Rheumatoid arthritis is a main cause of CCI. My question is why was I constantly told you have CFS and there is nothing we can offer but GET and CBT.. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. Talk about a head trip! If all it took to cure it was a spinal surgery, wed all be jumping up and down with joy. That expels some of the fluid from the tail into the brain part of the bag. And right around the time that I got the sickest, I experienced a neck injury from a hair salon wash basin (they had me in it for 20 minutes and my neck was killing me afterwards and almost immediately my health took a turn). When I try to support the body in resolving the problem I believe to perceive I often get a modest amount of improvement. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. PS. FIND SUPPORT Are you patient look for social support or wondering how to get diagnosed? Retrieved June 3, 2019. They say IIH manifesting as Chronic Fatigue Syndrome, rather than going all the way and saying that this might be one of the underlying factors in ME/CFS. / CFS with her award winning film, "Unrest!" https://www.InvisibleDisabilities.org Jennifer Brea. Finally, I was diagnosed with myalgic encephalomyelitis (ME), (commonly called chronic fatigue syndrome, a condition that is the same or similar to what many people with long COVID face). With moderate brain fog, in a way it seems a cruel joke that I am the one who has to research and make sense of these things. Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. I think Europe has a stronger tradition of (and gives more value to)physiatry. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. 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. With it, the line of my spine and the surrounding tissue gets contracted or expands a little bit. All of this was noted in August of 2008 two months after my initial event on June 8, 2008. It might be best to look for a reputable pain clinic in the area, call them up and ask them about it. So weve got a small spinal fluid pump / mixer which may be a good thing. It was a long road, but I am cured. The first thing is that the tail becomes a bit longer but a lot more narrow so its volume goes down. Traction is very dangerous in CCI. Dr. Bolognese reported that a treatment plan for craniocervical instability typically begins with things like neck bracing, activity limitation, physical therapy (including isometrics, core strengthening and cardio), as well as pain management. try and summon all means to restore liquid balance in the brain, even if these have devastating side effects like providing so few blood pressure that standing up from a chair can be enough to faint and fall down. You dont have to have the energy for breakthroughs to happen. I remembered Jennifer Brea recovered from CFS/ME after spinal surgery, so maybe the surgery helped toxins to drain away from Jennifers spine, thus leading to recovery from CFS/ME? My insurance will not cover this operation, which is estimated to cost approximately $150,000. It amounts to success for everyone that I have worked with. Yes. Relative to others I have mild ME/CFS but theres nothing mild to me in something that precludes me from doing just about any exercise at all. Cort, A lot of us are going to have these presentations or one of them or none of them because the SYNDROME presentation of Hereditary Alpha Tryptasemia (a mast cell disorder) and the SYNDROME of MCAS is: Hereditary alpha tryptasemia syndrome is a condition characterized by high blood tryptase levels, and by several symptoms associated with multiple organ systems. #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. interestingly, i was diagnosed as severe back in 93 but i had slow onset starting at the age of 20, then i complete blow up of my immune system in 93 and had to stop lifei have all the gut problems..all the brain fogall the other symptoms to go along with cfs. multi- and mold-susceptible genes So many people have had CCI and tethered cord surgeries and are not cured. BUT, three months ago i started an anti-inflammatory diet (no sugar, no gluten, few carbs) that just changed the game. 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. [1][2] https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome But like Ive shared multiple times in comments, my daughter had CCI and mild chiari and tethered cord. I also wonder if the long term bed rest could contribute to ligament laxity (?). (Unpublished data.) Often the drooping brain stem will not be apparent unless a patient is upright. I do ice my head and neck almost everyday. I had constant vertigo, extreme light and sound sensitivity, sensory processing disorder problems that were so uncomfortable I would beg god to let me die. Previously, she was a freelance journalist in China and East and Southern Africa. July 3, 2020. youve forgotten them or they are lost to you. This is yet another area where Jen Brea and ME action have made such a difference: theyve provided a locus for people to rally around. That procedure sounds about as spine-tinglingly scary as anything I can imagine. I am in the same place as debs. The great majority of patients with MECFS do not have Borderline Intracranial Hypertension. 1 2 43 Jennifer Brea @jenbrea Dec 8, 2021 Didnt she had thyroid cancer and removed her thyroid? 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. Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. After three years and a dozen doctors started taking cortisol tablets and experienced immediate relief. Many of the symptoms I experience seem to point to something the body is trying to resolve. They were different from the typical CCI/AAI patients. