Dr. Hepworth Patients: Share your experiences?

General
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Hi kittchenita,

Like others have mentioned, Dr. Hepworth’s course of action is pretty individualized. However, I found with me he went through a sort of process of elimination that I’m not sure helps with your specific concerns…

When I first started seeing him two years ago, Eagles wasn’t even on the table. He diagnosed me with a CSF leak in my sinuses after my initial CT - causing a swing between intracranial hypertension and hypotension. He did order a new CT even though I had had a CT done just two years before before I had a sinus surgery (through another ENT). And, I’m glad he did! He ordered highly specific imaging that apparently aren’t standard (which is good!).

Anyway, Dr. H’s theory was that my CSF leak via fractured sphenoid was caused by Idiopathic Intracranial Hypertension (IIH). THEN he referred me to Dr. Kaminsky (interventional radiologist) and through a MRV found a transverse sinus stenosis. So, I had two stents placed 12/2018.

After the stent, he recommended closing the CSF leak, since he thought we fixed the IIH problem, though the pressure in my head never completely improved. So, at this point, I had just gotten a new job and had given up on the dream of solving the head fullness issue that I had described to doctors for YEARS. Due to the new job, I cancelled my scheduled surgery to repair the leak and never followed up. I also have hemiplegic migraines and that takes up a lot of time between treatments for that.

SO, I had a follow up scan to check on the stents through Dr. Kaminsky’s office and he mentioned concern for bilateral jugular vein compression…which would totally explain this full head feeling. After an ultrasound, compression was confirmed on both sides with complete occlusion of my left jugular.

I met with Dr. H last week and we immediately discussed the need to schedule a styloidectomy, though I don’t know why he’s doing it on the right side as opposed to the left, which is where there’s concern for nerve compression. He mentioned the possibility of needing to do the other side as well at a later point in addition to more stents.

Not sure if this helped at all in your info gathering about Dr. H’s process. While I wish we could have found the Eagle’s two years ago, I’m glad he’s a true solution-based doctor and am hoping to see some resolution soon!

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22

…also - I had both an angiogram and venogram two years ago (but am told they didn’t measure jugular flow?)

I’ll also have a venogram after my procedure, like you.

And, for scheduling - since Dr. H and Dr. Kaminsky are going to be present, just waiting for their offices to coordinate. I was told Dr. H was scheduling out for October though if that helps.

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Thanks so much for your input! I’m glad I’ve already had an Eagles diagnosis and I know that’s what I need to ask about. I kind of would like to get another CT done just to see what’s changed in the last 2 years if anything. Good to know he’s scheduling out that far- my lease is up at the end of October and I do need to sort of plan around that.

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I mean Dr Hepworth; the discussion’s about him.
I’m trying to remember who you’ve seen, but can’t keep track, sorry! As Isaiah says, I thought you’d found a doctor you were confident with & were wanting to have surgery quickly. If you’ve already seen him, sorry, but Dr Mark deLacure has done several surgeries recently. Otherwise if you’re looking to travel, Dr Cognetti in PA is very experienced.
We do have several doctors listed at Cleveland Clinic, Isaiah’s posted the link to out list.

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Such a long journey for you! I hope that you’re able to get surgery soon & that solves your head pressure…

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I had pre op with DDoctor. I was under impression and thought he said he did operation 125 times, it’s only 5. After Pre op we opted not to schedule the surgery until we get second opinion. Just didn’t feel comfortable. I’m sure he would have been fine, just need another opinion.

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Thank you for the clarification, eastmas1. Dr. Delacure (NYC) & Dr. Cognetti (Philadelphia) are almost equal distances from Rochester. Either one would be good for a second opinion. Dr. Cognetti does phone consults which would save you a trip. I’m not sure whether or not Dr. deLacure does.

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Siel4112 ~

Welcome to our forum. What a journey you’ve already had! I’m so glad you’re diagnosed & well on your way to taking the steps that will help with recovery for you.

I hope the two doctors get their schedules together ASAP & get you scheduled.

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I’m in the process of going to see Dr Brian Burkey at the Cleveland Clinic in Cleveland, Ohio. He was recommended by ENT Dr in Rochester NY. Seems like nobody here does it much.

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Update from visit with NP Allison today (she was wonderful): Jugular compressed bilaterally. Collateral drainage is visible on CT scan. Referred for jugular ultrasound to determine extent of vascular involvement.

