Ah, ok, your reasoning makes allot of sense. Dr Hepworth took 7mm off my C1 and I absolutely did go to him because I wanted a more conservative approach/ was freaked out about the idea of having C1 touched at all. From all accounts, it does seem that Constantino and the other Dr he works with are more aggressive with C1. I don’t think Constantino really respects CCI enough for people who have that issue though- I heard he recently did some presentation with another Dr about how CCI isn’t a main problem for ES patients or something, so that deterred me as I have instability. Anyway, people seem to have good results with Constantino, and I hope your daughter can get help with C1. I didn’t even know mine was still compressing my jugular in addition to the styloid, but apparently it was. It can definitely cause significant issues!
I’m very curious what the name was of the office manager that wasn’t so nice? He has a new office manager named “Jen” who’s been great with me but she’s only been working at the office for 3-4months. There were a few people in the office( 1 in particular) who I found to be difficult, but it wasn’t Jen and his other staff seemed decent in my experience anyway.
@mogulmama - I keep thinking maybe there’s a reason a place who will do your daughter’s venogram hasn’t been located. We had a member (JustBreathe) who was critically ill w/ vascular & cervical challenges similar to your daughter’s. She had a brain bleed during a catheter venogram from which she subsequently died. I think they are very dangerous for patients who are in your daughter’s condition.
@tkk - Dr. Hepworth has turned patients away, perhaps not as often as other doctors do, but it has happened. He has also co-authored at least 2 papers over the last couple of years. I’m in the process of reading the most current one right now & read a rough draft of the other one:
biomedicines-14-00689.pdf
I agree that things in his office are not run very efficiently, but apparently measures are continuing to be taken to try to improve that situation. Regarding the money issues. I asked him myself about that situation as it wasn’t the way it is now when I first began seeing him. When he went into private practice from a group practice several years ago, he began to have some financial struggles because insurance companies (especially out of state) would approve surgeries then not pay for them. The cost for his biller’s need to continuously appeal the declined payments only made the situation worse. Out of a need for a more positive cash flow system, the current requirements were put in place as well as the policy of no longer taking out of state insurance for which he’s not in network.
It’s fairly well known that Dr. Hepworth is more conservative in how much he shaves off C1 than some other doctors, but he is aggressive when he sees the need. I’m in contact with one of his patients who had surgery yesterday, & he shaved 1+ cm off her C1 transverse process.
I will pass this along. Sobering information. I appreciate it!
Sorry I haven’t replied. Massive crash/flare up/falling apart and pan the last few days. Ugh.
I do not think Hepworth’a office person that I dealt with was Jen. So she must be new. I’m glad it’s been smoother for you!
@tkk - I’m really sorry you’ve had a major flare. I hope it’s settling so you’re at least a little more comfortable. 
You’re very kind, thank you. I had a truly wonderful and amazing five days a week ago with my 22 year old twin daughters up in beautiful Santa Cruz, and I totally overdid it. Like a bazillion more spoons than I should have. I made the critical mistake of NOT taking my electric scooter and only taking my rollator because I was only going from lovely, small Burbank airport to SFO, and my daughter’s convertible (my car, actually, but I stopped driving 6 years ago!), couldn’t really fit three of us, suitcases, the scooter and the rollator. I will not make that mistake again! Phew. Then I had to continue to rally when I returned home for some big doctor’s appointments, including finally connecting with Costantino!
On Thursday, I CRASHED. My heart rate was shooting up to 130-140 when I stood up, from resting rate in the 70s. The crash coincided with my Ajovy shot weekend. I have Ajovy withdrawal after about 12-15 days that gets worse as it progresses (I do it every 21 days instead of 30), and then it takes a few days for the shot to kick in. I’ve been having daily migraines this time, a sort of “minor” Thunderclap (that’s an oxymoron), and a whopper of a migraine early today that woke me up (those are so annoying!). And my husband’s been out of town, so our poor kitties are like, “WAKE UP, woman! Feed us!”
So, I should be better soon. How are YOU? You respond to everyone’s posts and you (and Jules) are so helpful to everyone else. How are you doing these days?
I’m glad you had a break with your girls, but sorry you’re paying for it now! I hope that things settle down soon!
Have you had an appointment with Dr Costantino? If so, what was the outcome? 
PS I’m a twin, I love it, my sister & I fought a fair bit when we were young but are very close now! Do your girls get on?
@tkk -
Thanks for asking. I’m doing well. Suffering the aches & pains of getting older after having abused my body when I was younger (wannabe athlete 
) but as far as my ES stuff goes, I’m good. Still dealing with loud tinnitus in my left ear, but have a couple of leads to explore over the course of this year & may yet find a solution to help tone it down.
We moved away from CA last year after living there since 1963. Santa Cruz was 20 miles away from where we lived & was where I spent my beach time over many decades. I’m glad you got a chance to visit your daughters there, & I totally understand how easy it is to overdo in that area. My last years in CA I loved to go to the Forest of Nicene Marks (Aptos) to hike. It’s a beautiful area!
Your crash sounds perfectly AWFUL!! I’m glad you’re anticipating feeling somewhat better soon. What you said about your kitties made me laugh! I’m a cat lover who married a man who is violently allergic to cats, so I have to enjoy them at other people’s homes. 