Hey guys! I’m Ash from Aus & I’ve been researching & reading all of your wonderful insights & so much knowledge from many of you who seem to know what it’s like living in an invisible nightmare most people cannot seem to comprehend unless experiencing or witnessing severe rare illness or pain 
I have a very raw & traumatic history of why I’m here but I’ll share in another post when I’m brave enough to be vulnerable & you get to know me. I am currently typing from bed which is essentially where I’ve been fading away deteriorating for the last 3 years. As many of you my experience trying to navigate a sudden & severe onset of debilitating pain & complex misunderstood illness has been a genuine nightmare. I have to be vague with some of the level of detail I provide due to medical negligence/systemic coverup (hope to deal with this when I’m strong enough). Essentially the reason I am still breathing is because I need to find a way forward for my beautiful 12 yr old daughter 
. I have read many posts from fellow members & EDS 
& the manifestations of connective tissue complications & comorbidities that link to eagle & vascular/venous involvement . I have tried to advocate for myself to find quality care & neurosurgical guidance for the severe neurological & cognitive decline since becoming severely unwell following a post-operative head injury & surgical device complications 12 hours after spinal cord surgery. Needless to say this escalated in 2024 prior to having correct diagnosis or having any knowledge of what hEDS, CCI or chiari was & I’d been placed in the psychosomatic, past trauma oh it’s a chronic migraine category with a dx list of every invisible illness & mental illness the medical regime labels when they don’t know what to do with you/believe you. I realise now I’ve always had chronic pain but we think it’s normal when all the women I was raised with in my family were also sick. The symptoms began with trigeminal/occipital neuralgia, ice pick type pain in my neck & head, syncope, blacking out, (thinking I’m going blind) TOS type symptoms, ME/cfs & took me from being a passionate & driven creative tattooist & entrepreneur to an inpatient psych patient on a PTSD ward within 5 months. Most patients I lived with are just like us with debilitating illnesses & pain. Serotonin syndrome is no joke & I can guarantee all of the meds pushed on me as a psychological solution to what are very real structural & multi system disorders drove my nervous system into complete chaos. Over a following 2 year period & over a dozen expensive surgeries & invasive procedures the soft tissue injury, scar tissue, ligament damage & on going impact of unaddressed head trauma is what I am living with now. I don’t have access to the care I need locally so I’m trying to find answers internationally for suspected Chiari/ stylojugular, severity of CCI w my crazy inflamed neck. Vascular conditions run very strong through the maternal line so I’m eager to find some clarity on why I’m so disabled, will be grateful for connection with others & hopefully some relief. I’ll do a separate post linking all of my symptoms, trying to work out what is stemming from each source is so difficult when they all overlap! Also I know you can’t give medical advice on my imaging but I will be very grateful for your opinion or what you notice so I can add another piece to the cluster **** puzzle 
I’m so sorry that you’ve been ill for so long, you sound amazingly brave and strong, to still be fighting & advocating for yourself, what a role model you are for your daughter 
It’s no consolation but I’m sure lots of members will get your story and have complicated issues too, so here are some links and suggestions of doctors if you are looking internationally:
Kjetil Larsen has interpreted lots of scans for members and is very knowledgeable, he spots things that are often missed, he’s done lots of articles but here’s one which might be helpful:
@Snapple2020 has EDS and has been really helpful with info, she posted this link:
FREE EDS RESEARCH Symposium April 9th & 10th - General / Research Papers - Living with Eagle
@jobby99 suggested Dr Patti Sullivan as a knowledgeable doctor, here’s a link to an info video:
Upper cervical chiropractor - Symptoms and Treatments - Living with Eagle
Dr Vincent Gilete Barcelona has been mentioned several times & is an expert in CCI, AAI, Chiari, OTC. Dr. Gilete | CCI & AAI Neurosurgeon Specialist
Dr Bolognese isn’t on our doctors list, and it’s a long story I can share with you in a PM if you want, he’s been mentioned as very knowledgeable too and has done surgery for @jyoti :
Homepage - The Center for Neuro-EDS
I don’t know if this is at all helpful, but @Chrickychricky posted this info:
Symptomatic.me | Understand & Heal Neuroplastic Pain
I hope that you’re able to read some of this okay, is that hard for you to do?
We can look at CT and MRI scans, and we may be able to see something and give you some advice. But we are not doctors.
Welcome to our forum @Bendyandbrokengal! I’m so sorry for what you’ve been through & for the journey you have ahead. I hope we’re able to offer you support & helpful information you haven’t received from anywhere else. @Jules has given you a great reply w/ lots of good information. I hope your able to read & “digest” it all!
