amzn_assoc_bg_color = "FFFFFF"; The information found on Health Rising is mostly put together by people with ME/CFS and/or FM. I believe two things are at work here: She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). Congratulations and thank you for your work !!!! Such waves travel to the entire jelly brain structure. Finding an unusual treatment that works is fairly typical in people who recover. Saying that a viral onset causes this disease it too short of an explanation. All things that are treatable, should be treated. Among the first thoughts I had upon learning of Jens recovery was that if this is what it takes a rare diagnosis and neurosurgery if thats what it really takes to recover, I dont know that thats ever going to happen. That kinda bites. Its not hard to see how someone elses recovery story could trigger some issues. In the end, my dream is that all of the suffering caused by this disease and the large effort needed to combat it will increase understanding of this disease as a series of mechanisms, learn how to differentiate between symptoms that drive this disease and symptoms that are the result of fighting this disease and result in a sort of extensive diagnostics and treatment plan that gets to the root of our health issues. Socould my POTs, sleep problems, stomach pain and bloating, and fatigue have been due to a neck injury?? youve forgotten them or they are lost to you. Speaking of that I emailed Avindra Nath Jeffs story and today your story and asked him if he was looking at this in the NIH Intramural study and I gathered from his answer that he is. The Recovery/Recovering Stories section of Health Rising often triggers differing emotions some people love them, others hate them. amzn_assoc_link_id = "YV25CNBNF26YD2J5"; You dont have to have the energy for breakthroughs to happen. 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. Would you share the Hyperzine product thats working for you? . Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. I am so happy for Jen Brea and I hope that she extracts every ounce of joy out of her newfound health and second chance at life. 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. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. Brain cells in hibernation dont process information at the same speed and strength. Nor could I ever feel any envy. I wanted some sort of cervical traction because my head felt too heavy. Unlike Mestinon, it only needs to be taken once or twice a day. I cant sleep (for years). Barnden proposed problems in the brainstem could be inhibiting the flow of signals from the motor cortex in the brain to the muscles. 4.9 (9 ratings) Required fields are marked *. @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. So I learned to go back to the basics each time that happened. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. Sheeze wish Jen Brea would stop messing with ME. The fact that the damage correlated with autonomic nervous system problems suggested brainstem problems could be affecting exercise, sleep, the gut and cognition. Jeff will interview Mattie again in a couple of months. I always chalked it up to POTS and Im an expert at dealing with weird shit going on in my body anyway. 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. If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. If he didnt write it up, how many others didnt either? 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). We will work together . Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. Other people can take of that. I am hopeful that someone will figure this disease out but realistically I dont think it will be in my lifetime. So what if our bodies were not in hibernation but rather in something I would call pro-active hibernation? She even changed the color of Royal Blue to Red , Red is HIV Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting I had something similar. I wonder if anyone looked at the thyroid tissue for viruses. I couldnt find any information on that so maybe it doesnt. It is a cholinesterase inhibitor like Mestinon, available over the counter. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. 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. It wasnt my answer. Now that I am walking down this pathway myself, Im experiencing some very contrary feelings, as you discuss. And whether if you have cervical spinal stenosis, are you more likely to have CCI and other instability issues? Around 2000, a group of Fibro and CFS patients, including myself, were diagnose with Arnold Chiari Malformation. We can not help but be happy for Jennifer Brea but many are now Its just that I hoped for something making this disease easier to understand and treat rather then even more diverse and complex to comprehend. 9 They (hers & others) can distract us from the underlying cause of this devastating illness so many of us have. Theres no doubt this is not the easy way out for ME/CFS. For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. Is that possible? document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Subscribe To Health Risings Free Chronic Fatigue Syndrome and Fibromyalgia Information, HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT. Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case. FIND SUPPORT Are you patient look for social support or wondering how to get diagnosed? That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. After 10 years of search for advice I eventually managed to get a scan, and it showed I had a very severe case with heart and liver compression. I believe now that the arthritis in my neck is stopping or slowing down the flow of toxins that get drained from the head..i have constant sinus infections etc. I was bedridden and wanted to find a solution. Jen Brea. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. 