It’s been awhile since I’ve posted, mostly because I’ve just been in a holding pattern waiting for insurance to sort things out. Dr. Krempl ordered a CT angio of my neck, but my insurance has denied it, saying it is not medically necessary. That’s been very frustrating. I did finally get in to Dr. Hepworth’s office, I am so relieved. I don’t know what will come of this, but I feel more hope than I have in a long time. I will see his PA/NP (not sure which one?) on Mar 14th, then Dr. Hep himself in May. It’s funny that I have reached the point where a 3 month wait to see a specialist doesn’t seem too bad lol.
As far as the CT angio, should I continue to push with Dr. Krempl’s office to fight with the insurance company? Or should I just wait til next month when I go to Colorado, letting that office take care of it?
@Rather_b_hiking sorry to hear you had such trouble getting your CT angiogram covered! Were you ever able to get that sorted out? Insurance can be so frustrating on top of everything else we’re dealing with. Good luck with your upcoming visits to Dr. Hepworth’s office though! I’m really curious to hear how that goes for you and wishing you a positive outcome.
Your story and symptoms have many similarities to mine. You made me realize I even left out some of my many symptoms when telling my own story!
I’ve been searching around on here to try and find more info about how the process of getting into see Dr. Hep works. Your post came up and I was wondering if you might mind sharing what that process has been like for you so far if you have the energy? I know I’ve read that the process of getting in there can be a little tricky, and I’m concerned about how much travel will be involved.
I read that you needed a referral too. The doctor that noticed my styloids are elongated and has ordered my CT angio, which I’m getting on 3/20, is a chiropractor, so I’m worried that a referral from him might not be taken as seriously. My PCP doesn’t know anything about ES but is really supportive at least and will send any referrals I might need, so maybe one from him would be better. I’ve got referrals out to an ENT and otolaryngologist here in Oregon too but haven’t heard back yet and worry about the wait times, and their capabilities with vascular ES, so I’m feeling like it makes sense to get on Dr. Hep’s radar ASAP as well.
Did you have to call Dr. Hep’s office a lot after the referral was sent to get scheduled?
Good luck with your first appointment there next week! I hope you don’t mind if I follow your journey to see how your experience with him and his office goes!
@Melodious21 - thank you for your encouragement! I just happened to have finished my first appointment with Dr. Hep’s office (with his NP Allison Love) and she was absolutely amazing! for the first time I felt listened to and I actually have a little hope. She was able to get me into a CTA/ultrasound within 2 days, I am still awaiting results on that. (I have more details but will probably put all of that into another post.)
As far as getting in - I had already seen an ENT who diagnosed possible ES. This ENT was the one who sent the referral over to Dr. Hep’s office (I actually provided the fax number, which I got from calling Hep’s office). There shouldn’t be any reason why your PCP couldn’t send in the referral. Honestly, just based on my experience with Allison, I would recommend getting a referral sent and an appointment set up as quick as you can. It was about a 3 month wait for me to see Allison, and I don’t see Dr. Hep himself until May 11. So all that to say it could take a while, but I think it’s totally worth it. Their knowledge of the vascular variant of this is amazing, and I actually feel like I can relax a little because I feel like the doctor’s “got this”.
Technically it won’t hurt to go ahead and see a local ENT, but be prepared for a general lack of knowledge of the subject. There might be some gaslighting or dismissal, which can be disheartening as you know. I was lucky that my ENT was open minded and actually read the journal articles that I gave her. It sounds like your PCP is similar. Good luck and I hope the process goes smoothly! Let me know if you have any more questions.
@Rather_b_hiking I’m so glad to hear that your first appointment with Allison Love was such a positive experience for you! That must feel like such a relief to finally feel like you can trust your doctor and their team.
So far I’ve just had my PCP send Dr. Hep’s office a referral but I haven’t included any imaging with that referral, but I do have the imaging now so I just need to figure out if I should send that to them now or wait till I hear from them first. I guess I’ll give their office a call and ask how they’d like me to send it.
Thanks again for sharing your story! I’m excited for you to see Dr. Hep in May!