It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. The need to get the news out to make sure that everyone benefits is one reason we need strong advocacy networks everywhere now. Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284, https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome, https://www.mechanicalbasis.org/interviews.html, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/, via the dysregulation of immune signals traveling from the vagus nerve to the brain, via activation of the many mast cells found in it, via problems with its regulation of the autonomic nervous system. I am also copper zinc imbalanced. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. Notify me via e-mail if anyone answers my comment. 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. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogrens Syndrome. 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. I had a urine count of 27.5 so I was severe. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. I was a responder to these drugs and (and to mold avoidance). It really helps pull together all the threads! 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. Truly is a diagnosis of exclusion. Each time I diaphragm breath or do a bigger movement with my pelvis, the curvature of my back changes. (08/07/2008). She knew her PEM was gone immediately after the CCI/AAI surgery. 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. It requires a keen eye, and the ability to think outside the box. She said it can also cause countless symptoms, when I saw the. Jen Brea. But people should have support and pace through these studies and surgeries. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. 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. I wanted some sort of cervical traction because my head felt too heavy. Cort, I dont think Jennifer was ever an EDS patient. I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). I also use Lipid Replacement Therapy using an organic sunflower lecithin powder. But Im leery of these fixes. 2) Your muscles and sense dont operate anymore in the way they used before. We will work together . You are right though Cort that it raises some difficult emotions. I feel no love lost for her as she did nothing in Australia but promote herself and her film with no real support to the 250,000 sufferers DownUnder. 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. So my personality, hopes and ability to enjoy life has decreased dramatically. Im just reading his book and had a eureka moment. We do not know what exactly causes it nor what sustains it. This is another interesting bit of research that . Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. 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. I am a research Scientist that have had one success, of treating a person who had been ill with ME/CFS , Fibromyalgia , Depression, and associated sleep without feeling refreshed, since 1990s. At least now, she is out of her pain. Finding an unusual treatment that works is fairly typical in people who recover. So I learned to go back to the basics each time that happened. She saw a world renown surgeon and we are very happy with the surgery. Surgery was the only option for Jeff and Jen, but its not for everyone. I tried so hard to get help and they didnt seem to care. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. It all comes to late. Ask me anything! multi- and mold-susceptible genes It could be *part* of ME and for some a dominant part. Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. Medium. One liter of saline x5 week dripped slowly at night took away flu like symptoms. My mast cell activation syndrome (MCAS) has improved significantly, too. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. One thing that you didnt mention is that chiari and CCI are not all that uncommon in people with Ehlers-Danlos Syndromethough not especially common either. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. It did worsen my instability, which is how I got diagnosed and treated. Career Unrest . Maybe, the warrior said. Basically its do-it-yourself re-validation therapy like someone with brain injury would receive. I know how you feel its hard not to feel that way after awhile but check this out Dana we didnt know anything about CCI/AAI a year and now Jen Brea is recovering. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. She's even a certified medical acupuncturist! Many cfs suffers like her, seams recovered but actually more problems are waiting! After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. If anyone is curious, there's a new short documentary series following people with "chronic illness".I thought it would feature people with real Press J to jump to the feed. 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. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. Wife of @owasow. 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. Good luck and keep the hope up . Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. I send you love and every wish that you will get help soon. That plus certain types of medical marijuana have definitely helped. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. The next week, the chief led a war party against another tribe. Im luckily rather immune to that. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. Terri Wilder, M.S.W. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. 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. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. Rheumatoid arthritis is a main cause of CCI. 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. The exray shows major arthritis from the first accident many yrs prior. I think that is important and I want folks to understand that I perceived my symptoms as systemic (which obviously they weremy brainstem was compromised!) But i am very happy for her . In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a rigid posture and tense muscles wasting energy and more IMO. Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. And I am talking about my daughter who improved from CCI surgery but it did not cure her. Since valacyclovir those symptoms are not near as severe. long story version coming soon. The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. Jeff and Jen Brea are leading examples. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. While she was pursuing her PhD at Harvard, she fell ill and was . I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. High oxidative and nitrosative stress can also damage the brainstem. In that same view, if both my keen senses and my PT and my views on how things connect to each other are correct and play an important role in the brain blood flow and waste removal, having such spinal problem solved would touch to (part of) the core of ME disease. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. 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 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. He has an 85% success rate. antibodies for c. pneumoniae and epstein barr EDS does run in his family. Next day, the stallion returned, leading a string of fine ponies. I have a mild chiari that is not obstructing flow but what happens when I have inflammation? As long as we dont know what causes and sustains our disease we cant say she never had our disease. Thanks for the comment. