I send you love and every wish that you will get help soon. High oxidative and nitrosative stress can also damage the brainstem. And yet, when Brea was 28 years old, a Ph.D student at Harvard with a future as bright as her smile, she was struck suddenly by a fever of nearly 105 degrees. 2) Why is there such a prevalence of women in the ME patient population? Thanks for the comment. Check out the difference between the3T and 1.5T machines). 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. 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. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. Over the following months, while doctors insisted her condition was psychosomatic, Brea became bedridden. I am increasingly finding it just as frustratingeven maddeningwhen people inside our community refuse to accept that people DO recover from ME/CFS. But people should have support and pace through these studies and surgeries. I have a mild chiari that is not obstructing flow but what happens when I have inflammation? I think the question of just what exactly is ME/CFS is going to come up more and more. 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 . His tour was at least factually backed and supported by many state and national advocates with whom he worked plus ME/CFS Australia Ltd who provided him with a thorough briefing on the situation here and key influencers.. Yes we more than ever need a good diagnostic test think, though, about how much controversy THAT will raise when some people with clear ME/cFS symptoms, onset and other tests, dont test positive which Im sure will happen! Next day, the stallion returned, leading a string of fine ponies. Unless, of course, it works! I built new model of ME/CFS through my own research. My uncle once told me about a warrior who had a fine stallion. Different neurosurgeons will employ different scans. She recently did an hour of water aerobics. Jeff will interview Mattie again in a couple of months. 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. I wouldnt go that far but I combined her thoughts with my keen senses and got to this: When moving my pelvis in a way that changes my back curvature from hollow to the opposite and back, I sense my head feels different. Note that physical discomfort in head/neck area is not required! Im still waiting This line holds the long tail of the spinal fluid bag. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. the toxins) in the lymph system reducing the hypothalamus function. She was in Miami dealing with another project while coordinating and gazing in the film Unrest. Jennifer Brea Wiki, Biography, Age as Wikipedia. Be sure to check out Jeffs recommendations on his website. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). 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. Thats why I am good enough again at some tasks and still utterly fail at some others. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. Dr Perrins therapy is a specific type of massage The Perrin Technique which helps to drain toxins from the spine and brain. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. The ceremony is to be led by Henry Louis Gates Jr . BTW, there were several miraculous recoveries from brain stenting as well. Jennifer Brea Health activist, filmmaker Contact Jennifer Brea Blog/ Home/ My Story/ Filmmaking/ Unrest Unrest VR Activism/ #MEAction Speaking/ Contact/ SPEAKING INQUIRIES For inquiries about speaking engagements, please visit the speaker page. I have been taking 40 mg daily ever since. Dr. Nigel Speight, is one . I was told I had anterior osteophytes on my cervical spine along with arthritis. Quite a few cant tolerate it or it doesnt help. He thought probably various viruses were responsible. and not as referrable to any specific part of my anatomy for the vast majority of my illness. It could also explain why a certain type of back surgery (i.e. The interview includes a particularly good discussion of the doctor and the decision to have the surgery. So I learned to go back to the basics each time that happened. And I am talking about my daughter who improved from CCI surgery but it did not cure her. .adding to the above.. i know this only pertains to some of us. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. . If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Sadly, no matter the current confusion out there, MECFS remains a diagnosis of exclusion. It has also caused to wonder about my own possible CCI. It was all about money and about her and her film production career. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. After spending over $200K on more traditional treatments, mold avoidance did it for Joey. Jeff and Jen Brea are leading examples. Such waves travel to the entire jelly brain structure. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. Not a cure, but much improvement in brain fog and fatigue & recovery times from over exertion. If he didnt write it up, how many others didnt either? Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. Everything felt to me to be systemic. She said it can also cause countless symptoms, when I saw the. Whatever kind of CCI/AAI she had, it was different from what hed seen before. I have had CFS symptoms several times a year lasting from 10 days to over 6 months. For example, walking around a table requires to be able to stand still and turn the outermost feet inward without lifting it or losing balance. Often the drooping brain stem will not be apparent unless a patient is upright. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. ), Your email address will not be published. Yet it did. The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. 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. Jeff and Jens stories do bring a new focus to the spine and brainstem. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. Each episode of CFS would start out with cold sores, sore throat, severe fatigue, sleep disruption, achy joints and muscles, etc. Notify me via e-mail if anyone answers my comment. 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. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. That procedure sounds about as spine-tinglingly scary as anything I can imagine. If you have ME and are contemplating such surgery you should be extremely circumspect and examine the evidence with great care. Hi Ruth 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!! Your email address will not be published. Wait times to get the surgery done can obviously be long. 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. my head goes clean through the rear window of the truck and im knocked out. * There is a small but enduring cycle of spinal fluid being moved from the bag to the tail and vice versa. amzn_assoc_tracking_id = "patientrising-20"; 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. Good luck and keep the hope up . I also sense something similar with chest breathing but to a far smaller extend so its vague. I wanted some sort of cervical traction because my head felt too heavy. is there one in belgium you know? Yes. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. Our goal has to be to assist the medical system in its evolution, to keep the hope alive, to keep sharing, to have the courage to keep knocking on closed doors, and eventually getting the light to shine through. Jeffs publication of his story may have saved Jens life. 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. Im so happy for Jen and excited to see where she lands. I cant even find the words to let you know how thrilled I am for you! Just talk to others of us. Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting Prolotherapy involves injecting an irritating glucose/dextrose or other solution at painful ligament attachment sites to produce a mild inflammatory response which, hopefully, initiates a healing cascade which then increases the strength and elasticity of connective tissues. 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. 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. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? So weve got a small spinal fluid pump / mixer which may be a good thing. She was playing to be seen to do the right thing but in fact didnt. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. I would put anyone whos in a wheelchair as having a severe illness however. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. So, its a matter of reducing the amount of nickel. (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available. 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. People too often tout X as the recovery method when the recovery may well have been just a coincidence; you never know unless you do controlled trial. Also from SCIG and IVIG when autoimmunity involved. I have the same issue actually AFA will only pay for local providers. Jennifer Brea 2.8K Followers Maker of @unrestfilm. One of the key side effects, apparently, of diphenhydramine is sleepiness. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. Traction is very dangerous in CCI. 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. The common thread between the two is choline, the precursor to the neurotransmitter, acetylcholine, which appears to be low and/or impaired in people with ME CFS. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. That means both previously stored factual information and trained skills and movements are basically near inaccessible. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. Medicine, as Jen Brea noted in her recent blog, is ever-evolving. Would you share the Hyperzine product thats working for you? . During the surgery, her neck was hyperextended to intubate her. Brea, Jennifer (May 20, 2019). Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. Can you make a correction to your article? Two methods can provide an indication that CCI/AAI might be present. 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. 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. Could I use it for my chronic fatigue? 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