My name is Julie & I’m newer to the group…
I was dx w/ ES abt 8 weeks ago (MRI w/without contrast) revealed the following:
approximately greater than 75% stenosis left
& 50% narrowing of the right jugular vein at the C1 level.
(There is flow in the jugular vein below this level).
I’ve had symptoms for more than a decade but was disregarded & dismissed by numerous clinicians as many of us are… finally had the right duo of pain management doc & a Neuroradiologist dx me.
I live in Denver & was referred to Hepworth…however as many of you have noted- his staff isn’t very responsive.
I’ve called 6 times & my referring doc has faxed referral over several times….I can’t get anyone to call me back to even schedule a consult!
My Diagnosing doc stated case is somewhat severe considering the level of stenosis- but idk??
Wondered if there were any suggestions on how to get a consult w/ him?
Also curious if others had the similar levels of stenosis in jugular?
Thanks in advance- appreciate everyone in this community- it’s nice to know while we maybe on an island, at least on it all together.
Glad you were able to get into Hepworth.
My name is Julie & I’m newer to the group…
I was dx w/ ES abt 8 weeks ago (MRI w/without contrast) revealed the following:
approximately greater than 75% stenosis left
& 50% narrowing of the right jugular vein at the C1 level.
(There is flow in the jugular vein below this level).
I’ve had symptoms for more than a decade but was disregarded & dismissed by numerous clinicians as many of us are… finally had the right duo of pain management doc & a Neuroradiologist dx me.
I live in Denver & was referred to Hepworth…however as many of you have noted- his staff isn’t very responsive.
I’ve called 6 times & my referring doc has faxed referral over several times….I can’t get anyone to call me back to even schedule a consult!
My Diagnosing doc stated case is somewhat severe considering the level of stenosis- but idk??
Wondered if there were any suggestions on how to get a consult w/ him?
Also curious if others had the similar levels of stenosis in jugular?
Thanks in advance- appreciate everyone in this community- it’s nice to know while we maybe on an island, at least on it all together.
Glad you’re able to get into Hepworth- any recommendations on how to get them to engage?
I’m very sorry to say that Dr. Hepworth is currently not taking new patients because of the staffing issues in his office (he’s under the umbrella of a medical corporation that handles that so he’s got no voice in the matter). If you do get through or get a call back, the best you’ll be able to do for the moment is get your name on a list to be contacted when things open back up, but this has happened before w/ his ofc, & even with being on the list, it will fall to you to follow through.
Since your C-1 is involved in your IJV compression, you might do well to see a doctor who does C-1 shaving to make more room for the IJV. Dr. Costantino in NY does styloidectomies but works together w/ Dr. Lo who does C-1 shaving. Having a consult w/ either doctor would be worthwhile just to get the ball rolling for you. They’re both on our Doctors List.
Yes I know it’s really hard to get through to them. It was actually over a year from the MRI results to when I finally got in. Apparently the referral kept not getting through and they wouldn’t see me without.
They are also short staffed at the moment and according to the latest on the jugular venous outflow facebook group he’s not taking new patients at the moment (he’ll do that; take new ones in until he’s at capacity and then put a hold until there’s space again).
I found that the number that I eventually got called back on was different to the one my neurologist had and someone almost always answers that apart from lunch break (she’s the one front desk person though so, patience if if takes a few calls getting through). That number is: 303 224 4711. If you get to voicemail, i advise just hanging up and trying again later.
Ps. I wouldn’t worry about it taking a little longer, if it’s been 10 years… (I know, nuts how long we have symptoms prior to this dx isn’t it) then your brain hopefully won’t explode if it’s a little longer. I have the right side that is teenie weenie, with most of the blood being pushed to the left side, and on the left side at C1 my MRI showed 90% compression (the CTV that Hepworth then ordered showed it at 60%, but I’ve learned that may be due to the difference when they shot the contrast in there??? so confusing…).
Meantime, there is SO much to learn!!! And I am right alongside you. Glad you found this group. I ended up having a really bad period almost right after being let in and am just now coming back (but prepping for a new Dr apt - so putting my limited resources in there). That said, I was so happy to find this and look forward to spending more time in it too.
I would think that my IJVs were blocked to similar levels, although I didn’t have C1 involvement. It’s so frustrating especially if you’re fairly close to Dr Hepworth to not be able to get in, I hope that you hear something soon & don’t have to travel elsewhere!
Just a question. Has anyone who has gone to see Dr Hepworth first had to go through a girl called Sarah? They have given me an appointment with her for the end of November to start looking at my case, but I don’t know if this is their way of working.
They usually schedular an appt with the nurse practitioner first, so I would presume that’s who you have your appt with. (if I remember right his previous NP is on maternity leave, unless I’m confusing the offices with Dr Constantino!)
@Jules is correct. Dr. Hepworth’s office protocol is that the first appointment must be in person with his NP who will look at your scans & results & do an initial consult. Dr. Hepworth will follow up w/in a couple of weeks w/ a telehealth (video) consult & from there surgery is either scheduled or further testing is recommended & referrals are made.
From what I’ve heard, he has two NPs working for him now & Sarah is one of them. I’m really glad you’ve gotten an appt. Many of our members have been told he’s not taking new patients & need to call back in Dec. to see if he’s taking new patients then.
Great!!! I was having doubts about this trip to Denver so I really appreciate your comment. I was in Mexico City where I met a doctor who knows a lot about eagle and does the surgery but does not do decompression. In any case, it seemed like an excellent option to me because it seems that he knows well what he does. He has operated several.
If anyone needs the data, don’t hesitate to ask me. He seemed like a very good surgeon for classic eagle syndrome.
If you don’t mind sharing the doctor’s name & contact info (if you have it), I’d gladly add him to our Doctors List as a resource who knows about ES in Mexico, if nothing else.
