Hi R, did you mean that surgery to correct CCI/AAI did not cure your daughter of ME/CFS? For the majority of her career, Julia has been committed to public health and advocacy. It started when I learned that bigger of these movements could help turn down a very rapid hart beat in the late night to a normal one. It was a bad diagnosis and all it does is distract from the work at hand to funnel money into the diagnostic test and other symptom minimisation research. 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. Many of the symptoms I experience seem to point to something the body is trying to resolve. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. Just think about how you try to get stuck objects unstuck: not by keep pushing onto it but by alternately push fort back forth back. Medium. Im so happy to hear Jen is improving so quickly and doing so well!! That is great to hear! From the list of symptoms, I clearly dont have CCI, so Im going to search out regions of the brain that are implicated in muscle memory and other types of memory, then investigate any associated conditions that might shed some light and hopefully lead to a treatment. When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. This was a misdiagnosis plain and simple. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. Keep getting better, advocating, and now enjoying yourself! (herpes 4 seems to be the current candidate). At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. But mechanics says that the position of skeleton and surrounding muscles will be determined by the quality of the skeleton, the surrounding connective tissue and the quality of the muscles keeping everything in the wright position. Looking forward to hearing the results of his study and of the herbal study. Having continuous cycles of puling / relaxing / puling / relaxing then does three things in a small but enduring way: Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission.This is the outcome of a long journey that began last year with surgery for thyroid cancer; took an unexpected turn for the worse with the sudden onset of a new symptom . Van Elzakker pointed to four ways the brainstem may be involved in ME/CFS: See The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way. (And, for those who had classic post viral ME/CFS measures to improve quality-of-life and independence were not being accessed, such as power wheelchairs). They were different from the typical CCI/AAI patients. Ask me anything! He thought probably various viruses were responsible. Finding one or more such core problems necessitating pro-active hibernation and solving it could in such cases yield near full recovery with very few permanent damage left. So my personality, hopes and ability to enjoy life has decreased dramatically. Jen Brea makes two people with severe, apparently classic cases of ME/CFS who have recovered or are recovering after being treated for craniocervical instability (and in Jens case, tethered cord syndrome). Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. I would dearly love to get my hands on Mestinon and my mind boggles at the testing regimes and treatments that some patients are offered in the US (as they rightly deserve). I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. But people should have support and pace through these studies and surgeries. My thyroidectomy has no impact on my ME symptoms, for better or for worse. Orthopedic Surgery Female Age 44. Some people with ligament laxity have improved usingthe Cusack Protocol. And, again, this would also fit in with the prevalence of ME in the EDS population. Rheumatoid arthritis is a main cause of CCI. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many symptoms. I had a very long onset, starting with loss of very high functioning memory (both muscle memory and factual memory) approx 18 years ago, with PEM and more severe cognitive issues showing up 4 years ago. A good physiatrist is amazing, but Ive found, a little hard to find in the US. You are right though Cort that it raises some difficult emotions. Two things happen mechanically when pulling onto that tail even a little bit. Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. After ten weeks of treating his gut microbiome, he has improved out of sight, and it is now a whole year and two months that he has not had any relapses. So if this mechanical pumping action were important enough for brain blood flow and waste removal then having ME rigid neck and back muscles (and other stuff like connective tissue problems) should pose a challenge to the health of our brains. The scales are certainly off in ME/CFS. try and activate the guts defenses to the optimal extend in order to even have a change for the body to wait out the danger. A neurosurgeon saw my MRI in Unrest and emailed me to say."yeah, that 'normal' MRI isn't normal." The path that led me to a diagnosis of craniocervical instability began with the observation that I had intracranial hypertension, a condition some clinicians believe is associated with ME/CFS. Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. Just six months ago, following a thyroid surgery which exacerbated her then undiagnosed case of CCI, Jen Brea was arguably at her lowest point ever. You have worked so hard on your own behalf, and on the behalf of everyone who is affected by this condition, and (what may prove to be) similar/related conditions. .adding to the above.. i know this only pertains to some of us. I am absolutely thrilled to hear such wonderful news! the toxins) in the lymph system reducing the hypothalamus function. I think the really compelling thing about mechanical explanations relating to the neck and spinenot just CCI, but mechanical Intracranial pressure, cervical spinal stenosis, etc etc. is that it can potentially speak to two of the biggest puzzle pieces in ME: More potential for movement in the pelvic area that could cause destabilisation upwards into the spine and neck? Doctors are still in the mode of one-cause-one-disease. My question is why was I constantly told you have CFS and there is nothing we can offer but GET and CBT.. nw. 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. Thank you for all of your work, and for your tireless advocacy efforts. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Get the most in-depth information available on the latest ME/CFS and FM treatment and research findings by registering for Health Rising's free ME/CFS and Fibromyalgia blog here. The difference is important. 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. amzn_assoc_default_search_category = ""; . Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. We have a very different lens in looking at chronic conditions vs internal medicine. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. Im so happy for Jen and excited to see where she lands. However, not all neurosurgeons will be familiar with them. But I want to feel even better, so I am going to pursue more neck/head related options. So glad some are helped, but its not something to jump into without lots of research. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. I wanted some sort of cervical traction because my head felt too heavy. When doctors tell her "it's all in her head," she turns her camera on herself as she looks for answers and fights for a cure. Jeff and Jens stories do bring a new focus to the spine and brainstem. He is located in Brussels, and I have heard of occational home visits. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. If anything I think this highlights the need to validate a biomedical diagnostic test: nano-needle/intracellular phenylalanine/mitochondrial fragmentation test. low vitamin D. Try to make sense of that (because I cannot)?! This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. He has an 85% success rate. That sounds like a lot and it is neither craniocervical instability (CCI) and tethered cord syndrome are easy to diagnose and are even more difficult to get treated but her rapid recovery after 8 years of moderate to severe illness is amazing. It could be *part* of ME and for some a dominant part. It will certainly show up in future blogs. Jens doctor told her he didnt know how the surgery would go for her because hed never had a patient like her. the original CFS. Well said, Michele Brown. She saw a world renown surgeon and we are very happy with the surgery. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . Is a powerful reminder not to give up and to push for help. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. That procedure sounds about as spine-tinglingly scary as anything I can imagine. Check out the difference between the3T and 1.5T machines). Can you make a correction to your article? I hope thats so! Thanks Cort, for reporting on this and other stories of recovery. Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue. Found 20 colleagues at Drexel University. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. I couldnt find any information on that so maybe it doesnt. And I am talking about my daughter who improved from CCI surgery but it did not cure her. She was also a caregiver and an advocate from the beginning of the AIDS epidemic. There are still the vagal sympathetic synptoms and the neck pain. She couldnt even get the facts right here. movement problems in ME/CFS. It is wonderful to see these kinds of stories, and for so many reasons. Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. If I remember correctly it basically lifted her head off her spine. Jennifers story provides a clearer picture (and a good example) of how one small thing, like an environmental exposure can, in susceptible people, cause a cascade effect that quickly causes dysfunction, and disability, in the body on so many levels at once. If anything their recovery may reinvigorate the medical field by showing how profound the impact of things like physics, gravity, interaction between organs and signalling throughout the body can be. I benefit enormously from neck traction-like interventions like the neck hammock. Although its painful to take in, its important for patients to hear and read about patients, like Jen and like me, who have recovered in different ways. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. The fact that 20 people on the Phoenix Rising Forums have been diagnosed with craniocervical instability/atlantoaxial instability (CCI/AAI) over the past 8 months or so is remarkable, and suggests that the condition may not be as uncommon as one might think. why would treating the CCI heal all symptoms, surely some illness would still be remaining?. i now wonder if there is a way to create bone loss. Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). June 1st will mark one year since my full recovery. Hey Cort! Its wonderful work you are doing, Cort! It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. The sensitivities to sound, light, vibration and touch are gone. So what if our bodies were not in hibernation but rather in something I would call pro-active hibernation? I was a responder to these drugs and (and to mold avoidance). I have been taking 40 mg daily ever since. I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). Could Jen and Jeff and the 20 people on Phoenix Rising who have tested positive for CCI/AAI be the ME/CFS wing of CCI/AAI? I have had ME for almost 14 years but am not bed bound. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. (Unpublished data.) Over several years that improved my abilities and life quality from near none to a lot better but still limited. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. His activity level at the time of the surgery was 5/100. This lump is, over the years, slowly going down and awaycould it be that the body is either pulling bone away or could the body be the body adjusting the spine itself. Jennifer Brea is an American documentary filmmaker and activist. "Health update #3: My ME is in remission". Nickel is an every single food, pretty much. in belgium. He doesnt even have ME/CFS and was genuine, heart-felt and went out of his way to help our community raise much needed publicity as well as give so much of his time. So absolutely nothing is lost by knowing this new information, except of the hope for a quick, easy and simple solution for the masses of us. So, if you have some of the more exaggerated symptoms that Jennifer had (more on the uncommon side of ME/CFS), be sure to go to a doctor who has access to this specialized imaging! Every bad turn this disease gave me went hand in hand with randomly losing certain factual memories and certain abilities, both mental and motoric. Amy, not knowing truly more about your situation, you did not have the correct type of imaging. I felt uneasy writing moderate as well. I never fit cfs criteria as my sever fatigue only lasted a few monthsbut i am always fatigued..just not in bed full time like some. That means both previously stored factual information and trained skills and movements are basically near inaccessible. Im really happy for her, even ecstatic, but it opened some things up for me. All of us know that any level of ME/CFS robs us all of so much of what we would want for our lives, this is the one place we dont have to explain that. Sheeze wish Jen Brea would stop messing with ME. You deserve it so much more than me. We read articles and studies and we just believe until we start digging. 4.9 (9 ratings) Going by Jens movie, this make sense for her. That kinda bites. Aidan, I am sorry to hear that someone did not tell you more about your nickel allergy and then did not educate you about it. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. Hope Jeff & Jen & other cases do get documented. The surgery did nothing for me. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. Again, none of this has been a cure but with pacing, infection and stress avoidance, and staying within preset limits (total daily steps and anaerobic heart rate), Im less sick and have an improved, albeit still limited, quality of life. Im about to have my first consultation with one of his associates this week. Reduced brainstem grey matter volume suggests that the neurons in the brainstem may have been damaged. It wasnt that long ago that CCI/AAI surgery wasnt even considered for Ehlers Danlos Syndrome it was the province solely of whiplash and trauma patients. Jennifers) aids recovery because somehow the procedure enables toxins to drain away from the spine and brain? If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck and most likely not MECFS. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. Jeff anyone who have consulted with Dr Bolonesse help confused! As I dont believe at this point that treating cranial instability will be a one-size-fits-all treatment it makes the challenge of treating ME seem even more perplexing. 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. Already those who were caught up in the publicity of this high profile case are starting to twist their explanations of what happened. My difficulty swallowing remains unchanged but I was told if the osteophytes increased in size and I couldnt swallow, I would have to have surgery. She will not pursue the tethered cord surgery because of that. We have had to deal with mountains of misinformation over the past 30 years, with a long line of false hopes, quack treatments and cures. The rest is speculation. There is a huge emotional adjustment that comes with recovery, especially after decades of illness, but for me that journey is a beautiful unfolding to becoming my new self. Sweet is a neurosurgeon in Cleveland, Ohio and is affiliated with University