We’ll be happy to look at & give opinions regarding your CTA when you post some images.
Since you referenced s, are you familiar with the Zebras Underground site? Here’s a link to subscribe if you’re interested:
You will be interested in the July 9th newsletter entitled: The EDS Map I Wish Someone Had Handed Me 15 Years Ago.
Zebra underground seems like a good resource. I don’t think it would take the place of a psychologist unless you are like me and very introspective to link deep seated emotion and corresponding behaviors. I guess ultimately you have to be ready for a fight, whether it is truely a battle of mind vs body or a physical need that would essentially allow for an easier reset of the cycle (pain → anger → act out → fatigue → worry → anxiety/depression → and back to pain).
I always consult multiple sources before making decisions about care, but sometimes you have to trust your gut. It helps having seen probably over 500 different providers. I think you intuitively start to know who is going to be more helpful before actually meeting them based on their research, training/fellowships, employer, etc. It is helpful to start reading research even if you hate it, because you will start to learn to pick out key differences in two disease processes that are essentially indistinguishable based on their differential diagnosis. And you must always realize that not every problem has a name, but you can still treat it based on the way it affects the various systems in the body.
Research from U.S.A. (includes some international papers on pubmed as well)
We deal mostly with “down regulating” in the chronically ill community. This skill is what they are charging hundreds of dollars for you to learn in various courses. If you feel like you can’t talk yourself down, then that money is probably well spent. Cognitive Behavior /Dialectic Therapy has a few easy to follow affordable workbooks along with other methods named after their authors to combat the mind’s role in causing more harm to the body. These are probably easier and less costly than trying to stay on some 28 day program with expectations that you may not be able to meet in regard to time spent participating each day. I hope that you start finding more answers than questions.
I personally think that Kjetil Larsen writes excellent papers. I have not seen him, but I have personally met doctors that thought they were first to discover a new diagnosis, but I let them know they were 2 years behind Kjetil to their amazement. They didn’t use the right “keywords” when searching and never found his research. He clearly pays attention to little details other providers miss routinely. We definitely need more providers like this in medicine, but honestly the current framework and expectations for therapists / physicians are problematic and smart caring people ultimately choose other professions.
It would be awesome if we had some more doctors on the Autism spectrum, because they have different skill sets to tackle complex problems. Ultimately, the insurance systems suffer from a long list of problems and government care models can sometimes make you wait years to get treatment and sometimes many of the best physicians choose not to take insurance and/or leave the country. I like the fact that some of my physicians have “Masters of Public Health”, because it shows their deeper knowledge of the system that they must navigate themselves. Let us know how things progress.
Thank you for an excellent & insightful post, @jobby99. The links are also much appreciated. How are you doing these days?
Welcome to the forum @Bendyandbrokengal! 
Hi Bendy & Broken,
Sorry the past couple years has been tough. I have dealt w hEDS for 50 years and my 4 adult children are dealing with it in some form or another. My youngest, now 30 started passing out at age 17, then became disabled at around age 15 and was DX with POTS. I have had many years of neck issues, TMJ and several other DX. I had styloidectomy in 2020 and then IJV decompression and C1 shave in April 2026. I just had my post-op appt and a pre-op of sorts for my daughter. We both have been going thru testing for other vascular compressions such as nutcracker, SMAS, & May-thurner among other things, including TOS. We are showing up positive for many of these compressions and consulting to see where we fall in level of severity. We are taking the top down approach.
My daughter just went thru extensive workup for CCI / Chiari , and will be dealing with her significant IJV compression. The doc says lymph tissue gone awry encasing the IJV/Carotid down below (caused from inflammation) and she has evidence of Intercranial Hypertension. It is not uncommon for us hEDS to have POTS & MCAS. We are both on Cromolyn Oral for the MCAS and will be adding more as we get more knowledgable and a provider to manage it. If you haven’t already, MCAS should be on your list and they seem to think it is the driver of a lot of our problems. I have found a good resource of education in the podcast of Bendybodies w Dr. Linda Bluestein:
I don’t know enough about your history to say why you are passing out…It could be POTS. If you have family history of vascular conditions, you may want to have genetic testing to see if you have Vascular EDS. There is no gene identified for hypermobile type but there is a gene for vEDS. It’s important to know if you have the vascular type. Im not sure what country you are in, but it would help guide directions for you. IM currently down the rabbit hole of CCI/Chiari and more than happy to look at imaging. Im not as good as some here but I’m getting better.
Thank you for the compression syndromes chart, @Snapple2020! Very helpful!
It really does simplify it, doesn’t it? I pretty much have all of these to some degree. 