Appointment with Dr Hepworth coming up

[jrodefeld]

I’m beyond excited for my upcoming appointment with Dr Hepworth. I’ll be flying out to Denver next Sunday and have an appointment with his assistant (I think Sarah is her name) on August 5th, followed by an appointment with Dr Hepworth himself on August 8th. The two days in between are so I can get whatever testing he needs done.

It’s been a VERY long time coming, but I feel that Dr Hepworth will be able to put all the pieces together and actually fix me. I’ll stick with him for as long as it takes, since I know from experience that almost every other doctor I see will be a waste of my time.

I’m crossing my fingers that he’s able to quickly hone in on what my most pressing issue is and schedule surgery not TOO far out. I wonder how his recent move has affected his surgery schedule? If I’m lucky, he may have more openings sooner as he’s sort of “rebooting” without Veros and the craziness of the last month or two may mean fewer people have been able to schedule procedures with him than normal. Or, equally likely, he’s more backed up and it may take even longer than normal.

To recap my situation, here’s what I know is going on:

• Severe right jugular compression to almost completely occlusion
• Positional compression of the left jugular
• Deviated septum, chronic sinusitis

This is what I suspect is going on:

• CSF leak(s) in my sinus/skull base area and in my spine
• Possible jugular compression lower in my neck, and possible brachiocephalic and/or subclavian vein compression (I have a history of thoracic outlet syndrome)
• Tethered cord syndrome with possible associated chiari or “brain sag”
• Possible other vascular compressions? (MALS, nutcracker, MTS)
• Slipped rib syndrome

I don’t believe I have EDS or craniocervical instability.

Luckily, I was able to speak with Dr Hui on two occasions through Telehealth and he was able to get me a cerebral venography with Dr McDougall and based on the results, and my previous imaging, he believes I should get a decompression surgery. The fact that he’s done a lot of the preliminary evaluation may speed up the process with Dr Hepworth.

I’m honestly not completely sure how I’m alive at this point. It’s hard to be this completely disabled and know that there probably isn’t a doctor in my entire state (Oregon) who understands any one of these issues.

So I feel very fortunate to be seeing the best person I can see and I’m committed to sticking with him until I get better. If I do see other specialists (such as evaluation for tethered cord syndrome), I’ll have Dr Hepworth coordinate their care so I know it’s fitting into the bigger picture.

I also have a telehealth consultation with Dr Ian Carroll from Stanford in early September for consideration of possible spinal CSF leaks. And I’ll be speaking with Dr Joseph Forrester, also at Stanford, in late August to see if he can confirm whether or not Slipped Rib Syndrome is something I genuinely have as well.

These are probably the best people I could be seeing in their respective fields so I’m beyond excited to finally be dealing with people who I can confidently trust.

I’ll update this thread and let everyone know how my trip goes as it’s happening.

Does anyone know how much time Dr Hepworth spends with patients during their first visit?

[Isaiah_40_31]

Dr. Hepworth’s “move” isn’t a physical move. He’s only moving his practice out from under Veros Health. His office will remain at the same location 3150 East Third Ave, Ste. 300, Denver. I recall Dr. Hepworth gives 30-35 min for a first appointment, but it might be more. I saw him in Feb. & don’t remember for sure, but I didn’t feel like he rushed in & out of the room.

The parking lot for the building he’s in is tiny so there usually isn’t a spot in it, but there is plenty of metered street parking close by. You’d be wise to get the PayByPhone app on your phone before you go for your appt. That’s the app the parking meters use for you to pay. I had to figure all that out on the fly when I didn’t get a spot in the parking lot & was rushing to get in for my appt.

I’m glad you’ll be seeing him fairly soon & especially that it will be in his new practice situation. I hope your appt. goes as well as you anticipate & that Dr. Hepworth is able to lay out a care plan for you so all your health needs are taken dealt with.

[Jules]

Best wishes for your trip and your appointment! So pleased that things are moving forward for you & that you have identified experts to consult with, hope that it all falls into place now

[jrodefeld]

Thanks, I’m really looking forward to it! I understand Dr Hepworth is not physically moving, just disassociating himself from Veros. It’s a metaphorical move.

BTW, I received a call from Veros yesterday, telling me they had to cancel my appointment with Sarah since “she’s no longer working at Veros” but I could keep my appointment with Dr Hepworth on the 8th.

It seems that a few people have gotten a similar call in the Facebook group.

Should I just ignore these phone calls from Veros? I assume there’s a lot of confusion and miscommunication during this transition period.

I’m nearly positive I need to speak to Sarah first, or whoever is serving the role as NP, before seeing Dr Hepworth. I know Dr Hepworth typically orders some testing that isn’t standard, including a specific ultrasound protocol and CTA/CTV that is likely different from the imaging I’ve already had.

I don’t think it would make sense to see Dr Hepworth without having gotten this testing done.