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. To his surprise, he met the criteria. If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.. via a stunting of the anti-inflammatory response. Hope the ideas may help you in your recovery. Jeff just interviewed someone who recently had the surgery. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. Each episode of CFS would start out with cold sores, sore throat, severe fatigue, sleep disruption, achy joints and muscles, etc. low testosterone (possible sign of infection?) However, these policies are limited to in-network providers and facilities. Im in awe of what both of you have achieved. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. The Spinal Series Pt. If so, might I ask who performed her surgery? 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. Then, in 2018, after surgery for thyroid cancer, I developed central apnea that caused me to stop breathing every time I turned my head or laid on my back, whether I was asleep or awake. To his surprise he met the criteria. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. Thats one of the startling things about this condition. Havent figured out the solution to that one yet, though Alexander Technique helps somewhat. Check it out here: https://www.mechanicalbasis.org/interviews.html. amzn_assoc_default_search_category = "";
We hear stories about how there have been no reports of adverse effects of x, y, or z but then you look and there are lots of anecdotal reports. Dr. Jennifer Brey, MD. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. Its going to be interesting figuring this all out! 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. Jane Colby of UK ME childrens charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsetts work (Bryon Hydes too) and that the infecting viruses in ME could be identified, given the will There was no will and they didnt want to know. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. Almost every body part is affected. This is not an example of remission or a recovery from ME/CFS. It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. 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 has also caused to wonder about my own possible CCI. For the majority of her career, Julia has been committed to public health and advocacy. By 2012, I progressively lost the ability to read, think, or walk. Im really happy for her, even ecstatic, but it opened some things up for me. Later on its harder to find them as they hide away in tissues eg brain. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Narrower spinal column? Im pretty sure my ME has a biomechanical cause. . Pyroluria Real Disorder or Figment? Maybe, he said. Are a subset of us members of a lost tribe? For me, toxin buildup in the central nervous system certainly makes sense. So is the muscle twitching, the air hunger, the restless legs, the brain fog, the short-term memory issues and the flu-like symptoms, For the first time in eight years, shes walking for exercise and, well, for the thrill and joy of walking. I thought about this during the movie. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. 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. 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 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. Why you should listen. That means both previously stored factual information and trained skills and movements are basically near inaccessible. Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. If all it took to cure it was a spinal surgery, wed all be jumping up and down with joy. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . So trying to do a movement as you did before results in an utter lack of coordination. This whole bloody process has shown me how much medicine is just belief. Angela, I agree with Cort, Nicely said! Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. and am even sobedridden I could not go to see a specialist or getting at a hospital. One of the key side effects, apparently, of diphenhydramine is sleepiness. That kinda bites. 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. What an unbelievable relief that must be. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) Her spine is still healing, but it seems its just a matter of time before Jen Breas ME/CFS is totally gone. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. Theyre probably a lot easier to get a hold of than a neurosurgeon. 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). In the aftermath, she rediscovered her first love, film. When I initially became ill, I had a lot of testing done. She had put off having this surgery until after the promotion from "Unrest" was over. Such waves travel to the entire jelly brain structure. BUT, I cannot exercise in any meaningful way (although walking is generally OK). @George Moujas, the following paragraphs from an article explained most clearly to me the updated hEDS criteria and the new asymptomatic and symptomatic hypermoblity spectrum disorder category. I know few of the above. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. 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. 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. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. I am reminded of the damage that was caused in 2009 when after huge publicity was given to the retrovirus XMRV as the definitive cause of MEFS, many could not admit their mistake even after the retraction in the journal Science. With all of us working together who knows what will happen? Jen Brea, Steps per day Jen Brea before and after surgery (see blue line) (From https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/). It was 2017. 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. Having your senses reporting different information about speed and position makes it worse. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. You never know! I was recently diagnosed with Pyroluria. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. Unlike Mestinon, it only needs to be taken once or twice a day. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. why would treating the CCI heal all symptoms, surely some illness would still be remaining?. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. She started filming herself and the community that she discovered online, collecting the first footage of what . Thanks Cort, but my legs are way above my head when I sleep, not the other way. Amy, not knowing truly more about your situation, you did not have the correct type of imaging. The problem is not someone becoming well but the shadow that recovery casts on our current situation. Thanks for the informative article, Cort! He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. She was playing to be seen to do the right thing but in fact didnt. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. 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. Or an enteroviral attack which sparked an immune response which attacked those ligaments? It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. July 3, 2020. Hi! Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case.