She also scoped me, and found that my right vocal cord is not closing properly (likely due to atrophy from nerve impingement in neck). She says it’s still vibrating, but the bulk of the vocal cord isn’t strong enough to bring it all the way medial to make contact with other vocal cord. Good news is that the fact that it’s not 100% paralyzed means that the nerves are more likely to regenerate fully after surgery. That definitely made me cry because every other time I’ve been scoped (latest was 2 years ago) I’ve been told that my vocal cords looked great and therefore the issues must be psychological. It was good to have confirmation that I’m not crazy that there’s something wrong.

Slightly off topic: Allison said that there’s some sort of artifact on my CT that was a little concerning- essentially she said it looked like my aorta/structures coming up off of it were metallic. She asked if I’d ever had any sort of heart/chest surgery, which I have not. She’s going to contact the place I had the CT done and see if she can get the report, but does anyone else know anything about this? Very strange indeed.

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That sounds like a really productive and thorough visit. So glad you got in to see her!! It did not take me long at all to schedule my vascular ultrasound so hopefully you can have that done before you see Dr. H. Also your poor vocal chords and poor you. I’m SO glad that you are in better hands now.

That is strange about the ct scan but also sounds like Dr. H’s office to be extra thorough even when it’s not their speciality. I went in this summer with a wasp sting that swelled my entire foot and he even treated me for that. Hopefully it is nothing and she can get more clarity from the report.

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Good that she was so thorough, & that you have confirmation at last of what’s causing your symptoms…I hope that you hear soon about the artifact, & hope that it is just that. I would hope that if it was anything else that would’ve been commented on?

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HOORAY for answers!! It makes all the difference to find a competent & thorough doctor & PA!

Interesting about the artifact. Strange but insignificant things can show up on scans. Let’s hope this is just an anomaly of the scan & nothing going on inside of you. I’m also glad the NP is being thorough.

I hope you can get that ultrasound & whatever else you need ASAP.

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Thanks everyone! I feel so relieved that I have some confirmation that what I’m going through is real and at least potentially fixable. She did discuss that nerves can take up to two years to regenerate as much as they will, so I know I have a long road ahead of me. We also discussed that if surgery does not fix the problem, I can eventually have a medialization procedure done to permanently fix my right cord medially so that the left at least has something to make contact with. That’s definitely a worst case scenario kind of thing, but good to know that it’s available.

NP did not seem concerned about the CT artifact thing, just seemed like she wanted to know what it was so that she could confirm that it wasn’t an issue. I’m not planning to worry about it until I hear otherwise from her, but I’d love to hear if anyone else has had anything of the sort come up!

So glad to be moving forward again. Hopefully vascular ultrasound place will call me soon- I’m feeling a little impatient! But mostly, today, just relieved to have some answers.

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@kittchenita do not be afraid to call the vascular ultrasound place. They took a while for me so I called and turns out they did have my referral and I scheduled it quickly. I had to call the vascular surgeon’s office when my referral was sent as well, to get the ball rolling. They can take a while… don’t worry about “bothering” them, you aren’t!

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Thanks for that info! I tried calling them Monday and was placed on such a long hold that I was pretty sure they forgot about me and hung up. Just tried again now and got a voicemail. So it looks like getting a hold of them will be interesting, but I’ll keep trying.

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Sorry for your frustration, definitely keep calling until you get someone to answer and then be a pleasant squeaky wheel :wink:

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New updates because I’m frustrated: Turns out Dr. H’s office forgot to send my ultrasound referral last Friday (finally got through to the ultrasound place today, and they didn’t have it). Called the doctors office back today and they said they were sending it while I was on the phone with them and to call the ultrasound place back in an hour because they were sure to receive it by then. They did not.

I’m calling the office on Monday and asking them to give me a paper copy of the referral so I can drive it over there myself. Would take less time, honestly.

Thankfully, the woman on the phone at the ultrasound place said they would definitely be able to get me in before my appointment on the 29th. Just irritating to feel like I’m again having to hold peoples’ hands through the logistics of this.

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kittchenita ~ How frustrating for you!! I have a “love to hate” relationship w/ modern technology sometimes. Though it makes our lives easier in many ways, it can also cost extra time & energy when it’s very inopportune. I think your plan is good & necessary at this point. I hope your ultrasound appt gets scheduled as soon as your referral lands in the hands of someone at the front desk at the ultrasound place.

I hope you can enjoy the weekend so you’re able to deal w/ this in a relaxed fashion on Mon.

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That’s so annoying, but good you’re on the ball, & chasing it up, keep up the good work & hope it gets sorted soon!