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. The Japanese have echoed that general idea. Jennifer Brea: I have craniocervical and atlantoaxial instability. Jen never had ME/CFS. Truly is a diagnosis of exclusion. Plus, other less invasive treatment options are available (see below). 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. Is it necessary to have headaches or neck pain to possibly have CCI or AAI? Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. I was always curious over her moderate/severe ME/CFS ?? I was told I had anterior osteophytes on my cervical spine along with arthritis. I used to have ME but it is now gone, thanks to neurosurgery. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. My name is Jennifer Brea. Simran Hans @heavier_things . Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. Its a hard thing to swallow, but that remains the current state of our knowledge. The Spinal Series Pt. I didnt get anywhere. Cort, there is a profile of symptoms that our surgeon requires in addition to radiographic confirmation for CCI and tethered cord. Many people have viral infections but never develop our disease. He has an 85% success rate. This has happened maybe 8-10 times in 7 years. https://www.facebook.com/MegsEDS.MedicalJourney/posts/it-is-with-great-sadness-to-share-this-this-hits-way-too-close-to-home-this-is-n/2302315926661395/. I was diagnosed with CFS about a year ago, after several years of struggle. Jeff and Jens stories do bring a new focus to the spine and brainstem. Thanks so much Cort. 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. ), Your email address will not be published. Hendes debutindslag, Unrest, havde premiere p Sundance Film Festival 2017 og modtog US Documentary Special Jury Award for Editing. Im luckily rather immune to that. I can do occasional spurts, but exercise of any intensity other than slow walk for more than a few minutes at a time definitely cause PEM for me. Having your senses reporting different information about speed and position makes it worse. She has been diagnosed with hEDS. My symptoms start after I do too much work/exercise that includes my shoulders and neck. Jen may be the only person some people feel they know with ME/CFS. 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. Some people with ligament laxity have improved usingthe Cusack Protocol. I can understand the objection, but I wouldnt call Jen Brea case a misdiagnosis. It was all about money and about her and her film production career. Chiaribridgesreported that the ideal tests to diagnose CCI and AAI are an uprightMRIwith flexion and extension (bending ones head forward and backward as far as one can) and a 3D CT with rotational views, respectively. Two more people on PR, @mattieand@StarChild56 have recently had fusion surgeries to correct CCI. Like the blog you're reading? It means we get to see people like Jennifer Brea as being new or hybrid types in the context of both CCI surgery and future treatment. So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. Dear Cort BUT, I cannot exercise in any meaningful way (although walking is generally OK). I sleep much more better, not perfect, but fine most of the nights. 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. Surgery is considered the last option a good thing, as Jeff lists only four neurosurgeons (3 in the U.S. and one in Europe) proficient in this kind of surgery. Since my accident Ive had very few issues with my neck. 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. So I learned to go back to the basics each time that happened. Were complex beings and even a remarkable story like hers can bring up a mix of emotions. A word of caution. 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. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. Her office accepts new patients. 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. The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. I cant sleep (for years). Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . (X-rays are not sufficient to test for this condition, however.). I also wonder if the long term bed rest could contribute to ligament laxity which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS.. That road is what took me to being trained as an Ayurvedic Naturopath, medical doctor, and researcher. With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. It is time we become just as militant with those inside our community who refuse to accept the validity of recovery. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. To his surprise, he met the criteria. One person on the Phoenix Rising forums reported that she didnt have CCI but that the search for it turned up severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected and that treatments for those conditions were helping. 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. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. One day the stallion ran off. My bedsheets were brown in a week with toxins..still are. 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. I went from 40% functioning to 60%. People get defensive because we hear these stories and there is never a cure all, plus these things involve a lot of energy and risk emotionally on so many levels including continued exposure to the medical community. The symptoms are VERY similar to many of our ME CFS symptoms. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. Check out the difference between the3T and 1.5T machines). 