jennifer brea neurosurgeon
It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. The need to get the news out to make sure that everyone benefits is one reason we need strong advocacy networks everywhere now. Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284, https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome, https://www.mechanicalbasis.org/interviews.html, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/, via the dysregulation of immune signals traveling from the vagus nerve to the brain, via activation of the many mast cells found in it, via problems with its regulation of the autonomic nervous system. I am also copper zinc imbalanced. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. Notify me via e-mail if anyone answers my comment. 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. Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogrens Syndrome. 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. I had a urine count of 27.5 so I was severe. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. I was a responder to these drugs and (and to mold avoidance). It really helps pull together all the threads! 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. Truly is a diagnosis of exclusion. Each time I diaphragm breath or do a bigger movement with my pelvis, the curvature of my back changes. (08/07/2008). She knew her PEM was gone immediately after the CCI/AAI surgery. 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. It requires a keen eye, and the ability to think outside the box. She said it can also cause countless symptoms, when I saw the. Jen Brea. But people should have support and pace through these studies and surgeries. (Recently Ive come to view my own condition as more of a cascading, self-perpetuating cycle, rather than a linear cascade. 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. I wanted some sort of cervical traction because my head felt too heavy. Cort, I dont think Jennifer was ever an EDS patient. I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). I also use Lipid Replacement Therapy using an organic sunflower lecithin powder. But Im leery of these fixes. 2) Your muscles and sense dont operate anymore in the way they used before. We will work together . You are right though Cort that it raises some difficult emotions. I feel no love lost for her as she did nothing in Australia but promote herself and her film with no real support to the 250,000 sufferers DownUnder. 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. So my personality, hopes and ability to enjoy life has decreased dramatically. Im just reading his book and had a eureka moment. We do not know what exactly causes it nor what sustains it. This is another interesting bit of research that . Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. 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. I am a research Scientist that have had one success, of treating a person who had been ill with ME/CFS , Fibromyalgia , Depression, and associated sleep without feeling refreshed, since 1990s. At least now, she is out of her pain. Finding an unusual treatment that works is fairly typical in people who recover. So I learned to go back to the basics each time that happened. She saw a world renown surgeon and we are very happy with the surgery. Surgery was the only option for Jeff and Jen, but its not for everyone. I tried so hard to get help and they didnt seem to care. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. It all comes to late. Ask me anything! multi- and mold-susceptible genes It could be *part* of ME and for some a dominant part. Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. Medium. One liter of saline x5 week dripped slowly at night took away flu like symptoms. My mast cell activation syndrome (MCAS) has improved significantly, too. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. One thing that you didnt mention is that chiari and CCI are not all that uncommon in people with Ehlers-Danlos Syndromethough not especially common either. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. It did worsen my instability, which is how I got diagnosed and treated. Career Unrest . Maybe, the warrior said. Basically its do-it-yourself re-validation therapy like someone with brain injury would receive. I know how you feel its hard not to feel that way after awhile but check this out Dana we didnt know anything about CCI/AAI a year and now Jen Brea is recovering. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. She's even a certified medical acupuncturist! Many cfs suffers like her, seams recovered but actually more problems are waiting! After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. If anyone is curious, there's a new short documentary series following people with "chronic illness".I thought it would feature people with real Press J to jump to the feed. 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. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. Wife of @owasow. 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. Good luck and keep the hope up . Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. I send you love and every wish that you will get help soon. That plus certain types of medical marijuana have definitely helped. One day, she spiked a 104-degree fever and, after 10 days of dizziness, sweats, chills, and soreness, she "stopped being able to speak or think," she says. The next week, the chief led a war party against another tribe. Im luckily rather immune to that. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. Terri Wilder, M.S.W. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. 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. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. Rheumatoid arthritis is a main cause of CCI. 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. The exray shows major arthritis from the first accident many yrs prior. I think that is important and I want folks to understand that I perceived my symptoms as systemic (which obviously they weremy brainstem was compromised!) But i am very happy for her . In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a rigid posture and tense muscles wasting energy and more IMO. Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. And I am talking about my daughter who improved from CCI surgery but it did not cure her. Since valacyclovir those symptoms are not near as severe. long story version coming soon. The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. Jeff and Jen Brea are leading examples. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. While she was pursuing her PhD at Harvard, she fell ill and was . I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. High oxidative and nitrosative stress can also damage the brainstem. In that same view, if both my keen senses and my PT and my views on how things connect to each other are correct and play an important role in the brain blood flow and waste removal, having such spinal problem solved would touch to (part of) the core of ME disease. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. 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 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. He has an 85% success rate. antibodies for c. pneumoniae and epstein barr EDS does run in his family. Next day, the stallion returned, leading a string of fine ponies. I have a mild chiari that is not obstructing flow but what happens when I have inflammation? As long as we dont know what causes and sustains our disease we cant say she never had our disease. Thanks for the comment. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. To his surprise, he met the criteria. If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.. via a stunting of the anti-inflammatory response. Hope the ideas may help you in your recovery. Jeff just interviewed someone who recently had the surgery. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. Each episode of CFS would start out with cold sores, sore throat, severe fatigue, sleep disruption, achy joints and muscles, etc. low testosterone (possible sign of infection?) However, these policies are limited to in-network providers and facilities. Im in awe of what both of you have achieved. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. The Spinal Series Pt. If so, might I ask who performed her surgery? 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. Then, in 2018, after surgery for thyroid cancer, I developed central apnea that caused me to stop breathing every time I turned my head or laid on my back, whether I was asleep or awake. To his surprise he met the criteria. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. Thats one of the startling things about this condition. Havent figured out the solution to that one yet, though Alexander Technique helps somewhat. Check it out here: https://www.mechanicalbasis.org/interviews.html. amzn_assoc_default_search_category = ""; We hear stories about how there have been no reports of adverse effects of x, y, or z but then you look and there are lots of anecdotal reports. Dr. Jennifer Brey, MD. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. Its going to be interesting figuring this all out! 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. Jane Colby of UK ME childrens charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsetts work (Bryon Hydes too) and that the infecting viruses in ME could be identified, given the will There was no will and they didnt want to know. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. Almost every body part is affected. This is not an example of remission or a recovery from ME/CFS. It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. 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 has also caused to wonder about my own possible CCI. For the majority of her career, Julia has been committed to public health and advocacy. By 2012, I progressively lost the ability to read, think, or walk. Im really happy for her, even ecstatic, but it opened some things up for me. Later on its harder to find them as they hide away in tissues eg brain. Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. Narrower spinal column? Im pretty sure my ME has a biomechanical cause. . Pyroluria Real Disorder or Figment? Maybe, he said. Are a subset of us members of a lost tribe? For me, toxin buildup in the central nervous system certainly makes sense. So is the muscle twitching, the air hunger, the restless legs, the brain fog, the short-term memory issues and the flu-like symptoms, For the first time in eight years, shes walking for exercise and, well, for the thrill and joy of walking. I thought about this during the movie. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. 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. 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 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. Why you should listen. That means both previously stored factual information and trained skills and movements are basically near inaccessible. Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. If all it took to cure it was a spinal surgery, wed all be jumping up and down with joy. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . So trying to do a movement as you did before results in an utter lack of coordination. This whole bloody process has shown me how much medicine is just belief. Angela, I agree with Cort, Nicely said! Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. and am even sobedridden I could not go to see a specialist or getting at a hospital. One of the key side effects, apparently, of diphenhydramine is sleepiness. That kinda bites. 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. What an unbelievable relief that must be. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) Her spine is still healing, but it seems its just a matter of time before Jen Breas ME/CFS is totally gone. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. Theyre probably a lot easier to get a hold of than a neurosurgeon. 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). In the aftermath, she rediscovered her first love, film. When I initially became ill, I had a lot of testing done. She had put off having this surgery until after the promotion from "Unrest" was over. Such waves travel to the entire jelly brain structure. BUT, I cannot exercise in any meaningful way (although walking is generally OK). @George Moujas, the following paragraphs from an article explained most clearly to me the updated hEDS criteria and the new asymptomatic and symptomatic hypermoblity spectrum disorder category. I know few of the above. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. 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. 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. Given the extreme disability sometimes found in ME/CFS, its possible that two of the crucial brain organs involved in movement the motor cortex and the brainstem may have both taken a hit. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. I am reminded of the damage that was caused in 2009 when after huge publicity was given to the retrovirus XMRV as the definitive cause of MEFS, many could not admit their mistake even after the retraction in the journal Science. With all of us working together who knows what will happen? Jen Brea, Steps per day Jen Brea before and after surgery (see blue line) (From https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/). It was 2017. 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. Having your senses reporting different information about speed and position makes it worse. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. You never know! I was recently diagnosed with Pyroluria. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. Unlike Mestinon, it only needs to be taken once or twice a day. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. why would treating the CCI heal all symptoms, surely some illness would still be remaining?. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. She started filming herself and the community that she discovered online, collecting the first footage of what . Thanks Cort, but my legs are way above my head when I sleep, not the other way. Amy, not knowing truly more about your situation, you did not have the correct type of imaging. The problem is not someone becoming well but the shadow that recovery casts on our current situation. Thanks for the informative article, Cort! He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. She was playing to be seen to do the right thing but in fact didnt. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. 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. Or an enteroviral attack which sparked an immune response which attacked those ligaments? It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. July 3, 2020. Hi! Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case.
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