I had my first appointments with Dr. Hepworth and Allison. It’s a relief to be heard and understood. I knew I was in the right place without question.
Allison suspected vascular ES and ordered CT scans with contrast. Next, I met Dr. Hepworth, who is patient, thorough and caring. He showed me multiple locations on the scan where the Jugular is compressed on the right side, and becomes narrow like spaghetti. He explained that the pressure has created varicose veins.
His opinion is that my case is very straightforward and needs surgery. The radiology report doesn’t seem to say the same. I’m not sure why. I will share it next.
There are two other issues he uncovered, but this surgery may be enough. Please see report:
I’m glad for you that the appt went well & that you got the scans done & the report straight away…it is strange that the report mentions flattening but not stenosis of the jugular vein! They’re very long styloids though & I’m sure you’ll feel better for getting them out!
Thank you, @Jules! I am also going to post my appointment notes, below. If I could have the surgery tomorrow, it wouldn’t be soon enough. The pain is unbearable more often than not.
No one can say Dr. Hepworth isn’t thorough! It’s good for you to see the things that may be contributing to your symptoms so they can be taken care of later if styloidectomy doesn’t do the trick.
Another patient of Dr. Hepworth’s was diagnosed w/ semicircular canal dehiscence many months post op. I believe she went to UCLA Med Center for surgery to correct that. The surgery is supposed to be very effective in stopping symptoms.
A bit more complicated with the 2 other issues mentioned, impressed that Dr Hepworth has picked up the SCD too, have you googled that to compare symptoms? We have had a few members who’ve had that…
Thank you for your replies! Dr. Hepworth is extremely thorough. He spent a good deal of time with me, explaining each of his findings, with visual aides. He hopes that the styloidectomy will resolve enough of my issues. If not, I may need a spinal fusion surgery, or surgery to repair the missing bone over the ear canal tube.
Dr. Hepworth let me know that he is now a partner in my journey, and if I need further assistance with these other issues, he is not going to simply send a referral. He will be involved. I couldn’t be more pleased with his approach.
The only negative at this point is that they’ve lost their scheduler, and have no one in the hiring process to date. They are very up-front about this. They had hoped Allison could wear that hat as well, but she is understandably unable to do so. Until they have someone in position to work with insurance, I will not be placed on the schedule. Surgeries are currently booked through December. I feel I’m hanging on by a thread. I’ve taken a lot of time off work recently. I can’t keep doing that.
Thank you for your support. This forum is a Godsend.
I’m so sorry about the delay in you getting a surgery date, @EaglesWin. Dr. Hepworth has sure had troubles keeping his office staff! This is not a reflection on him, but on the changes COVID restrictions made on so many aspects of employment & life. I hope they can get a scheduler back in the office ASAP so your surgery can get on his calendar. Make sure to ask to be put on the surgery cancellation list. Sending you a hug & will pray that your symptoms become more manageable as you wait.
Pleased that Dr Hepworth is so through & helpful, but so sorry that it’s going to be a long wait for surgery…are you happy to hang on to see how you are after surgery, or is it worth looking into surgery with someone else for the SCD while you wait?
Hi @Jules! It’s probably a good idea to look into it now. I wonder if I should check with Dr. Hepworth’s recommendation for a referral, or look into UCLA, where another of our forum participants had success… or talk to my doctors at Mayo Clinic.
@EaglesWin - I think looking into the SCD treatments now would be a good idea. You never know what wait times might be to see a doctor, & if surgery is required, then there’s usually a wait for that. Even if you don’t choose to pursue it first, you’ll at least be armed w/ knowing who you’d see for your SCD care so you can move forward more quickly once you’re ready.
Hi @Violin! I don’t know her name, just that they lost who they had and it’s been several weeks. There is no one in the hiring process as of yesterday. I’m not sure what to do. My thinking is to reach out to another doctor on the list who is expert re: Vascular ES, and who would remove the styloid to the skull base. @Isaiah_40_31 and @Jules, what do you think?
I definitely thing that’s a good plan @EaglesWin. Dec is a long way off.
Dr. Cosentino in NY is doing vascular ES surgery for several members in the coming weeks. He works w/ Dr. Lo, a neurosurgeon, who shaves a little C-1 if needed to make more room for the IJV. This is a novel approach & as far as I know, they are the only pair of doctors on our list who are doing this. Dr. Hackman in NC would also be a good choice.
Hi @EaglesWin
Half of the battle is validation! I can’t tell you how many times my imaging has been read as “normal” , “Incidental finding”, or “negative” only to have Dr H point out the obvious problems. He takes the time to look and connect the dots.
I just saw him yesterday, his office is working extremely hard on a solution for the thread bare staffing issues and Dr H is visibly distressed about the situation. Hang in there, they are focusing on a long term plan very soon and will get back to you!
Thank you @JustBreathe! I’ve been reading about your experience and appreciate you and everything you’ve shared on this forum! I have faith in Dr. Hepworth and his staff. They’ve all been wonderful. I’m just having trouble waiting for possible relief. I’ve been taking more and more time off of work to just get by. I’m sure there will be a limit. But, I’m doing my best.
That explains why I didn’t get a call. I also saw them both, Hepworth himself in my second appointment a little over a week ago and he said Alison would call me to schedule in the coming days. Personally I am glad he’s booked so far out, he was talking about trying to get my surgery done in the next couple of months (I am in Denver so can slot in for a cancellation) but I need time to digest and learn so that I am completely informed when I say yes. I want to really understand potential complications and recovery times that are out of the norm (because my body does not respond normally). I’d rather understand and be prepared for a worse than normal reaction and then be pleased when it goes better. I’m really glad you’re in with him as well
@akc - Based on your symptoms, I’m very relieved to know you’ve already got your foot in the door w/ Dr. Hepworth. I’m very sorry for his office staffing woes but am glad to know he’s not at fault. Being part of a medical group has both its advantages & disadvantages & staffing issues can be the latter. I hope you get the call back ASAP & get to the top of his cancellation list quickly so you can have your surgery. Regardless of the rate you heal, getting your dominant IJV reopened & the compression cause(s) removed should make a remarkable difference in how you feel.
Thank you so much, Isaiah I more I am reading and learning the more I also believe that this really could help with at least a notable portion of my symptoms