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!! I recall a time when if i could have gotten out of bed i would have went to the basement and got the gun. Hi Ruth Being able to write an article that reflects both the happiness for Jen and being pleased for any of us who find a way back whilst recognising there are other complex emotional responses going on is an honest thing to do. (Dr. Chedda reported that she routinely does this.). I have read many stories on my EDS forum about this problem of a missed diagnosis. It shows how variable this all is some people get helped with the opposite practice. 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. 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. I had 3-level spinal stenosis surgery with fusion and decompression 5 weeks ago and am wondering if this might give me an ME improvement/recovery? Re Jen and Jeffs CCI surgery, if in theory their CCI was caused by inflammation triggered by an enterovirus that caused Classic ME in others, why would treating the CCI heal all symptoms, surely some illness would still be remaining? I myself had pectus, which was brushed off as a cosmetic issue. Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. . The saying goes, Where theres a will theres a way, right? I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. Hope that it could happen to us. Maybe, he said. The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. Maybe, he said. It can be grueling and I was exposed to a lot of medical trauma during our three plus year investigation and not from the super specialists but from all the gate keepers, all the ruling out docs and their people. I believe Ive had CCI for over 25 years which doctors have refused to image properly. low vitamin D. Try to make sense of that (because I cannot)?! I will never forget the experiences that I have gone through over the last eight years of illness. ME/CFS, fibromyalgia, and long COVID blogs here. Im glad Jen is comparatively well and getting better all the time. It is very frustratingeven devastatingwhen people outside our community do not accept ME/CFS is a real illness. I am glad for Jen Brea but hope it lasts. I am also copper zinc imbalanced. 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. It also did a number on my lower back. Found 20 colleagues at Drexel University. This line holds the long tail of the spinal fluid bag. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. Lets have respect for those who have suffered and not discredit them or what they experienced when they recover. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. For some people it follows a virus, for others it comes on after a car crash or stressful life circumstances; for others its due to mercury poisoning etc. . Many young men were killed. However, not all neurosurgeons will be familiar with them. I have no clue if this surgery makes the neck and spine more flexible or more rigid. I remember her horrific case now. Just wanted to say that the Perrin technique, mentioned above, plus other osteopathic techniques, did nothing to me. Thanks for the comment. Thanks Esther, a blog on Dr. Rowes reports on spinal stenosis is coming up. Oct. 27, 2020, 8:22 p.m. On Thursday, Oct. 15, Stanford's Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and. I found them after PT worsened by double cervical herniated discs, a few years ago. I have not come across a doctor in that time that either understands or knows about CFS so there has not been a diagnosis; usually just shrugged shoulders. All possibilities to heal should be pursued. Surprisingly, I find I sleep best with my legs higher than my head. I could hold my head up again. Almost immediately I began feeling with more energy, clarity of mind and happiness. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. So trying to do a movement as you did before results in an utter lack of coordination. Since valacyclovir those symptoms are not near as severe. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. One person diagnosed with CCI reported on the Phoenix Rising forumsthatmanual traction (having someone pull on ones head while lying down) can help, and prescription drugs have resulted in major improvements. 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). Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. Thanks Nancy. Later, the warriors son was thrown from one of the ponies and broke his leg. That does not mean similar examples such as Breas are not real, but are the exception. It makes me unbalanced as there is so much to relearn and few usable time and energy. Lets instead spread realistic hope that there are answers, varied as they are, to our collective suffering. Regenex is another procedure mentioned. The neck issues or lack of them, at least at times, in this spinal issue are so interesting. The surgery itself is very harsh to the body. Im really happy for her, even ecstatic, but it opened some things up for me. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. Orthopedic Surgery Female Age 44. All we can hope for, is that this research helps future generations. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. There it can help moving blood in the capillaries (as CBF pressure should mechanically speaking help determine amount of blood flow in the brain) and even better help removing debris in the capillaries as oscillating movements often are better at getting stuck debris unstuck. Finding an unusual treatment that works is fairly typical in people who recover. @Kim igG food sensitivities (many, including unexpected ones) Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. Like the PACE Trial; garbage in, garbage out. Jeff, Mike Dessin, and the heavy metal poisoning patient were more similar to Whitney Dafoe than your run of the mill (but still incredibly limited) ME/CFS patient and yet they fully recovered. Hip, on the Phoenix Rising Forums, pointed to five structural conditions which can cause brain stem or spinal cord compression and ME/CFS-like symptoms: Other spinal conditions that could cause or contribute to ME/CFS/FM/POTS include cerebral spinal fluid leaks and intracranial hypertension. Not one doctor of have seen has reported anything. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! Socould my POTs, sleep problems, stomach pain and bloating, and fatigue have been due to a neck injury?? CHIARI-1 MALFORMATION 8mm, rounded morphology (08/07/2008); 5mm, peg-like morphology (08/26/2014), Mild CROWDING OF THE FORAMEN MAGNUM (08/07/2008), DIMINISHED CSF PULSATION IN THE DORSAL ASPECT OF THE FORAMEN MAGNUM (08/07/2008), Mild degenerative changes are present throughout the cervical spine with posterior disk bulges from C2-C3 to the C6-C7. amzn_assoc_marketplace = "amazon"; I would love to know how your consultation went. 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? Has there been any research using Infra red light therapy , it is low cost, non invasive and the target areas are the Gut Microbiota, no medication is required. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. Agreed. Jen I just really hope it works, and not only longterm, but for the rest of your life. The people said it was very lucky. (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available. Our disease is very diverse. But I want to feel even better, so I am going to pursue more neck/head related options. My grand hypothesis is that whatever caused their CCI/AAI is at work in other ME/CFS patients but is manifesting differently.Hopefully we will know at some point. Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. 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. Jennifers) aids recovery because somehow the procedure enables toxins to drain away from the spine and brain? It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. On Phoenix Rising, Jeff reported that the dynamic imaging should also check for Chiari Malformation (which can cause similar issues), craniocervical instability, and tethered cord syndrome (which Health Rising will cover later). Amy, not knowing truly more about your situation, you did not have the correct type of imaging. I am absolutely thrilled to hear such wonderful news! Then, when reading upon Jeffs story I asked my very good physical therapist to teach me some exercises to help stabilize my neck and, as I believed I could better stabilize my neck with a more stable pelvis, to help stabilize my pelvis. I wish you all the best in your continued recovery! One liter of saline x5 week dripped slowly at night took away flu like symptoms. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. I am slowly getting improving, but it has been several years now and I am nowhere near 100% It is very discouraging at times as I used to be a highly active person, Encouraging story, but shes not totally recovered. There are so many people in the forums who are not that much better from these surgeries. These people fought and triumphed. First of all, Im super happy about Jennifer Breas recovery and for new directions for research to go in that this brings about. It really helps pull together all the threads! I benefit enormously from neck traction-like interventions like the neck hammock. Cort, your question is a very good one about is CCI an autoimmune consequence. I had a neck MRI (not with flexing) and a barium swallow with neck x-rays. For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. The rest is speculation. Thank you for all of your work, and for your tireless advocacy efforts. Im about to have my first consultation with one of his associates this week. For the majority of her career, Julia has been committed to public health and advocacy. also people like her with plenty of money can access all treatment s. The top docs are only available to the rich, Im amazed people here cannot see that, the majority suffer and the rich can see any doctor. What really makes me angry though, is that even if you are privileged enough to live in the US, you still need top notch insurance and a huge amount of money for what insurance wont cover. 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. Exactly Issue. I am surprised by how angry I feel, not at Jen, but at the quirks of fate and geography that dictate whether we will receive help or no help at all. The interview includes a particular good discussion of the doctor and the decision to have the surgery. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. Once diagnosed with severe pyroluria I started supplementation and had very quick results. It was only then that even started to look for anything and I still dont think they took me seriously until the antibodies were found in 2017 and I still feel like I am told your symptom severity does not match what we are looking at for this patient population. The problem with doctors is the way they think. She's even a certified medical acupuncturist! I just bought an infrared light machine for my husbands arthritis. He said he didnt have time. The symptoms matched. Next day, the stallion returned, leading a string of fine ponies. I immediately also got a mixed feeling when reading about her recovery. Jen Brea. Jen and Jeffs stories place a new emphasis on the brainstem in ME/CFS. Recovery stories bring up a mix emotions for me, as well. I congratulate Jennifer as well as Jeff for obtaining such stunning results, results that were not easily obtained and demanded an uneven fight against this debilitating disease. I dont know about elsewhere in the world. I will put that in the blog . Thank you so much for this article, and care you have taken. