It’s true experts are few and far between, becoming a health tourist was bit part of my life for last year. But don’t give up. Many experts do remote consults now,which can help if they have expertise you need. D
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@jteleia - I’m sorry for your pet situation & how that could prevent you from getting the care you need. If I lived closer, I’d be there in a snap to help take care of them. I grew up w/ quite the menagerie in our home & love all animals. I’m sad there are so many miles between us!! Of course, I could use this as an excuse to visit your country! 
I’m not sure any of our members w/ VES have migraines or headaches all the time, but they do have fatigue & brain fog most of the time. Your shoulder pain & even neck pain are probably related to impingement of your accessory nerve by your styloid(s). They are likely not related to vascular compression. If your neck/ shoulder muscles are compromised by nerve pain, it can cause you to subconsciously change how you use them which can call other muscles into action to “help”. This puts those other muscles into a compromised position which translates down the body to other muscles & could be related to your hip pain. Our bodies work so hard to thrive that in the process, they often over compensate & pain is the result.
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Thank you. That is so kind of you. We will have to find some sort of pet sitter to come to the house so yes, if you want to come to the south of France, you are welcome! We have a cat too but she is easy. I also think the big issue is the compression of the vagus nerve, as well as possibly these other nerves, but the last radiologist who did the CT scan pronounced everything was fine and pretty much walked away, despite that his own 3D images showed NO jugular vein on the left. In fact the scans show nothing coming out of the carotid foramen either which I also find perplexing but I haven’t even touched that item. I hope the angiologist this time can have a little more insight on the veins at least. Since I have been dealing with pain issues since I was 18 after a car accident (and multiple whiplashes and a head injury since) it’s been a long road with pain and again, not sure it’s b/c of ES or all the injuries, including cranial cervical instability–another diagnosis that’s a question in my head as possible. I just wanted a doctor to give me a better than 50/50 chance that this nasty surgery and scarring will makes things go away. My fatigue and brain fog as well as POTS, MCAS and other symptoms can all be related to the mold illness and ME/CFS so it’s a bit of a puzzle b/c so many of these issues have the same symptoms-however, many of them involve the vagus nerve being in sympathetic/cell danger response mode much of the time and if it’s compressed by the styloid and my fat jugular, I can only hope that the surgery would help the vagus nerve.
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Drs. in France are notoriously behind the times when it comes to being willing to do telehealth. I have begged and disclosed my health and other issues about travel and gotten a no every single time. I haven’t the money, energy or motivation to keep traveling around to doctors. The dr. in Germany is the best bet but it’s a long process to get France to approve the surgery and I would have to prove no one in France could do it. I can’t even imagine that process so I have all but given up that idea. I may look into it again but I would need to time the surgery very carefully as I have travel planned in February I can’t get out of and I want to be recovered before that or have to wait to do surgery in the summer (which isn’t ideal since I will have to keep my neck covered for 6 months according to the dr. to keep the scarring down. It’s hot here and getting overheated also makes my symptoms worse. I will look into the French process one more time though. I would rather have the German dr. with experience in VES do it.
I haven’t heard of needing to keep your neck covered to prevent scarring. Doctors do recommend keeping sunscreen on the incision after surgery if there will be prolonged sun exposure, but it’s more to protect the new/recovering skin than to prevent a nasty scar. Some of our members have chosen to wear a light neck scarf during recovery.
In most c ases, the surgeons who do surgery through the neck try to make the incision Ins a place place like a natural neck crease or along the hair line (depends on the doctor) so once healed, the scar is nearly invisible.
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Hang in there jtelia. Baby steps. dont give up. 
jteleia,
If you have POTS/MCAS it may or may not be from the ME/CFS. POTS alone can create alot of your symptoms and creates extra layers of complexity to your case and all the more reason to seek out a highly competent surgeon and accurate diagnosis(s). My daughter has severe POTS and early on some of her first symptoms were migraines. When she first started passing out, they passed it off as a vaso-vagal response and it was “normal”.
I had some whiplash accidents at age 17 and 21 and struggling with neck instability problems for decades. I lived on the services of chiropractors and firmly believe in their value. Because you mentioned instability, have you ever explored Ehlers- Danlos Syndrome - hypermobility? It is very common in POTS and often a source of neck instability and chronic pain. I have struggled for years with neck, arm, shoulder pain. I have been to different physical therapists that are skilled in structural re-education which can be helpful. I also sought out cranial-sacral specialists who are good at subtle cranial work. I suggest looking on Upledger Institute International website for people in your area. Many at physical therapists and/or occupational therapists and skilled at body work.
