Well I called Dr Hepworth’s office today and I can confirm that he still isn’t accepting new patients at this time. I was told “maybe by the end of the year” and to keep calling periodically to see if things change.
I know he’s an incredibly busy man, so I don’t fault him since he can only see so many patients at a time.
I just don’t know the timeframe. Maybe by December or January I can get on the schedule as a new patient, but how many months out? And if I need surgery, how long after that?
It looks like I’ll be able to get a telehealth consultation with Dr Constantino on November 8th, so it looks like things are moving much faster with him.
I can still say that I’ve seen a number of benefits from the AO doctor. I’m very happy to have someone who’s actually helping.
In fact, I’ve noticed so many positive changes in my spinal alignment that I wonder if he may have eliminated the need for a C1 shave.
Additionally, to my pleasant surprise, Dr Taylor (the AO doc) has had previous patients with CSF leaks and knows who to refer me to if I need treatment.
He also referred me to a neurologist for further evaluation. The neurologist is actually a “chiropractic neurologist”, which is something I didn’t know existed. I saw him today for the first time.
He doesn’t do any chiropractic adjustments as far as I can tell. He’s gone through conventional neurological training like any other MD, but it might be more fair to call him an “alternative medicine neurologist” in that he’s working outside the constraints of conventional medicine and is able to do more cutting-edge stuff it seems like.
In any event, he’s going to do some pretty extensive lab workups and one of the tests is a Beta-2 Transferrin Test to see if the fluid dripping out of my nose is in fact cerebrospinal fluid as I suspect.
I showed him some screenshots of my recent imaging that shows jugular stenosis (many of the same ones I’ve posted on this thread). He didn’t seem overly impressed in thinking that venous outflow obstruction was the clear cause of my symptoms. But I did leave him copies of my images on discs so he can go over them in his own time.
I was overall impressed with his thoroughness and think he may be helpful in getting the workup I need.
I’ve also asked my primary doctor to refer me to a vascular clinic here in Southern Oregon, which is this one:
I’m hoping they’ll be able to follow up on the jugular stenosis and do a more comprehensive workup, possibly a dedicated MR Venogram of my neck or a catheter venogram to measure pressure gradients and the sort of workup that is really required.
You never really know until you talk to people whether or not they’re going to “get it”.
I’m sure people on this forum can relate, but one of the very frustrating things about particularly vascular Eagle Syndrome is that, not only is it rare, but it seems weirdly between specialties in ways that make it extremely difficult to find doctors who fully understand the problem.
If you’re lucky enough to find an ENT who has heard of Eagle Syndrome, or has even treated it, it’s unlikely that they’ll fully appreciate the vascular implications, given that they aren’t vascular surgeons.
On the other hand, most vascular surgeons and specialists don’t appreciate the role of external compression on the jugular veins or carotid arteries, and therefore won’t understand why a young, otherwise healthy person with no obvious risk factors would be so worried about vascular problems.
It looks like I’m finally on the verge of getting this thing figured out and definitively treated. Worst case is that I may have to wait a year or so (hopefully sooner) to see Dr Hepworth.
I will say that I feel like an AO doctor can be extremely helpful in this process, so I would really recommend it to anyone reading this who’s still struggling with this condition.
In fact, one thing I’ve noticed since I moved to Oregon is that there’s an interesting culture of “naturopathic” doctors and clinics here and some of these people seem to be very helpful in advocating for patients with rare problems that the conventional medical system is failing.
