Ughh I feel your frustration! I can’t tell you how many times I have had to be my own advocate from so many different offices and doctors. The problem is universal. I have stood staring at fax machines in imaging centers with office staff on line myself, blah!
What I have learned…
everyone makes mistakes
breathing helps
be the pleasant squeaky wheel…and squeak as often as needed!
build bridges don’t burn them - everyone is trying to help you in some fashion even though it doesn’t feel that way some times
How maddening. I hope you get some traction today and it gets sent!! Thinking of you. I’m dealing with something similar with my angiogram. I was referred for it back in July, it is now September and I still do not have it scheduled. Every time I call the neuro vascular office I am told they will call me when it is approved. I was told by the doctor on July 27 that I t would take a month to approve and schedule. Now I just had to reschedule the follow up with Dr Hepworth for NOVEMBER. Was supposed to see him ten days after the angio. The way our medical system lags is really not helpful to people like us who are in pain and need help, and it is so so so frustrating. Especially when multiple doctors are involved. I have never had an issue calling Dr Hepworth’s nurses, they have been kind and helpful, so my advice is to just keep calling them until it is sent.
Gosh, I’m so sorry you still haven’t gotten that scheduled! I’m assuming this is an issue with your insurance? You’ve probably tried already, but if not maybe see if you can talk to someone from your insurance company and see what the hold up is?
I’ll be waiting around til 1pm anxiously hoping for a phone call from the vascular institute. After that, it’s time for some more pleasantly squeaky wheel phone calls!
(Fairly minimal) updates, friends! I will hopefully be scheduling my right styloidectomy/venoplasty with Dr. Hepworth and Dr. Annest this week. Dr. H was fingers crossed that I’d get in before the end of the year. I’m SO READY!
I do have jugular compression noted on my ultrasound report- 103 cm/s on the RH side and 101cm/s on the LH side. Dr. H noted that my jugulars are in general on the narrow side, so I’m clearly having some blood drainage issues. He also noted that he suspects I might have EDS/CCI as well and that EDS will likely just mean lots of “orthopedic unpleasantness” in my future- makes sense considering I’ve already had a knee surgery that my ortho surgeon called a “salvage procedure”.
Also, anyone who has knowledge about getting insurance to cover an out-of-network doctor because they’re the person who works with your in-network doctor, please DM me! Dr. Annest is not in-network for me, but he’s the only vascular surgeon Hepworth works with.
As far as getting insurance to help w/ an out of network doctor, Dr. Annest’s office can file an appeal w/ your insurance company & you can, too. If you have PPO insurance, you can see out of network doctors, it’s just that the deductible will be higher & the payment to the doctor will be a lower amount then if he was in network. Also, many doctor’s offices offer significant cash discounts & payment plans for people who don’t have insurance to cover their fees. You can talk to Dr. Annest’s billing dept. to find out what they offer.
I’m so glad things are moving forward for you. This has been a long slow process. Time to be done for sure!!
Wondering if you ever got in for surgery…It’s May 2021; I inquired this week and was told he’s scheduling into September.
I also have EDS.
For me, Hepworth’s office looked at old imaging, and ordered brain MRI and jugular ultrasound. He wants to clear an old infection, fix a deviated septum, possibly repair a CSF leak AND fix the jugular eagle situation. Sounds like a lot, but getting it all done at once certainly would have its advantages.
I just saw your frustration with ultrasound referral. I assume Vascular Institute of the Rockies. For what it’s worth, I’ve had a referral in a loop with them for months, which I just haven’t had the inclination to fully follow through on. Just seems stuck in that referral process.
From what I’ve read on here, Dr. Hepworth is worth the wait. Have you asked to be put on his cancellation list? This can potentially move your appointment up.
Getting your surgical needs “bundled” can be helpful but will potentially make recovery a bit slower. As long as you’re mentally prepared for that prior to surgery, it’s worthwhile pursuing. I’m sorry for all you’re going through. We’re here to support you as you wait.
He certainly sounds very through from what members have said, although that does make the waiting longer, it’s better than rushing & finding after surgery that there are other issues!
That’s also a good point, nnaeve. Being certain that you’re making the right decision will help your mindset & your recovery from a mental/emotional point of view. I will pray for you to make the wisest decision for your health and its recovery.