Back to ehlers danlos, with your headaches,etc, you may want to seek out a neurosurgeon who has expertise in CCI and Chiari syndrome for an in depth evaluation re: vascular structure in brain/neck. I agree with Patient D. I found neurologists a bit limiting. You will likely need to be a “Health Tourist” as patient D suggested. Im in US and I have to travel out fo state most of the time.
here is provider links: https://www.ehlers-danlos.com/healthcare-professionals-directory/
As an FYI: Dr. Samji in the CA (ES Surgeon) will do a virtual appt if you send him your CT scan for about $500-$600. At least you could get an expert opinion on ES however IJV compression is not one of his specialities.
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Thank you. That’s another rabbit hole I have not explored. It’s very difficult in my area to have any competent specialists and the physios here I have found incredibly useless. It’s not like in the US where I am now in France. It’s like a medical/health wasteland for anything not in a little box. Even normal specialists (if you can get an appointment) are over 2 hours away each way b/c I literally can’t get appointments with anyone in the city closest to me. I just don’t have the energy to keep chasing down more people. I don’t have extreme POTS. I don’t actually get to passing out. I get lightheaded at times if I stand up too fast and have had vagus problems start right before the migraines started so I will look up more info on it and check out Upledger. I remember coming across that for something a while back. I’ve seen a lot of chiros in the US and other drs and no one has ever mentioned EDS, however, I don’t think the folks I saw where I lived at times were all that informed on the odd stuff. I’ll look up more about it. I simply can’t afford a lot of health tourism so I have to manage the best I can. I’ve thrown so much money away on drs and specialists and test over the years and i have no retirement money to speak of so I can only do so much. Chasing down the ‘one’ diagnosis could be a life long process since drs all have different opinions on what to call something. I seem to have less mobility, not hypermobility so EDS doesn’t seem to fit the definition on that website but thanks for all the info and encouragement. I have such memory problems among other things that I want to start with the neurologist and see about a referral to a vascular specialist or a neurosurgeon but again, finding just the right one that doesn’t blow me off when the appointment is a 5 hour drive roundtrip is pretty unmotivating. Most will not do telehealth. I have begged. Do you know what the ‘gold standard’ test is for VES?
Thanks. I was a little alarmed b/c the dr. indicated there would be a VERY long scar and I have seen much smaller scars on people so it is a concern.
I think gold standard for diagnosis of VES is CT Angiogram.
If you can get a local doc to order it, that would be helpful. Just need to make sure doctor orders are specific to “evaluation for the vascular ES” for the radiologist to follow. This would allow you to rule in or out whether you have vascular compression with Eagles. If that diagnosis is confirmed, then you can set your sights on seeing an ES specialist that has IJV compression expertise. I went to a highly skilled ES surgeon however his speciality was not with IJV or lets say he didn’t evaluate to the degree some ES specialists do for compression. If I had to do it over again, I would have made a different choice in surgeons.
I get what you mean about medical wasteland. My good PT person is an hour away without traffic. It does get tiring chasing down doctors. I flew to CA to see a vascular surgeon at considerable cost just to be blown off by doctor and sent on my way to “go get physical therapy” when that is what I had already done for 4 years! I was pretty upset about that one myself and even filed a complaint about it. Took me a couple weeks to get over that one. Having doctors dismiss very serious symptoms can take you down a couple notches. I usually regroup, dust myself off and get back up and never give up. I may be down but Im not out. I already now it can take months to see specialists and that I will likely have to travel. I get appts on the calendar in advance and plan accordingly. If I need to cancel, I do. I try to cover all the bases and have a revolving back burner. I do get overwhelm sometimes and have to take a break. Sometimes its best to step back and regroup and develop a strategic plan to address the most problematic symptoms.
As an FYI: brain fog and memory issues are common in POTS patients. So are sleep issues. It could be related to overactive nervous system common in dysautonomia/POTS patients making it difficult to get enough hours in REM sleep mode. Fatigue follows as well as chronic pain worsens with lack of good sleep. It’s a vicious cycle.
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@jteleia - Since you have IJV compression, you might want to have a Venogram done vs angiogram as I think the angiogram looks at arteries & venogram at veins, but I could be mistaken.
A CT w/ contrast either done dynamically (head in several positions) or at least with your head in the position that makes your symptoms worse is the ideal test for VES.
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