Kind of used to it at this point 
I tried having a chiropractor that uses atlas adjustments for about 3 or 4 months and didn’t see any change. Do you know how long it took others to see an improvement?
@stuuke - I think that if you were going to have improvement from the Atlas Orthogany, you would have noticed it in that time frame. Like any therapy, some people get more immediate results & for others, it can take awhile.
Wish I could help you w/ your question about Dr. Fargen. I know we have members who’ve seen him. Maybe start a new topic w/ your questions to grab the attention of some who haven’t been on here for awhile.
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I found the NP’s email address in the FB group and sent her some questions. It looks like she’s on vacation now so it might be awhile. I might also start a new thread here. It looks like several in the FB Group have had the procedures done with Dr. Fargen. Some caution against LPs but most seem ok with them.
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I just received a voicemail at 7pm on Saturday night from Dr. Hui’s office calling about my March referral 
It’s the first I’ve heard from them. Got to love the speed these doctors move.
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@stuuke - That’s pretty hilarious but sad about how long it took for Dr. Hui’s ofc to get back to you. At least they finally did!!
I’m glad you’re checking Dr. Hui out as well as Dr. Fargen. Seeing him would be a great excuse to go to Hawaii!! I’ve heard nothing but good about him. I expect he does video consults as traveling that far just for an appt. seems a bit outrageous. It will be interesting to compare his approach for your situation with Dr. Fargen’s. I’m really curious if a stent is necessary or if space can be made between the carotid & SCM so the jugular can have some room to expand. SCM is innervated predominantly by the accessory nerve but also by the cervical plexus. I’m wondering if your styloid on that side did some longer term damage to the accessory nerve that’s taking more time than normal to heal.
Please let us know what you learn from the two doctors & what you decide to do.
I probably should do a zoom call with Dr. Hui. I just watched the web seminar they did and the first thing he talks about is having a patient commit suicide and that’s one of the things driving them to find more answers. It does seem to ring hollow when you take 3 months to make contact with a referral.
I spoke to Dr. Fargen’s NP this week and she mentioned a couple of things. One is that they would be able to put a stent in if I needed one while I’m having my venogram and LP. She said that some insurance makes them wait at least two weeks after the diagnosis though which would mean another trip to NC and much more expense. She also said that if it is a muscular issue that the stent probably isn’t strong enough to hold it open.
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Interesting as the NP’s info is contrary to what @KoolDude just posted in another thread. NYC surgeons? - #105 by KoolDude
I wonder if there are different kinds of stents w/ some being more resilient to closure than others?
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I heard back from Dr. Hui’s office. They said my options are
- Come to Hawaii to meet in person
- Have an online video meeting at $750 out of pocket
I haven’t looked into it yet but I’m guessing a trip to Hawaii is out of the question financially and $750 out of pocket isn’t much better. Pretty disappointing.
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That is pretty standard for these specialists in my experience. I paid $1250 out of pocket for a first phone consultation (not even video) that lasted 20 minutes for my fusion. However, I knew I needed the surgery so it was well worth it in my case. Unfortunately our care ccmes at a premium. I’m sorry this not easier for you. Weigh your quality of life with the cost, only you can make that call. We tend to have underlying problems that need to be addressed to gain traction. It is a rough place to be for sure.
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I guess I’m surprised they can’t do Telehealth appointments with insurance. I’ve done those with Dr. Hepworth. Would there be any benefit in consulting Dr. Hui over Dr. Fargen? I guess I can go ahead and have all of my imaging sent to Dr. Hui just in case.
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@stuuke, That’s a tough question. It’s my opinion that the more eyes on the scan images, the better as more details might be noted.
You can contact your insurance company & ask if they’ll cover the cost of a second opinion video appt. If they do, & if Dr. Hui’s ofc won’t bill your insurance, you can request a superbill from him & submit it to your insurance company yourself. I know PPOs will cover some non-preferred provider fees at a reduced rate, but I also know from experience there is often a HUGE deductible that needs to be met first.
You could also either post them here or ask @KoolDude via PM if you can send them to him for his opinion. If you do, use dicomlibrary.com which anonymizes your images.
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Hui is a NIR, Fargen is a neurosurgeon, so they will look at your case with a slightly different lense. Both would be very helpful if you can swing it.
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I think I could actually fly there for less than the telehealth appointment. Of course I’d still have food and hotel but at least I’d get a trip out of it. I just feel like I’ve spent so much on Caring Medical with flights to Chicago and Fort Myers then Dr. Hepworth with multiple trips to Denver and now Dr. Fargen in Nortth Carolina. Not to mention all of the money I’ve spent on every alternative medicine imaginable. I’m a photographer with a business still recovering from the pandemic years married to a teacher so unfortunately money has to be a factor. I know there are people far worse off than us that deal with these specialized medical issues. I just don’t know how they do it with the system we have. You would think telehealth would be so much more accessible now.
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I totally agree about telehealth, however, my husband explained the hesitation for that format to be used in many situations: He traveled a lot for work before he retired. Sometimes it would be from West Coast to East Coast for a one day meeting i.e. gone today, back tomorrow. I asked why the meetings couldn’t be done virtually, & he said because body language & facial expressions were just as important in communication as the words that were spoken & these aren’t always obvious in video conferences. As we have seen w/ the advent of Zoom & other similar platforms, video chats often lag or disconnect so important information doesn’t get conveyed in the manner it needs to in order to create the necessary impact. That’s the best I can guess - there are some doctors who want to see their patients face to face to be better able to assess & discuss a serious health situation.
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I think if I had confidence that Dr. Hui would resolve my situation it would definitely be worth it. It’s just hard to know.
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@stuuke I watched that seminar too, and was struck by Dr. Hui’s humility when he spoke of the patient who committed suicide. But I am saddened to now read about the lack of response you’ve received from his office and to see that patients are expected to pay $750 out of pocket for a telehealth consult.
I’m not here to bash the medical community, but I’m not going to bite my tongue either, especially not in light of the extraordinary measures that those of us with ES have to go through to receive a proper diagnosis and care. It’s like being a contestant on The Amazing Race, except CBS isn’t footing the bill for the out-of-network adventure and no one wins a million-dollar prize if/when one of us does cross the finish line.
I truly hope the medical community becomes more informed about ES, and that as it does there will be greater access - both financially and geographically - to care.
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That’s the official version…
Just curious…Is there an unofficial version? It did make sense to me after experiencing the frustration of “real time” meetings on Zoom & having people freeze or get dropped out of the meeting.
@Isaiah_40_31 Informal chats between the meetings. Lunch together. Drinks after work. All that bonds people.
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