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.
I had the jugular ultrasound yesterday, I wanted to post the results and see others opinions. Which side is Dr. Hepworth likely to focus on first? Thanks for the help, hope everyone is doing well.
DOPPLER VENOUS BILATERAL
Impression
Significant compression of the left internal jugular vein by a structure compatible with a
stylohyoid ligament
No evidence of significant compression of the right internal jugular vein or of the common,
internal or external carotid arteries bilaterally
Narrative
Bilateral upper extremity venous Doppler sonogram
Clinical indications:
Other specific Disorder of bone density and structure. Rule out vascular compression by
spinal hypoechoic, Eagle syndrome
TECHNIQUE:
Metastatic grayscale and ultrasound images were performed over the common, internal and
external carotid arteries and external and internal jugular veins bilaterally.
FINDINGS:
No evidence of plaque or visible stenosis in the visualized portions of the common, internal
or external carotid arteries bilaterally. No carotid artery compression is identified.
Both internal jugular veins are patent and normally compressible with no evidence of DVT..
There is moderately severe focal compression of the left internal jugular vein in the superior
neck by a structure compatible with a stylohyoid ligament. Maximum velocity in the most
compressed portion of the internal jugular vein is 173 cm/s. The left internal jugular venous
compression is visualized both in the neutral position and with the head turned to the right.
Left internal jugular venous measurements in centimeters are as follows:
Base of the neck 0.59
At cleidomastoid 0.49
Carotid bulb 0.30
At C1 or Maximum compression 0.09
Highest point 0.4
There is mild noncritical compression of the right internal jugular vein superior neck by a
structure compatible with the stylohyoid ligament
Right internal jugular vein measurements in centimeters:
Base of the neck 1.19
At cleidomastoid 0.72
Carotid bulb 0.59
At C1 or Maximum compression 0.36
Highest Point: 0.55
I’m glad you’ve had your jugular US & the report clearly shows where your IJV compression is the worst.
Your report doesn’t note whether you have a dominant internal jugular vein (which some people do but for others they’re more equal in size) so I expect Dr. Hepworth will recommend doing surgery on the left side first as it has the worst compression. If your left side was very small & less significant in blood outflow from your brain, he might opt to do the dominant side even if the compression was less as opening up the dominant IJV (when there is one) will give the best results initially. In most cases, our members w/ IJV compression have noted that both sides need to be decompressed for the best long term results, however, if the compression of your right IJV is as minimal as it sounds, you may do fine w/ just having the left side opened.
I’ve been told the right side is my dominate one, I’ve also been told it could be hard to tell with the compression which is more problematic. My left side is very much more experiencing symptoms at the moment though. It seems my appointment with Dr. Hepworth won’t come until sometime in September. Probably time to move the OTC surgery back up to the top of the list for a while.
I still don’t know when/how the two other tests will be ordered? Dr. Hepworth wants intercranial/jugular angiogram and either CT or MRI myelogram to check for the CSF leak in my sinus. I doubt my normal doctor could order those like the Ultrasound. Will Dr. Hepworth order them after the next appointment maybe?
@BirdsOfSore - Dr. Hepworth may be willing to do your left side surgery first since that side is more symptomatic. Some doctors let their patients choose but will still make a recommendation of their own based on how the various scan results look.
You have to be an aggressive self-advocate w/ Dr. Hepworth’s office. I highly recommend that you email his office to specifically ask if you should get the angio/venogram & myelogram before your next appointment w/ Dr. Hepworth. If so, push to get the referrals for those & the names & contact info of the doctors who will be doing them.
You’ll most likely get a call from the doctor’s offices to whom you’ve been referred to set up your appts. once they receive the referrals from Dr. Hepworth’s office. However, when you get the names of the doctors to whom you’re being referred, it’s a good idea to call each office to see if they have received Dr. Hepworth’s referral & ask about setting up an appointment.
If you don’t have your Sept. appt. w/ Dr. Hepworth set up yet, you need to get on that as his office staff is inconsistent about follow-up, & the longer you wait, the further out your appt. will end up being.
I like Dr. Hepworth very much, but I vehemently dislike the way his office is run.
This is most of the summary from my visit with Dr. Hepworth. I will be going to Denver in April to see him for an in person appointment.
Assessment and Plan
The following list includes any diagnoses that were discussed at your visit.
