This is why Doctors hire support staff and should have a triage system to handle patients.
Diligence shouldnt be required.
Once your foot is in the door as a patient there is a legal and ethical duty to that patient.
Not all needs are equal but they should be triaged not tossed away and ignored as unimportant.
There just aren’t enough physicians with his skillset. There are very few true venous specialists in the USA.
I second what @1speechpick says, it must be hard as a doctors to be getting so many referrals, especially patients in really grim situations and I’m sure to turn them away would be really hard, sounds like he’s spreading himself thin trying to help everyone 
The office hassle can’t have helped…
My Telehealth appointment is today. I’m hoping to get feedback on my upright MRI from early August and schedule Botox. I’ll ask about FIESTA MRI. Does anyone have any other suggestions? I’m definitely going to get at least one appointment scheduled so they can’t ignore me for 5 months.
@stuuke - I’m sorry I didn’t see your question until after office hours for Dr. Hepworth. How did your telehealth appt. go? Did you get your questions answered & get rescheduled for your next appt.? Was there any helpful info in your upright MRI? Was Dr. Hepworth able to refer you for a FIESTA MRI?
It went ok. They said they had received all of my messages so that was kind of disappointing that they just never responded.
He said that the report from the upright MRI said that there was mild impingement on my brain stem. He said some surgeons would say that’s enough to cut out part of my skull to give a little more room.
He was kind of focused on the Mast Cell Activation. He prescribed Cromolyn to see if it would help with the histamine response. He said if that didn’t work that we could try a compound version. He sent me a PDF presentation from Dr. Andrew Maxwell. The file might be too large to send through this website but I can email it if anyone is interested. He also has some videos on YouTube. I’m not sure if he has been discussed in other threads but seems to cover most of our symptoms.
If the prescriptions don’t help he said we could try a muscle block and Botox in January. I tried to get another appointment scheduled but he said it wouldn’t be a problem to schedule something next month. I kind of wish I would have forced the issue.
I mentioned the Fiesta and 3D Ciss and he didn’t seem interested. He downplayed it quite a bit and didn’t seem to think it would help.
What could be the cause of the brain stem impingement, Chiari Malformation? I hope that the meds for MCAS help…so frustrating for you 
One more thing I forgot to mention is that he recommended COQ10. He said that some of the Cholesterol medicine can remove some of the nutrients and that might have made my symptoms worse.
RED FLAG!! I just heard from someone who’s not recovering well from IJV decompression surgery that he FINALLY got through to Dr. Hepworth’s ofc & was told he couldn’t get a telehealth appt w/ Dr. Hepworth until March. I thought that was heartless in light of how desperate & urgent he communicated his need is.
I think you need to call tomorrow & get that next appt. set up in case Dr. Hepworth doesn’t know his schedule as well as he thinks he does.
I’m sorry to hear about the brain stem impingement. It looks very minimal so it’s interesting that Dr. Hepworth said some surgeons would suggest surgery to provide more space.
I hope the Cromolyn helps w/ your MCAS. I know several people who have that diagnosis & have been helped by Cromolyn.
I thought Dr. Hepworth was a proponent of the FIESTA scans. Obviously, I was mistaken.
I TOTALLY AGREE with this statement!!
He still doesn’t seem to really take my case seriously.
For that, I’m very sorry!!
No noticeable change with the Cromolyn. I’ve ordered the compound prescription from a pharmacy in Denver and hope to have it next week.
