I’ve asked about the waiting list every time I talk to them and called several times 
He told me I’m on the priority waiting list but I don’t know if that means anything. I’m sure they have others on the list but I’m kind of surprised I’ve been on the list over 7 months with no luck. Physically I can wait until September but logistically it would be a lot easier to have someone out there with me in the summer. They want me to stay out there a week.
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Great that you had a more positive visit, & that Dr Hepworth was thorough…I hope that the new testing can give you some answers to your GI issues. Good that he spotted a potential CSF leak too…I hope that you can get in for surgery earlier 
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Stuuke,
Im so glad you finally got to see Hepworth. It has been a long road and many months to get there. Sorry for the hiccups with the imaging. Good thing he picked up the possible CSF leak! he seems very thorough. Sept will creep up on you quickly.
This is great video! My EDS hand surgeon in Seattle recommended Dr. Henderson for CCI consult, one of the only 2 he recommended in the country. The video is very helpful to where I am at right now re: vascular compression. His thoughts on botox are enlightening re:migraines.
Im curious about the Genova testing and what they are specifically testing and your results? I have had much of the other testing. My daughter has had many too and has signs and symptoms of mast cell along with POTS and EDS. She was recently diagnosed with SIBO and just finished 2 week round of antibiotics. She has had some improvement with GI issues (about 50%) and the naturopath who is working with GI doc is recommending another round of the antibiotics. IM starting to go thru more GI workups myself as Ive had long term gastritis/IBS Thats why your genova testing is of interest.
I hope you get an earlier surgery!!!
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I’ll let you know how the GI testing goes. This might be TMI but the last time I had extended digestion issues they seemed to clear up after my colonoscopy. I’m not sure if the prep cleaned out my system to the point it reset or what but I started putting on weight and didn’t have as many issues with food or throat tightness. My primary care doctor dismissed it as an infection my body just figured out how to fight. My current period of issues has been going on a little over a year. Eliminating nuts seemed to help. I had already eliminated dairy and most gluten.
I had gut issues for a long time (most likely different from yours) & finally saw a dietician who had me start a paleogenic diet. Eliminating grains, legumes & dairy for only two weeks transformed my digestion. I was amazed. I was allowed to slowly add those 3 food groups back into my diet to determine which one(s) caused my problems, but I felt so good w/o them, I didn’t add them back. That was 10 years ago. I’m now sort of following a ketogenic plan but still am about 99% grain & legume free & mostly dairy-free except for cheese. This is not to preach a specific diet but to say that you’re on the right track at least thinking about how diet might be affecting your digestion.
My gastroenterologist once told me that having a colonoscopy clears the gut bacteria out & lets the intestinal tract start over. I puzzled over that a bit because it didn’t seem like totally accurate information i.e. I can’t imagine all gut bacteria exits w/ “the cleanse”, but that could explain why you felt better after your colonoscopy. Perhaps you had an overgrowth of some bacteria that was normalized by the prep process.
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I did the same about a year ago. Cut out all of the same, started feeling better and now do a quasi paleo diet myself. I lost ~60 lbs! Feel great too sans the ES lol…
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Really glad to know changing your diet helped you physically (except for ES 
).
We’re trying to figure out the logistics of my surgery. Dr. Hepworth wants me to stay out there a week. It’s about a 9 hour drive from where I live. My wife might fly out there and then fly back so she can get back to work. We have some family in the Pueblo area that we might be able to stay with and my mother-in-law could come watch our three kids for the week. Do you think I would be fine driving back solo a week after surgery? There’s a few ways we can do it but another option would be both of us flying out there and back and then fly out there for my checkup a week after surgery.
The only issues w/ you driving home are that your neck will be sore & may be a bit stiff so turning your head to keep a wide visual field while driving might not be possible. Another issue is the narcotic pain meds you’ll be Rxed & may still be taking a week post op. Driving while “under the influence” of those is a no go.
Flying is expensive as you know. Might be better for your wife to fly home while you stay w/ relatives in Pueblo then you fly home after your appt. That would be better than you flying home then back to Denver then back home again. 
After my first surgery I couldn’t drive safely until about 3 weeks, as it was just too uncomfortable to turn my head properly, so no way could I have driven a week after & definitely not that far! I know we’re all different & recover differently, but I think for most people it would be too much…& as @Isaiah_40_31 says, there’s the issue of meds too…
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Fortunately for the drive from Denver to Kansas City you don’t need to turn your head and meds are almost a requirement. 
Just so much unknown about how I’ll be doing post surgery. I really wish they could have got me in this summer. We’d just pack up the whole family and drive out there.
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The summer isn’t over yet! @hyperichard had his surgery bumped up on short notice last Dec., but once in CO, he got COVID & couldn’t take the appt. Very upsetting after traveling all the way to Denver for the surgery.
Unfortunately my wife reports to school August 5th and the kids start a couple of weeks after that so not much time left.
Just who ?
So you’re “down to the wire”. I’m sorry it didn’t work for you to get in sooner but I’m glad you have a surgery date! 