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. High oxidative and nitrosative stress can also damage the brainstem. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. 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. I am increasingly finding it just as frustratingeven maddeningwhen people inside our community refuse to accept that people DO recover from ME/CFS. They think, Plenty of pectus patients do not have ME, so pectus does not play a role in this. I did it because that is how Jen described herself. However, and I state again, she was not an HEDS patient. BTW, there were several miraculous recoveries from brain stenting as well. It has helped a lot with my pain and function, though not a cure. I'm here to answer your questions! I also wonder how many men with ME had suffered a traumatic injury to the back or neck at some point prior to becoming ill? Some people with CCI also benefit from home neck traction devices. Also from SCIG and IVIG when autoimmunity involved. She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. 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. Maybe they thought cfs was related to these outbreaks: https://www.betterhealthguy.com/episode98, I have found the article below very important and relevant to the topic. Two things happen mechanically when pulling onto that tail even a little bit. You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. Unlike Mestinon, it only needs to be taken once or twice a day. The fact remains, that while there are things we can do to make us feel better, ME/CFS remains a disease whose cause and cure is still unknown. Please share your improvement or recovery story (and if Health Rising asks you to respond to a questionnaire on how you improved, please fill it out!). As a result, I learned that even small regular movements of the pelvis, like every single time I do a cycle of diaphragm breathing, is sufficient to give a single tiny boost of rich oxygenated blood lasting one to two seconds to the brains. What is very different about the Ayurvedic training and Western Medical Doctor, is as you alluded to calling a symptom or collection of symptoms a definitive disease. Not sure where to go from here. Shes been in a wheelchair almost her entire time with this disease. Not a cure, but much improvement in brain fog and fatigue & recovery times from over exertion. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. 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. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. Congratulations and thank you for your work !!!! I'm now in full remission. This would explain why some people recover on the vegan diet or by juicing fasts or by mega doses of probiotics or by the grain free, dairy free paleo diet or the leaky gut diet, AIP diet or via the Perrin Technique. That plus certain types of medical marijuana have definitely helped. You deserve it so much more than me. Are a subset of us members of a lost tribe? Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. So I had to learn that component by doing it slowly, observing how it went and how it felt and repeating it. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case. We do not know what exactly causes it nor what sustains it. (Plus, few years I took anticeptive pills for a while, and I got worst, so need to share that too! Directors Jennifer Brea Starring Jennifer Brea, Omar Wasow Genres Dear Cort Using the old trained skill wont help you much and just confuses you. Hey Cort! by Cort Johnson | May 21, 2019 | Brainstem, Craniocervical Instability, Craniocervical Instability, Homepage, Spine | 150 comments, I can hardly believe it myself. Jennifer Brea is an American documentary filmmaker and activist. A huge waste of money. This was a misdiagnosis plain and simple. We know Jen Brea and her husbands story on an intimate level through Unrest. Thanks Cort, but my legs are way above my head when I sleep, not the other way. It requires a keen eye, and the ability to think outside the box. Its not hard to see how someone elses recovery story could trigger some issues. Congratulations again and good luck on your continued recovery:) Your story is really helping move this aspect of ME/CFS forward. I had at some point absolutely no clue how to do it. Ron Davis and to some extent Naviaux believes that in many cases this danger is long gone and hence the hibernation is wrong and should be reset. 2) Your muscles and sense dont operate anymore in the way they used before. There are not so many upright MRIs machines and so many doctors who are not so appraised on diagnosing these conditions, will do a regular supine MRI. You are right though Cort that it raises some difficult emotions. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. She had conjectured, I believe, that she had a hypermobility spectrum disorder as a result of her CCI. