My first appointment with Dr. Hepworth is finally here, well actually his NP but after 3 months of waiting I’m still excited. I’ll report back tomorrow and let you know what they say. Hopefully 2022 is the year I start feeling better and can get back to being myself.
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Hope it goes well for you tomorrow! 
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YES! I’m glad your wait is nearly done. Looking forward to hearing good news tomorrow!!
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Yes you can now see the light at the end of the tunnel…now if you can just get the dang surgery during all the COVID related shutdowns and surgery delays. Good luck Stuuke. 
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I had a great appointment with Allison. My symptoms were pretty strong that day so it was hard to focus and take it all in. Allison went through all of my scans with me. She pointed out some scar tissue in one of my sinuses and said they could fix that during my surgery. She also said there was a little infection in my upper sinuses. They prescribed me an antibiotic just in case that was contributing to my pressure but said that we would proceed as if I’m doing the surgery. Since we have some extra time she said we can try a couple of things first. After the antibiotic she said I can try the blood thinners. They ordered some blood work to make sure my pituitary gland was functioning correctly and everything checked out. They were very thorough. She also said she commended me for continuing to try to find answers. They’ve had some patients that don’t get out of bed for months. This the first time I’ve had anyone in the medical profession have any empathy for this condition and it meant a lot. Honestly it kind of caught me off guard. I’m going back to Denver this month for some more scans. Then I have a Telehealth appointment with the vascular team. I wasn’t able to book my appointment with Dr Hepworth until April and I can’t schedule my surgery until September. I was disappointed by the timeline but not really surprised. I’m hoping something opens up sooner. Overall I was really happy with Dr Hepworth’s team and would recommend them.
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One quality that is very rare but means more to suffering patient is “empathy”. This quality is lacking in most of the doctors lately based on experience. Even if the Doctor can’t figure out what is wrong with you, at least if they show empathy towards your situation, one will appreciate. Instead, we are made to believe that these symptoms are all in our head. Glad that you are finally seeing a great
Doctor for Vascular ES. Perhaps the long wait is indicative of how good Dr Hepworth is and it is really worthy it instead of a rushed operation without proper tests.
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Sounds like a great appointment! So glad and I hope you’re on the way to feeling better.
I agree the validation and empathy I received from Dr Hepworth’s team was unlike any doctor I’ve ever met. It meant so much to me. At one of my earlier appointments Dr H looked me in the eye and said “I believe you… something is wrong, and there’s a scientific reason for it.” They do not give up on their patients. Can’t say enough good things about them!
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Great that the appt went so well, the team sound really good…just a shame that the wait’s so long, hopefully it’ll be worth it! Are you able to go for any appts at short notice? It’s worth asking to go on a cancellation list if you can…Glad that you were properly listened to though!
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That is fantastic news, stuuke! I’m so glad you were listened to & cared about. It does make such a difference when you see a doctor who is really interested in your symptoms & willing to find the cause. Even with the wait, you’re on your way to recovery!!
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It’s crazy that such a small thing like that caught me that off guard. I’ve waited 6 months to see doctors and had them tell me they didn’t see any reason to treat me and gave me no direction for finding help. There are some good ones out there.
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I’m getting all of the scans and meeting with the vascular team this month so I can be ready to whenever Dr. Hepworth is. My family would like to be there for the surgery so summer would be best. My wife is a teacher so everyone would be free. Honestly if they told me I could go next week I’d drop everything and go.
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Random question but has anyone had it explained why this condition causes such fatigue?
Though there’s likely a technical medical reason for the fatigue, my thoughts are that your jugular compression is causing undue stress on your brain. Since it’s your CPU & is constantly active, the extra stress results in your feeling fatigued. Additional factors are the nerve & pain symptoms you’re having. When you’re constantly battling pain & unwellness, it takes an emotional toll which can cause emotional & physical fatigue. I promise that goes away once your styloid(s) are gone & the IH & nerve symptoms heal. 
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As well as all that Isaiah has mentioned, I’m sure I’ve read before that irritation to the Vagus nerve can cause fatigue…
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To add to the above:
- physically, tight muscles usually don’t have good blood circulation and cannot completely get rid of toxic waste
- mentally, sleep quality is really poor, affecting brains
- impacted blood circulation in brain prevents it from having good supply of nutrients and oxygen (our brain consumes a lot of oxygen and nutrients for its weight)
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When you have your appointment with Dr Hepworth, try and plead your case as to why it is important for you to have your surgery sooner rather than later. I had my surgery scheduled for April and after speaking with him he bumped my surgery to December which sadly was canceled due to covid, but still worth a shot to talk to him about bumping ur dates if you can.
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I’ve wondered that too as sometimes the fatigue comes on really suddenly for me after certain tasks/movements. Does that happen with you? I wondered if it was lack of oxygenated blood reaching the brain because of the back up.
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Mine is kind of long drawn out fatigue. I typically feel better when I lay down. I’m able to exercise but I never feel energized and feel like my workouts are more me pushing myself mentally and not physically.
I finally spoke to Dr. Hepworth today. I’ve commented in some other threads but I was disappointed in my first visit with him. They had lost my imaging somehow so when I flew out to Colorado we really didn’t accomplish much during my appointment. Long story short after months of emailing and calling him and trying to get some feedback on my original imaging as well as new imaging he requested we finally connected. He had some interesting things to say. First was that he felt like my styloid was fractured and reattached itself. I also have a spot in my sinuses that other doctors felt was scar tissue but he believes it might be a hole causing a CSF(I started searching old threads tonight). He definitely thinks outside the box compared to normal doctors and I’m sure that’s one of the reasons he’s popular with people suffering from ES on this board. They were originally going to clean up the scar tissue during my styloidectomy but if it is a hole they are going to fix that and I’ll have to stay overnight. He kind of went back and forth on which styloid is causing the problem which gives me some pause but I think the left is the way to go. I think he might have been reviewing my imaging for the first time during our conversation so he might have just been thinking out loud while he was looking. He also was helpful in addressing my GI concerns. He said most doctors just fail to see the connection with things outside of the GI tract and suggested learning more about Mast Cell Activation. He recommended watching this video
https://bobbyjonescsf.org/csf-video/henderson-may2020/
Dr. Hepworth is going to see if can have some test run starting with Genova Testing. He also said we might consider
- Genova testing
- Gastric emptying investigation
- Esophageal motility function testing
- 24-hr impedance pH testing
- Right upper quandrant testing.
I was really surprised when his NP called right after we finished our conversation to discuss having the tests run. She was at a conference and offered to have someone at the office start scheduling right away or she could handle it when she got back. I felt really good when I met with her 7 months ago and it’s great to have them giving my case attention again. My surgery is scheduled for early September. I’m still hoping to get it moved up since my wife is a teacher and taking time off that week for her and possibly our kids would be difficult.
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Great news that you FINALLY were able to connect w/ Dr. Hepworth! Now the ball is really rolling for you. 
I’ve had testing done through Genova. They seem to do all the “off the beaten” path types of tests that help define issues that normal blood tests can’t reach. I’ve gotten some good treatment recommendations as a result of the testing I had, but I had to go through a functional medicine doctor for that. I’m really glad to know Dr. Hep leaves no stone unturned when it comes to unusual symptoms & scan findings. Here’s hoping you’ll get some solid answers from the test results.
I assume you’ve asked to be put on a cancellation list for your surgery date. If not, please do so. Several of our members have had their surgery dates w/ him moved up over the last 6-8 months.
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