has no surgery dates for nearly a year.
Will you/your daughter have a follow-up appointment w/ him directly? If one isn’t scheduled, I highly recommend making one since you’ve had your appt w/ his NP so are now “eligible” to see him. You can discuss how far out he’s booked for surgery with him at that time, & not go strictly by what one of his NPs told you. Getting a telehealth appt would save you having to travel. He’s good about screen sharing & showing what he sees on scans even on a telehealth appt.
Dr. Hepworth usually Rxes a blood thinner for 6-8 weeks & suggests that symptoms relief, if it’s going to occur, is noticed about halfway through that time. I’d say if it’s not helping her at this point, it may not help going forward. It didn’t help me and actually made my symptoms worse so I quit taking it about 2 weeks in.
Did Dr. Hepworth Rx Protonix because your daughter is having symptoms of acid reflux? If so, a course of that medication could help her stomach feel more comfortable.
I requested an appointment yesterday, so Kristen is supposedly going to contact us to make one. It would really be a relief to know that we don’t have to wait till December. I don’t think I’m exaggerating to suggest that she physically may hardly be fit for surgery anymore. Her nausea has turned to occasional vomiting and weight is steadily dropping. We’re very concerned about her unaddressed Nut Cracker Syndrome. Thing is, she’s too miserable to travel to Germany, either. I laid awake for awhile last night…I give it all to God, then reach out and pull it back again.
I know He plans our lives to the exact detail, loves our daughter even more than we do and will give us grace for whatever the future holds. My head knows it, my heart is trying to realize it. Thanks for your encouragement!
I would you encourage you @Rosa to contact Kristen by email first thing Monday morning or you could send her one now so you are hopefully at the top of her list when she gets in office. It may go awhile until Kristen gets in contact with you otherwise. So keep communicating! My suggestion would be to not sit back and relax too long from what @Isaiah_40_31 was recommending. From what I have read here in the forum Dr. Hepworth will address the Nutcracker if he feels it is contributing to some of the misery. Am I right, @Isaiah_40_31 ? I stand to be corrected if I am wrong. Keep hanging on to God, @Rosa He will make a way. He still gives miracles yet today!!
Will pray an appointment comes up soon, and a surgery date…it is so very hard to leave our children in His care, even though we know He loves them even more than we do! Keep strong against the doubts and cast your burdens on Him (1 Peter 5:7)
I am sorry I was wrong about the Protonix… I should have send Pentoxifylline. Yes my daughter is on Protonix for acid reflux. So many meds with all the names I can get confused rather quickly! Thanks for your advice.. will keep that in mind!
@BuckeyePrincess - He also Rxed Pentoxyfilline to me, but it didn’t help me in any way. I know of a patient for whom it was Rxed for tinnitus (as it was for me), & it helped her tremendously. Go figure! It’s supposed to help w/ problems resulting from reduced blood flow so it could help your daughter either alone or in conjunction with the blood thinner. I had no side effects from it.
I had my 2nd appt (1st was video with PA) last week. I was told Id hear from surgery coordinator in about a month and surgery was booking out to August. Im hoping that I don’t have to wait that long and do have the ability to move quickly if there is a cancellation. I start on the blood thinners and will have a follow up video appt in about 3-4 weeks to report any improvements. My understanding was the trial of blood thinners is 4-6 weeks. If it isn’t helping after a month, I suggest letting the office know that right away. Maybe that might move this along? Ive heard some patients dont get value from them but not sure what percentage get significant improvements. That would be a good thing to ask.
Thank you, thank you, for all the very helpful replies and insights to blood thinners and the ideas you all are sharing for getting in contact with them concerning surgery/symptoms!! 
And I will be anxiously waiting with you @Snapple2020 and hoping too you do not need to wait until August for surgery! Keep us posted!
And that gives me hope we can get in for surgery yet this Spring!