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. Likes: Hope4, . More diagnosis/knowledge of this condition may lead to better non surgical treatments. I have been taking 40 mg daily ever since. amzn_assoc_link_id = "YV25CNBNF26YD2J5"; After some reflection, I dont think its as bad as that. I remember I pretty much overnight went from being able to remember and repeat physical movements after one or two demonstrations and having no trouble recalling them days or weeks later, to flat out forgetting them entirely within a few minutes. We will work together . I think CCI is just one way mechanical issues may manifest, but it gives us a clue to the importance of head, neck and spine mechanical issues in ME in general. Medium. The addition of EDS in Jens case restricted to the ligaments involved and MCAS adds more layers that folds her into a huge assemblage of ME/CFS/FM/POTS/EDS/MCAS patients. Angela, I agree with Cort, Nicely said! Sorry, Issie, not Issue. Mattie, a web developer in the Netherlands, had a gradual onset of ME/CFS in 2010 and slowly declined over time. To add to the problem, we dont always know what information is relevant and what is not. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! I dont know if prolotherapy is an option for treating CCI/AAI, but it is used to treat ligament laxity which is found in CCI/AAI and a number of neck and spine issues. If theres x amount more symptoms its eds. I wonder if a move is in store? Not knowing the problem at hand might be even more complex then anticipated doesnt magically makes the problem easier to solve. off of the brainstem. All things that are treatable, should be treated. Carol. She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. Moderate to severe ME equals to severe to devastatingly severe illness IMO. Both were after all atypical CCI/AAI patients. Cort, I dont think Jennifer was ever an EDS patient. I can work now. Who is the agent for Jennifer Brea? Jeff and Jen Brea are leading examples. 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. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. I appreciated your your emphasis on the importance of staying curious, given the wide variety of ways out of illness that some people are finding. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? Brain scans provide the final determination. Upright scans are harder to find and are not necessary if good MRI machines are available.. 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. 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. I love that she went VERY QUIET when she realised it was not in fact ME/CFS but the CCI thing. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. This is such an obstacle that it almost makes me wish Id never heard of CCI! I am happy for Jeff and Jan! Thanks Cort, for reporting on this and other stories of recovery. This is one of the problems with ME/CFS is that it is a truly a diagnosis of exclusion. * I should note I am not sure Ramsey himself described ME as an atypical poliomyelitis (believe Dowsett did and Hyde definitely did), perhaps someone if reading this can confirm, but he did call it was an illness triggered by a virus. She didnt have ME and i found her film attention seeking. Jens CCI surgery could be just another coincidence. From someone on the Cusack protocol FB group: Hypermobility disorder is diagnosed when the symptoms are primarily joint related. The surgery with a well respected neurosurgeon who does many of these surgeries helped with pain and some symptoms but did not help with CFS-ME. As long as we dont know what causes and sustains our disease we cant say she never had our disease. 1981 - Jennifer Tisdale, American actress and singer; 1981 - Kristaps Valters, Latvian basketball player . Slowly, I moved from very severe, to severe, to moderate on the spectrum. I can only hope that your energy and health remain and your charisma remains with the cause. Hi Cort, my head is LOWER than my feet in my bed. Theres so much education that is needed on so many different fronts. How about tho an enteroviral attack that weakened those ligaments? nw. Also EDS tissue can have a tendency to stretch and droop out of position. Hi R, did you mean that surgery to correct CCI/AAI did not cure your daughter of ME/CFS? By 2012, I progressively lost the ability to read, think, or walk. Doctors are still in the mode of one-cause-one-disease. I havent read the comments above, it occurs to me that Jen would have failed the nano-needle (Ron Davis)/intracellular phenylalanine (Karl Morten)/mitochondrial fragmentation (Bupresh Prusty) tests. Thanks to one neurosurgeon who watched my TED Talk and film, an amazing internist, and an intrepid patient, I found my way to a second surgeon and a diagnosis of craniocervical instability and tethered cord syndrome. 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. She saw a world renown surgeon and we are very happy with the surgery. Its just that I hoped for something making this disease easier to understand and treat rather then even more diverse and complex to comprehend. All it took was a series of spinal surgeries done over several weeks about six months ago. A halo or cervical brace is worn while the bones completely fuse together. kirkleatham crematorium funerals this week, does toby jones have a syndrome, how often to apply flea treatment to dogs, inglewood shooting 2020, university of northern colorado hockey roster, trevor duncan taylor waterford mi, water dogs bait for sale in az, pickettywitch where are they now, hillary clinton height, newton county, missouri elections 2021, watford general hospital ophthalmology consultants, tell the truth and run proverb, michael joseph marino, lynn borden cause of death, dennis eckersley salary nesn,
Lolo Wood Before And After, Why Did Steven Hill Leave Mission: Impossible, Pngjobseek Current Vacancies 2022, Tierra Fuller Husband, Peter Pettigrew Middle Name, Hallelujah By Garth Brooks, Doctors In Mississauga Accepting New Patients, Slick Em Hound Net Worth,
jennifer brea neurosurgeon