Hi Everybody! I’m sorry I disappeared for so long. I had a styloidectomy with Dr. Hepworth on 6/22/22. Before the surgery, I had really reached a point of being basically asymptomatic. But Dr. Hepworth believed I needed the surgery to address my occluded left jugular. Which he said was 60% blocked when he got to it, and that he had to cut away a lot of “gristle.” After the surgery, I woke up and my facial neuropathy was back with a vengeance. And my neurological symptoms (spacy, “unreal” feeling) came back shortly after. So I went back on Xarelto to control that. Two months later I started having shortness of breath, but I really don’t know if that was related to the surgery or not. In September an ultrasound showed a 100% blockage in the jugular. Dr. Hepworth wanted me to see Dr. Fargen to have a stent placed. I made the appointment, but cancelled it because my father was dying. By the time I got back to it, a follow up ultrasound showed no blockage whatsoever.
So now, two years out, the facial pain is still back, although it’s controlled fairly well with low dose naltrexone. The spacy feeling was getting pretty bad, and I didn’t like the long term Xarelto. So now I’m seeing an osteopath who seems to be effectively treating it. Hasn’t bothered me in the past couple of months, even with no blood thinner. Dr. Hepworth has had several theories on the shortness of breath, and sent me to some specialists who disagreed with him. So no real answers. It does seem to be getting a little better. After my last appointment with him, I’ve left several messages with his front desk to schedule a follow up, but nobody will return my calls. I texted him directly, also didn’t hear back. So I am about to give up on follow up with Dr. Hepworth.
I think my case is an anomaly, but honestly – if I could go back, I would not have had the surgery. It eliminated no symptoms and exacerbated several. I know I’m an exception, and that surgery has done a whole lot of people here a whole lot of good. So I am NOT saying that all of you shouldn’t have surgery. But the one piece of advise I would give is this: if you aren’t symptomatic, leave it alone. Don’t fix what ain’t broken.
This group is wonderful, and I am so thankful for all of the advice and support and help I and so many other receive here.
@Bopper - I’m really sorry to read that surgery made you worse in some ways but I WHOLE-HEARTEDLY agree w/ the “If it ain’t broke, don’t fix it!” adage as I’ve preached that on here for years most often regarding NOT having a second styloidectomy especially if the remaining styloid is not symptomatic even if it’s elongated. We have several members who are now in your boat because the just wanted to get that second spike out of their necks, but it created problems that weren’t there before.
I’m also glad you didn’t end up w/ a stent in your IJV since the reports have not shown good long-term results from those.
Regarding your breathing issue, it may be coming from vagus irritation. I had that problem prior to having my right styloid removed & though it isn’t totally gone, it’s nearly so. I’m 100% convinced it was because my styloid was irritating my vagus nerve. Since you did have IJV decompression surgery, your body has perhaps created internal scar tissue that’s now bothering your vagus nerve, or there has been some shifting of other tissues since your styloid was resected that could be doing the dirty work. Has anyone mentioned the vagus as a potential culprit? The options I listed as potential irritants for your vagus nerve could also be irritating your facial or trigeminal nerves thus causing your facial pain. If you really want to know, you could request a neurogram/FIESTA MRI scan to check those nerves out. I’m not sure how precise that type of scan is in showing what could be bothering the nerves, but I hear they do a good job at showing the nerves.
I’m so glad you’ve found a good osteopath. I’ve seen one in the past & he helped me tons, but unfortunately the cost to see him became out of reach for me so I had to stop.
Regarding Dr. Hepworth -this past month has been rough in his office. He is transitioning out from under the umbrella of Veros Health/ImmunoE & into private practice. He is spending the month of July in HI w/ Dr. Hui teaching his surgical techniques to doctors there. He’ll be back in his ofc (same location in Denver) on 8/1 w/ a partially new staff & hoping for a new & more organized office situation. Someone pointed out to me that the ofc phone number will be different going forward, but the new number Veros listed in the letter they sent out regarding the change currently has a full VM box. I’m hoping these things will all get sorted out throughout Aug. I know this has been a frustrating & exhausting transition for Dr. Hep & his staff. There is a light at the end of the tunnel though.
Thank you so much for responding! Yes, I have suspected vagus nerve irritation as well. The additional problem I didn’t mention is that my digestive problems have gotten much, much worse. Seems like it could be a form of silent reflux, and I’ve developed difficulty swallowing. That seems like it could be a vagus issue as well. If I ever get back in with Dr. H I may ask him about the Fiesta. I’m not entirely sure what can be done about vagus irritation. But I’d sure like to find something!
I received the email yesterday about Dr. H leaving Veros. I hope this transition involves replacing staff. I couldn’t believe what a mess things were over there. He would tell me tests would be ordered, they wouldn’t be, and all of my calls and messages to the office were just ignored. Plus the aforementioned inability to even schedule a follow up appointment.
I have been lucky that my osteopath is in network. But he wants me to invest in the ALF Lightwire device, which is looking to be about 7K. I’m a little hesitant about that, but multiple practictioners right now say it’s the logical next step for me. So perhaps I will need to bite the bullet.
Apparently Veros admin did the hiring & firing of Dr. Hepworth’s staff, & he had no say in it. I expect he will keep the employees who did a good job for him & let those who didn’t go & will hire replacements that he or his ofc manager chooses (if that person hasn’t been replaced).
Everyone who has seen him in the last year has experienced what you have, so take heart, @Bopper! We are all hoping things will improve & his office will become as efficient in scheduling & follow through as it should be.
I guess that is not surprising. The Veros Centennial office is by far the worst run medical office I have ever seen. I have witnessed screaming matches between the staff. I hope things improve at Sinus Solutions once he can do his own hiring. I really would like to go back. Last time I saw him he said he was worried about me. So I couldn’t believe there could be a deliberate effort to cut me loose.
Dr. Hepworth is very compassionate toward his patients especially those whose symptoms don’t resolve or get worse after surgery. As a medical advocate for one of his patients, I’ve personally witnessed the extra time & effort he puts in trying to help resolve the unresolved problems. I think giving him time to get his “new” practice set up & flowing, plus being persistent w/ calling till you get through, will make a big difference. Hopefully the calling persistence won’t continue to be necessary once his private practice is up & running. That was one of the most frustrating aspects of his practice under Veros along w/ no call backs, lack of follow through on referrals & Rxes, etc. He was aware of it all & also very frustrated.
I’m so sorry that the surgery didn’t help, and made things worse for you, and thank you for coming back to give you update- it is good for members to have a balanced view…I’m glad that your osteopath is helpful, and hope that at some point you can get back in tough with Dr Hepworth for a follow up. There are other nerve pain meds which could potentially help if you need it for your facial pain at some point, and I hope that you can get to the bottom of the vagus nerve/ shortness of breath issue
