Arrgh…I found out that Hepworth’s NP Alison had her baby 2 months early. I was due to fly out next week. Things happen. However, I have been reading the office has been having a lot of chaos over the last six months. They didn’t even phone to tell me. I called them. They want to get me in for October but that is not even guaranteed. I was due to see Centeno as well. I am trying to get into see Costatino next month but he does not take my insurance. I am in Connecticut. It seems I have not a classic ES but “venous outflow obstruction”. Annino wants to do surgery but does not have as much experience with this. I went thru the list of Drs. I noticed Dr. Hui was not mentioned in Hawaii. Is there a separate list of Drs. specifically for this? Dr. Hui seems great but that is quite the distance from Connecticut not to mention the expense and logistics. Thanks…
I’m so sorry for the situation w/ Dr. Hepworth’s ofc. We’ve had other members who’s had appts cancelled on very short notice but the fact you weren’t notified of the cancellation is a bit alarming. This whole mess is very concerning to Dr. Hepworth, but his hands are tied. An organization under which he works is in control of the hiring & firing. I’d still set up an appt w/ him even if it’s pushed out to Oct. Hiring another NP is in the works.
I think your plan to have a consult w/ Dr. Costantino is the best course of action at the moment. I recommended that another member consider signing up for WITT if your funds are short for seeing an out of network doctor as they have a great system for seeking physical & financial help from the community of people you know both well & more casually. If you have a PPO, you may have some coverage just a lower percentage w/ a higher deductible.
Dr. Hui is an interventional radiologist. He puts in stents but doesn’t do ES surgery of any kind. Stenting prior to having the bony cause of IJV compression removed is a formula for disaster as whatever is compressing the IJV is generally strong enough to crush a stent & render it useless. Once a stent is in place it cannot be removed so there’s double trouble when it, too, isn’t working.
Dr. Annino is a very skilled surgeon, but it’s right to be concerned about the outcome of surgery with him since his VES experience is limited. Perhaps talking to him about his strategy for such a surgery would be worthwhile i.e. how does he handle the situation if C-1 is more at play than the styloid? Would he look for blood flow to resume in the IJV once pressure is off of it before closing your incision, etc.
I hope Alison’s baby is ok. Two months early is concerning.
This is a very difficult situation for everyone concerned. @Isaiah_40_31 is correct, Dr Hui does not perform this surgery as an NIR. An option closer to you would be Dr Fargen at Wake Forest. Dr H taught him the procedure in person. I am sure Dr H would send the referral for you if you chose this route.
I understand both Alison is out of the hospital, baby boy was in the NICU, not sure if he is home yet. A scary moment for them, prayers are appreciated.
Thanks. Obviously, no one has a crystal ball and life happens. My problem is my anatomy (according to Dr. Annino). My styloids are in very close proximity to my C1 transverse process. He does not go all the way down to the skull base. I am also concerned as he did not want any more additional testing, such as, a dynamic venogram or looking for pressure gradients. I do not want to settle as you can imagine the risk of complications. I also don’t want to continue to be in agony. I do like the suggestion of Fargen as he is a neurosurgeon and I have a lot of chronic nerve issues including denervation that I am on IVIG for. I will move forward with a consult with Costatino and look more into Fargen. Thanks for all the words of advice…
Such a shame for you with your appts, & hope that you can get to see Dr Constantino & Dr Fargen 
Will pray 
Hi, I live in Connecticut too and also had VOO from styloid compression. I had my bilateral surgery with Dr Hackman and found direct flights to NC from Bradley. It’s an easy flight.
Dr hackman will do an amazing job for styloid resection to skull base and I’ve heard that he actually started doing c1 shaves for certain cases that styloidectomy alone does not resolve. He does not do intraoperative ballooning though so you would need a second NIR for that.
The only downside is he requires an in person appointment for your first one, but definitely something to look into if you can’t find someone else. He’s very quick relative to other surgeons too.
Wow! Thanks…
He also does both sides at same time correct? I know that seems ideal to not have to go through this surgery twice but, there are drawbacks if there are complications.
I have a lot of pain. I am not sure if there is any instability as well. I have a C1C2 rotation. I would like to see someone who has knowledge of instability. One of the reasons I was going to see Hepworth as Dr. Centeno deals with instability and referred me.
Where are you in Connecticut?
Yes he does both at the same time. If you are able to make an appointment with him then I think it’s worth it, but that’s if you can handle the trip. I’m not sure what he knows about CCI but I also keep hearing that styloidectomy should have no real effect on it. I live in Granby.
Thanks. I am not so sure about having both sides done together. Higher risks and complications. I will keep him in mind however.
@Brandy - Dr. Hackman will also do each side separately. He lets his patients make the decision whether to have bilateral surgery or not.