Assessment Note
Tyler’s Health Issues and Treatments
Edward and Tyler reviewed a CT scan of Tyler’s head, focusing on his vein anatomy and potential
issues. They discussed how Tyler’s left jugular vein appears smaller and more constricted than the
right, which Edward suggested could be contributing to cognitive issues and headaches. Edward also
pointed out a fluid collection in Tyler’s left nasal cavity, which he suspected could be due to a skull
fracture. They agreed to further investigate this finding.
CSF Leak and Venous Treatment
Edward explained to Tyler that his CT scan showed an old skull fracture from a 2012 concussion and
suggested the presence of a CSF leak in the roof of his nose, which could be treated as a sinus
infection for insurance purposes. Edward proposed addressing both the leak and the venous
insufficiency simultaneously to provide symptom stability, acknowledging the complexity of the issue.
Jugular Vein Stenosis Treatment Plan
Edward and Tyler discussed the results of a Doppler study showing irregular flow velocity in Tyler’s
left jugular vein, likely due to stenosis caused by the styloid and surrounding lymph nodes. Edward
suggested that Eagle syndrome surgery, specifically a styloidectomy, could help address the issue.
They also briefly touched on the possibility of checking for Lyme disease, though Tyler reported
negative tests from a few years ago. Edward proposed an action plan involving fixing the left jugular
vein through surgery and ensuring no distorted anatomy or inflammation is present.
Nasal Roof Leak Surgery Discussion
Edward explained the surgical procedure for fixing a leak in the roof of the nose, which involves
examining the bony defect and making a judgment call on whether to reconstruct the roof aggressively.
He mentioned that while some doctors may be reluctant to fix leaks that are not obviously singular
cause broken, he performs this operation 6-8 times a week with a success rate of less than 1% for
nerve injuries. Edward also discussed alternative treatments using blood thinners, diuretics, and
platelet inhibitors, but noted that these treatments can sometimes make leak symptoms worse.
Understanding Tyler’s Medical Condition
Edward discussed Tyler’s medical condition, explaining that symptoms of Eagle syndrome and CSF
leak have been present since at least 2013. He described how jugular vein compression and histamine
production can lead to various health issues over time. Edward advised against intracranial stenting
before surgery and explained that CT myelograms are not effective for detecting CSF leaks. He
suggested using MRI with prolonged T2 sequence to visualize the leak and sinus disease. Edward also
mentioned the possibility of EDS being a contributing factor to Tyler’s condition, but emphasized that
it does not condemn him to a lifetime of symptoms.
Recommendations
-CTV to assess intracranial and extracranial venous outflow and evaluate pressure gradients.
-MRI Cisternogram with <1 mm slice thickness to correlate with prior CT findings and evaluate for
possible CSF leak
-pursue sinus surgery as sinus disease was noted on all imaging + include CSF leak repair + left
jugular vein decompression
Follow-Up
Follow up via telehealth or in person with Dr. Hepworth.
Based on current findings, anticipate that surgical intervention may be recommended to address both
vascular and neurogenic components of compression.
Clinical Considerations / Impression
-Persistent left ethmoid sinus fluid pooling observed on all imaging; lack of response to antibiotics
suggests this is unlikely infectious.
-Findings suggest a transverse fracture of the posterior ethmoid roof (left)
-If the defect were to resolve with conservative or pharmacologic management, it would typically have
done so by now.
-suspect a CSF leak occurring concurrently with venous outflow obstruction.
-excess histamine contributing to the patient’s symptom cascade.
-POTS is likely secondary to impaired venous outflow due to jugular vein compression.
-history of pseudotethered spinal cord noted in consultation with Dr. Pedrefina.
***Intracranial venous stenting is not recommended at this time; venous outflow obstruction should be
addressed first.
Good that you have a plan & Dr Hepworth has some ideas for surgical treatment depending on what the further testing shows…Will you be getting the testing done locally before you see Dr Hepworth again, or are you having the testing done in Denver?
@BirdsOfSore - Thank you for sharing your full consult report from your visit w/ Dr. Hepworth. Have you decided whether to go ahead w/ surgery, or will that decision depend on what the additional scans show or initially try the more conservative approach he suggested? He did give you a lot to think about, but I’m so glad you were finally able to see him.
It’s a best practice to never leave Dr. Hepworth’s office or a telehealth visit w/o making your next appointment or setting the wheels in motion for a surgery date as it can take a frustratingly long time to get through to them & receive a response if you wait till later. You can always change an appointment date or cancel if you decide not to follow through with him.