I guess I can call Dr Hepworth’s new number when it becomes active this Thursday, but that leaves only Thursday and Friday to get a hold of someone to confirm.

I have plane tickets for Sunday, August 4th in anticipation of a visit with Sarah on the 5th.

[Isaiah_40_31]

@jrodefeld - Veros is doing their best to sabotage Dr. Hepworth’s practice thus the call cancelling your appt. w/ NP Sarah Reynolds. You will need to call Dr. Hepworth’s ofc (try doing that tomorrow, Wed., 7/31) to let the staff know that your appt. w/ Sarah for 8/5 was cancelled by Veros & that you need it to be reinstated. We believe Veros fired all of the staff that served Dr. Hepworth & left him w/ no office staff for the last week & a half of his time w/ them, so he’s been scrambling to get help so he can see his patients in an orderly fashion. It’s been nightmarish for him.

[jrodefeld]

I tried calling yesterday, but the new number hadn’t gone “live” yet. I called today and left a message but wasn’t able to speak to an actual person.

If I can’t get a hold of someone either today or tomorrow, I’m not sure what to do?

It may be that, from Dr Hepworth’s perspective, my appointments are still on as scheduled and Veros is just confused.

I’m scheduled to fly out on Sunday and I’d certainly like verification of the appointment times.

Do you know if Sarah Reynolds is staying on with Dr Hepworth after his split with Veros?

[Isaiah_40_31]

I believe Sarah R is staying w/ Dr. Hepworth in his new practice. I’d say keep calling until you get a live person on the line, even if you have to call many times today. It’s important that your appointment goes as planned & that Veros hasn’t messed things up by maliciously cancelling something they should have left alone.

[jrodefeld]

I’m in Denver and things have gone surprisingly well!

I had a lot of anxiety about the status of my appointments since I wasn’t able to get the full answer on Thursday or Friday of last week. So I decided to go in to Dr Hepworth’s office early today to deliver medical records and get first hand confirmation about what’s going on.

The nice lady at the front desk told me to wait while she took my medical records and got confirmation from Dr Hepworth. Then she came out and said I could see both Sarah and Dr Hepworth right now! It’s clear that they are all scrambling to get everything in order in their transition away from Veros and are more flexible in how they’re accommodating everyone.

Everyone there is incredibly nice and Sarah is amazing. I’ve never dealt with a PA who is as knowledgeable and caring as she is. She went over my medical history and she emphasized that they won’t turn people away if they still have issues following surgery. Dr Hepworth can personally treat everything involving the head and neck, but he’s able to evaluate your entire body and refer you to the appropriate people if there’s something he doesn’t do.

I handed two discs with many different scans I’ve had over the past several years and he downloaded them all to his system. I have CTs, MRIs of the brain and entire spine, CTA of the chest and legs, cerebral venography and more.

I was told that Dr Hepworth can take one look at a scan and see everything there is to see and they weren’t joking. He immediately identified that my right jugular was basically non-existant on my CT and my left looked partially compressed by my styloid. Additionally, he identified my deviated septum and possible sinus infection. I mentioned that I was concerned about a possible CSF leak but that it hadn’t been confirmed yet.

So he loaded up my brain MRI and, literally within 10 seconds, told me I have a CSF leak in my spine! Apparently there is something called a BERN score that is based on the distance between various structures in your brain that can predict the likelihood of you having a CSF leak.

0-2 means you are unlikely to have a leak. 3-5 there is a moderate chance. 6-9, there is a high likelihood of a leak. My BERN score is 8.

Based on current imaging, they are very confident I need decompression surgery, but they ordered their jugular ultrasound protocol at Health Images to get more information to identify all the areas of compression. I’m going to get that done tomorrow, then see Dr Hepworth again on Wednesday to go over my imaging in greater detail.

I feel so incredibly happy to be a patient of Dr Hepworths. I’ve seen a lot of doctors and I can say with confidence that Dr Hepworth is the most impressive doctor I’ve personally spoken to, and his entire staff are amazing.

I have complete confidence in him and am excited to start treating these problems and getting better!

I’ll post more updates after I get my jugular ultrasound and speak with Hepworth again on Wednesday.

[Isaiah_40_31]

I was praying that your appointment would go as planned & it turned out even better than you hoped! That’s AMAZING & an answer to my prayer for you! I’m so glad you had a good experience w/ Dr. Hepworth & that he was able to clarify so many of your suspicions, @jrodefeld! I hope that once he has the US results in hand, you can get your surgery scheduled quickly.

[Jules]

I’m so glad that you had such good appointments, and that Dr Hepworth has been able to see what the issues are straight away! As @Isaiah_40_31 says, that has been a good answer to prayer

[jrodefeld]

Thank you, I really appreciate the kind words.

