I agree with all @Jules has said, @BirdsOfSore. Dr. Hepworth has a very specific ultrasound protocol you’ll be sent to have done after an initial consult w/ his NP Sarah Reynolds. After the US is done, you’ll have a follow-up w/ him the next day to discuss the results. Best not to try to get anything done ahead of time but to wait to see what he wants.
If you’re having trouble getting through to the office via phone, try emailing - info@denversinuscare.com
I’m glad Dr. Sale isn’t willing to do a surgery he’s not comfortable with. It’s also good to know that he’s conservative with how much styloid he removes to protect nerves even if we don’t totally see eye to eye on that. I’m sorry he’s one of the doctors who looks more specifically at styloid length rather than the overall angle of growth, curve, thickness, etc., since even a normal length styloid can cause problems if it has other physical features that are abnormal.
You’re “getting your ducks in a row” @BirdsOfSore. I’m really glad you’ve got a call w/ the neurosurgeon who can help w/ your OTC. I understand that surgery can be a somewhat slow recovery, just like ES surgeries are. I believe Dr. Hepworth is currently scheduling his ES surgeries as far out as Sept. so you may want to get the OTC taken care of first if the neurosurgeon has openings before then.
If Dr. Hepworth’s ofc doesn’t get back to you w/in a week, call or email to check in & make sure they got your forms.
I’ll be talking to Dr. Hepworth’s NP towards the middle of April. A direct appointment with Dr. Hepworth would of had me waiting until August, most likely pushing a surgery back into 2026 if needed.
I’ve talked to Dr. Pucci in Chicago about OTC and have now talked to Alison Love with Dr. Hepworth.
Last week,
Dr. Pucci agreed that I have OTC with hEDS, but at this moment he is very reluctant to do the de-tethering surgery. At this point he doesn’t feel comfortable with the odds of improvement for most patients he sees. He invited me to speak to Dr. Klinge again if it was the route I wanted to take.
Today I was blown away by NP Alison Loves professionalism. She showed more knowledge and insight in a one hour phone appointment than most specialists I’ve seen in Kansas…combined. She went in to detail looking at over five of my CT/MRIs. She said it looks like my jugular vien is indeed at about 50% stenosis between the styloid and C1 complex on my dominate side. signs of inter-cranial pressure and CSF leak at top of nasal sinus. She is sending me the information for their ultrasound and venogram protocols. She told me the ultrasound is probably adequate and the venogram is a bit invasive but maybe worth it in my case. Once I have the test I am to schedule in person meeting with Dr. Hepworth to continue the process. She seemed to think my probability for styloidectomy/decompression and csf leak surgeries was pretty high.
I am still kinda in shock about the csf leak, I’ve suspected it for a long time but was always told by doctors I was crazy. She seemed to find it pretty easy while looking at the images. It seems to be the pressure release valve for my hypertension.
I’m still processing our conversation, need to take a walk in the woods and relax.
@BirdsOfSore - We’ve repeatedly heard good things about Alison Love on our forum so I’m glad your consult w/ her went very well. CSF leaks are the “pressure release valves” for IH which many of our members w/ IJV compression have though not all of them also have a CSF leak.
I highly advise that you get your appointment w/ Dr. Hepworth on the calendar now as he is booking into late summer - July/Aug. at this point. Maybe because you’ve already had an initial consult w/ Alison, you’ll be able to get one sooner, but my experience dictates that may not be the case. I had an appt. w/ Dr. Hepworth in early April & forgot to make my follow-up on the way out of the ofc, & by the time I got ahold of someone in the office to make it, he was booked to late June. In case I haven’t mentioned this to you, I recommend emailing the ofc for your follow-up appt w/ Dr. Hepworth as calling can be an exercise in frustration. info@denversinuscare.com.