One of these docs talked to me about people like us having angry or unhappy brains and he can do procedure on someone and they have major improvement and on another and no major improvement. Both were after all atypical CCI/AAI patients. Brea, Jennifer (May 20, 2019). The rest is speculation. Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. I broke my C5 vertebrae and impacted my C4 and C6, so much so that there was no light between C4, C5, C6 on the X-Ray. Thats despite that I am a mild/moderate patient who can walk 2 miles on a good day as long as I incorporate enough breaks. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. Hi Cort- I cant keep up with all the reading around this issue so I might have missed this, but will their case reports be published? With EDS, having cranial instability (in addition to instability in many other places in the body) is quite understandable due to the compromised connective tissue. Besides all her ME symptoms, she was having trouble breathing, had flaccid limbs, numb, painful and weak legs, and was experiencing difficulty speaking and thinking. All it took was a series of spinal surgeries done over several weeks about six months ago. They may experience pain and dislocations, have a poor sense of where their joints are without looking, be prone to injury, have curvature of the spine, and degenerative joint and bone disease. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Do we know of any MEEPS beyond Dr. Rowes three who have recovered or had major improvements in their ME after spinal stenosis surgery with or without fusion? I'm now in full remission. Lets have respect for those who have suffered and not discredit them or what they experienced when they recover. I was told by a Woman last night to look into a condition called Systemic Nickel Allergy Syndrome I was very surprised she said this to me, a Doctor a few years back told me I was Allergic to Nickle he never said anything to me about foods, vitamins, minerals, medicines that contain NickleI was reacting very badly to belt buckles, wrist & neck chains, watches I would break out in severe itchy hives & itch until I would bleed. She now helps lead a neurosurgery practice. Her spine is still healing, but it seems its just a matter of time before Jen Breas ME/CFS is totally gone. I will put that in the blog . He is located in Brussels, and I have heard of occational home visits. By 2012, I progressively lost the ability to read, think, or walk. But Im leery of these fixes. Jen has said she will tell her story, and Jeff was lucky enough to find Dr. Kaufman. Articles by Jennifer Brea A Girl Behind Dark Glasses (Special Edition) by Jessica Taylor-Bearman | hashtagpress. She was recruited to the faculty of the Department of Neurosurgery, Institute of Neurological Sciences, in Glasgow, where she remains to this day, and now has British and Canadian citizenship. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. Narrower spinal column? At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. The body/being truly does want to heal, and its only a matter of knowing how to support that I can speak from very personal experience, having been erroneously diagnosed with another chronic incurable condition interstitial cystitis. The symptoms matched. This was a friend of mine and it was horrible for her. I am quite sure i have , also, PTSD. It is a rarer true allergy, but it is out there.This is another important point about ME/CFS. Its interesting to me to look at the mast cell angle. Ask me anything! We know Jen Brea and her husbands story on an intimate level through Unrest. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. Hope the ideas may help you in your recovery. Yes we more than ever need a good diagnostic test think, though, about how much controversy THAT will raise when some people with clear ME/cFS symptoms, onset and other tests, dont test positive which Im sure will happen! What Im really hoping, though, is that Jeff and Jens stories are pointing to a problem area that can be helped with other means. I am not an anatomist, so have no sense of the details, but it seems likely that women are built somewhat structurally different than men. Thanks Cort, but my legs are way above my head when I sleep, not the other way. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. But the other hand is less delightful. A big difference, in pertinent to this article, is our training in CCI. Socould my POTs, sleep problems, stomach pain and bloating, and fatigue have been due to a neck injury?? After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. Im sure that one day we will all have access to great medical care and the work of yourself and people like Jen sure does go a very long way to this end. Dr. Bolognese told one potential patient on Phoenix Rising to Try cervical traction with your local physical therapist. Jeff just interviewed Mattie three months post surgery. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. Unfortunately, I saw a number of diagnoses that were being missed and being labeled as ME/CFS particularly traumatic brain injury hence the opportunity to appropriately treat and for folks to heal was being overlooked. I know few of the above. Neither could have pointed to their head/neck area as a likely cause of their illness. For the majority of her career, Julia has been committed to public health and advocacy. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. I was always curious over her moderate/severe ME/CFS ?? After reading Jeffs account Mattie thought he didnt have CCI/AAI but got it checked out anyway and found, to his surprise, that he did. Im 41 now. Jen Brea. Amy, not knowing truly more about your situation, you did not have the correct type of imaging. Issie on May 29, 2019 at 12:52 pm Sometimes Im winning, sometimes I definitely arent. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? Havent figured out the solution to that one yet, though Alexander Technique helps somewhat. Merck reported that symptom improvement during a procedure called Invasive Cervical Traction (ICT) where ones head is pulled upward by a pulley system can help diagnose CCI/AAI. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? Sorry, Issie, not Issue. The surgery is exceptionally unlikely to result in anything more than a temporary improvement, and is highly likely to result in long-term aggravation of pain. I dont know about elsewhere in the world. All these things (for some people at least) help the body eliminate toxins. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. -scrub typhus (since treated) At the beginning of May, a 26-minute trailer for the movie . Learning about Jens recovery yesterday and how she recovered, blew my socks off and I dont think Im alone in that based on all the responses. Her symptoms caused by the brain stem compression & tethered spinal cord were just very similar to the symptoms of ME/CFS, she has surgery to correct the spinal & vertebrae/brain stem deformity & all the symptoms have gone!! If she had craniocervical instability (or any other variation of Ehlers-Danlos Syndrome) and that explained most all of her symptoms it was not MECFS and never was. Career Unrest . Im just reading his book and had a eureka moment. These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. low pancreatic elastase He thought probably various viruses were responsible. Hip alluded to that possibility. With my improved health, I will continue to fight alongside each of you for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. It was major for me discovering I need to fight inflammatory issues, as I have always been thin and didnt understand it is not related with weight. Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. Slowly, I moved from very severe, to severe, to moderate on the spectrum. Jennifer Brea 2.8K Followers http://jenniferbrea.com More from Medium Mark Schaefer 20 Entertaining Uses of ChatGPT You Never Knew Were Possible Mehek Kapoor in Stories From Heart This woman. Thus if the body becomes overloaded with toxins, it could act as the last straw on the camels back resulting in toxin overload and CFS/ME. However, and I state again, she was not an HEDS patient. Medium. So so happy for her! In the end, my dream is that all of the suffering caused by this disease and the large effort needed to combat it will increase understanding of this disease as a series of mechanisms, learn how to differentiate between symptoms that drive this disease and symptoms that are the result of fighting this disease and result in a sort of extensive diagnostics and treatment plan that gets to the root of our health issues. I learned about 2 months ago that Dr. Bolognese read my cervical MRI (standard supine is all he needs, unlike some others) as possible CCI, and have since begun the physical therapy routine that he uses as part of diagnosing whether the MRI findings are clinically significant. For the vast majority of their time ill neither Jeff or Jen experienced the kind of head or neck symptoms one would have thought would have accompanied CCI/AAI. 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