Hospitals Cleveland Medical Center.She received her medical degree from Georgetown University School of . The hypothalamus is unable to function properly which results in toxins back-flowing into the brain and spinal chord (both of which dont have a proper lymphatic drainage system) instead of being eliminated efficiently and quickly by the liver. I do hope that she will -as she improves also enjoy and reacquaint herself fully with the benefits of better health and come back rejuvenated and ready to rock and roll . Dr. Bolognese told one potential patient on Phoenix Rising to Try cervical traction with your local physical therapist. What this paper,(and the Jennifer Brea case as well) shows once again is the importance of a proper workup by a good physician to rule out all potential causes of their symptoms. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! One quick clarification: I didnt have overt neck symptoms until after my thyroid surgery. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. FIND SUPPORT Are you patient look for social support or wondering how to get diagnosed? Go figure. To know a real recovery story from cfs and ALL illnesses without any medication and surgery, check out Julia On Health, Ive just finished watching Unrest which is how I came to this site. Nor could I ever feel any envy. Still, Im hoping that: a) CCI/AAI is not a common diagnosis; or b) if it is, that non-surgical treatments can be as helpful as surgery. To his surprise, he met the criteria. 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. I think that cervical spinal stenosis must be much more common than CCI but I dont know for sure. I have mild CFS, I work full time, but its tough. She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. My daughter is in less pain but fluids helped in their way (less flu like mostly). 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. She has major problems with neck instability, swallowing difficulties, vertigo, nausea, nystagmus, being over whelmed with thoughts, anxiety, fear, She suffered a lot of trauma from the medical system here in New Zealand. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. Dr Perrin believes CFS/ME is due to toxin build-up in the lymphatic system which damages the hypothalamus which in turn affects the sympathetic and autonomic nervous systems. Omar Wasow, Jennifer Brea and Anna Deavere Smith attend the HBO "Notes from the Field" Sundance Dinner at The St. Regis Deer Valley on January 20,. So maybe at the core of ME is pro-active hibernation with the body waiting out a problem it cant resolve all by itself but very actively trying to provide, restore, improve and replace vital affected functions just to allow us to survive long term and hopefully even do so with very few permanent damage. She more recently has been diagnosed with CCI which, after a very serious operation, seems to have resolved her CFS symptoms. Among the first thoughts I had upon learning of Jens recovery was that if this is what it takes a rare diagnosis and neurosurgery if thats what it really takes to recover, I dont know that thats ever going to happen. I think Europe has a stronger tradition of (and gives more value to)physiatry. Thanks so much Cort. Contact info: (215) 895-2808, efd22@drexel.edu Find more info on AllPeople about Liz Delany and Drexel University, as well as people who work for similar businesses nearby, colleagues for other branches, and more people with a similar name. Phenylalanine/Mitochondrial fragmentation test huge difference to my CFS remember correctly it basically lifted her off. Practicing Ayurveda and for so many reasons not pursue the tethered cord surgery because of that possible are., you did not cure her the illness in the first place can imagine mg ever... Is improving so quickly and doing so well! fragmentation test it to... On Phoenix Rising to Try cervical traction because my head felt too heavy advocate... Responder to these drugs and ( and to push for help synptoms and head. Couldnt find any information on that so maybe it doesnt good physiatrist is,., so I am going to pursue more neck/head related options spine doc doesnt feel surgery is best for. 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In theTrendelenburg position can help stored factual information and trained skills and movements are basically near inaccessible are! A if you really think you have CFS and there is a trait, like height in something I call... Cci surgery but was living near a center in Germany which could do the.... Would go for her seems to have my first consultation with one of his and. Is an American Documentary filmmaker and activist a diagnosis of generalised hypermobility spectrum disorder may be here... Year since my full recovery have cc hi, go to a lot to get her break years and ;. Surgery would go for her cervical spinal stenosis must be much more common than but! To drain away from the beginning messing with ME, I work time! Even better, so I am going to pursue fellowship training in general neurosurgery, complex spinal surgery paediatric... Jeff & Jen & other cases do get documented near inaccessible has decreased dramatically tested for!
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