Here are the notes from my appointment with Dr Hepworth I had a few days after my last update:

The jugular ultrasound revealed problems with both jugulars, but Dr Hepworth feels that the issues with the left jugular may be partly due to compensation for the severe stenosis affecting the right jugular.

Additionally, based on my CT scan he feels there is a greater than 50/50 chance I have a CSF leak in my ethmoid sinus.

So, problems with both jugulars, a likely CSF leak in my ethmoid sinus, and almost certain spinal CSF leak(s) as well.

So he recommended a right-sided jugular decompression surgery, as well as an “ethmoidectomy” in which he’ll look for CSF leak(s) and repair any he finds.

I was complaining about abdominal symptoms and he looked at my chest CTA and thought a few things looked suspicious for possible additional compressions. It wasn’t dramatic but he is planning on doing catheter venograms of the renal and femoral veins to see if there are any additional compression problems during my surgery.

Overall, very happy with the plan and am hoping I can make it until surgery.

It looks like I have to wait at least until the first week of September to schedule surgery and then not sure how long after that before the actual surgery date. Someone at the front desk mentioned December as a possible timeframe, but then I spoke to Stephanie who suggested it might be sooner.

In the meantime, Dr Hepworth prescribed Brilinta and I’m hoping it’ll make a huge difference.

Dr Hepworth told me there is an 80% chance I’ll only need the right side done but I could schedule the left side to hold a date in case I feel that I need the other side done following the first surgery. I’m planning to do that.

[Isaiah_40_31]

Good idea to schedule that second surgery when you schedule the first one as many of our members have found they didn’t get optimal symptoms relief until both IJVs were decompressed. Since you have comorbidities, it may take a third surgery to deal with those so you can get to really feeling better, but I expect you already know this. I do expect the IJV decompression surgery(ies) & possible CSF leak fix will be a big jump in a healing direction & will help you get back on your feet.

[Jules]

Hope the medication helps you manage until surgery, & that it’s not as long to wait as you think

[jrodefeld]

Does anyone know why Dr Hepworth is currently recommending Brilinta for his patients, with Plavix being a secondary option rather than the other way around?

I’m having some trouble getting Brilinta for a reasonable price. Walgreens is quoting me a price of nearly $400 per month for Brilinta and I can’t find any coupons or discounts to get it any cheaper. Even generic isn’t much of a price savings.

Dr Hepworth mentioned that I could order it from a Canadian pharmacy if my insurance wouldn’t cover it for a reasonable price. He said I shouldn’t pay more than $80 per month or so.

Now, I checked the prices for Plavix and that drug is so much cheaper than Brilinta.

Here’s the cost of Brilinta on GoodRx:

And here’s Plavix:

I want to take the drug Dr Hepworth recommends, but if these two drugs work more or less the same, it would be so much easier and cheaper to try Plavix.

Any ideas why Brilinta may be better and more effective than Plavix?

[Isaiah_40_31]

Brilinta is a newer medication & there isn’t a generic version yet, this the high price. He put me on it & I pd the $400 for 1 month not knowing abt the Canadian pharmacy but had to quit it after 3 weeks because it made my symptoms worse (mine is a somewhat rare situation) & caused some spontaneous bruising.

Plavix works differently than Brilinta & Dr. Hepworth feels it’s more effective so if you want to take it, ordering from Canada would be your best bet for more reasonable pricing.

[ButterflyWishes]

Check out Brilinta savings card. I hope you can get it.

ARE YOU ELIGIBLE TO USE THE BRILINTA SAVINGS CARD?

• You have commercial insurance, which is often referred to as “private insurance” and is typically provided by an employer
• You are 18 years of age or older
• You live in the United States or its territories

Some Medicare Part D plans are also covered.

https://www.brilinta.com/brilinta-coupon-savings/savings-support.html

[Isaiah_40_31]

Thank you for sharing this information, @ButterflyWishes! Very helpful!

[ButterflyWishes]

My pleasure, @Isaiah_40_31 !

[IJVHelp]

I wonder if this is new policy regarding holding the second surgery date. His staff would not allow that when I requested to get both surgeries scheduled. They said it would take away from someone who needed that surgery slot so they cannot do “place holders.” I ended waiting almost 11 months in between surgeries since I needed to recover from my first decompression, get a follow up, and finally schedule the second surgery which is now October 30th. This definitely was a long wait, and it made me feel unheard and frustrated given I still have symptoms. I hope everything works out for you and it looks like they are giving patients more flexibility.

[Isaiah_40_31]

@IJVHelp - I wonder if it depends on who you talk to in Dr. Hepworth’s ofc as I had a friend who had her surgery last year in May & was able to have her second surgery in Sept. as they allowed her to book it at her post op from the first surgery. I also know of others who have been able to book their second surgeries well ahead. It doesn’t make sense that someone would tell you that you might take a spot someone else needs when you need it too! If that ever happens again, question it!