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. Sorry for the delay I changed this: Jeff reported that, for most of his ME/CFS, his vague headaches and neck symptoms provided no clues that his head and neck. the original CFS. However, I am grateful to at least been able to pursue these different medical tests in a quest for answers. EDS type 3 is one presentation of MCAD and my daughter has Hereditary Alpha Tryptasemia (as per NIH) and MCAS as per qualifying for activation by strictest diagnostic criteria. I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care. Im really happy for her, even ecstatic, but it opened some things up for me. 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. It makes sense as those are computational far far less complex to do. the toxins) in the lymph system reducing the hypothalamus function. 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? For example, I found out that I have: sickle cell trait My suspicion is that its such a small dose (at 10mg twice per day am and pm) that any sleepiness is negligible. One of the key side effects, apparently, of diphenhydramine is sleepiness. Using the old trained skill wont help you much and just confuses you. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. 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. amzn_assoc_marketplace = "amazon"; I will never forget the experiences that I have gone through over the last eight years of illness. Jen I just really hope it works, and not only longterm, but for the rest of your life. Dr. Petra Klinge, a pediatric neurosurgeon who specializes in tethered cord syndrome, has proposed that a underlying tethered cord might be a risk factor for developing . There are still the vagal sympathetic synptoms and the neck pain. Previously, she was a freelance journalist in China and East and Southern Africa. She started filming herself and the community that she discovered online, collecting the first footage of what . I get taken by ambulance to hospital and the doc says take some tylenol..you will be finethe cop that came into the room with me says to the lady doclady..his head went through the window..he needs an xray..yes the cop says this! Most neurosurgeons arent trained to recognize craniocervical instability, and finding an imaging facility that does the right kind of scans can take time. I do ice my head and neck almost everyday. amzn_assoc_tracking_id = "patientrising-20"; She was traveling all around the world giving talks & lectures, going out for meals, consecutive days, & always looked vibrant & well, with an incredible upright strong posture, obviously no brain fog or PEM etc etc was puzzling to me? Not sure where to go from here. Thanks Cort, for reporting on this and other stories of recovery. Many of us have the syndrome. Im pretty sure my ME has a biomechanical cause. 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 line holds the long tail of the spinal fluid bag. 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. The first surgery was done by the doc in NY and they tried to repair it in UK afterwards, according to one of her relatives email to me. Jennifer Brea Wiki, Biography, Age as Wikipedia. Jennifer Brea is an independent filmmaker based in Los Angeles. Our highly specialized spine surgery program offers comprehensive and complex spinal care using the most advanced techniques, and the latest state-of-the-art technology. So, its a matter of reducing the amount of nickel. 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. We are lucky shes still alive. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. I live in NZ and so my geography currently puts me in the position of having almost no help at all and I am forced to manage my illness with lifestyle measures and supplements alone. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. When I try to support the body in resolving the problem I believe to perceive I often get a modest amount of improvement. I agree- its very important! https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogrens Syndrome. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. I felt uneasy writing moderate as well. July 3, 2020. But I see no future for me anymore, getting rapidly worse and am alreaddy 99% bedridden. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. June 1st will mark one year since my full recovery. nw. BUT, three months ago i started an anti-inflammatory diet (no sugar, no gluten, few carbs) that just changed the game. When given the chance, the body can come back from an amazingly debilitated state. I would dearly love to get my hands on Mestinon and my mind boggles at the testing regimes and treatments that some patients are offered in the US (as they rightly deserve). hEDS and hypermobility were often interchangeable until the recent criteria establishment. When I initially became ill, I had a lot of testing done. Then, this highly-seasoned neurosurgeon finally did the work that every other doctor had refused to do: He took a genuine interest in my symptoms, and he ordered a correct form of dynamic imaging required to assess for CCI/AAI - a dynamic CT scan with flexion and extension views. During the surgery, her neck was hyperextended to intubate her. Both were after all atypical CCI/AAI patients. They have a specific focus on the neck. Narrower spinal column? These are not symptoms that are easy to fake.. Since valacyclovir those symptoms are not near as severe. Go figure. After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. 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. Fast forward to aprox. Many cfs suffers like her, seams recovered but actually more problems are waiting! 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. Jennifer Brea is an independent filmmaker based in Los Angeles. My daughters illness started with swollen lymph nodes, mouth and nose ulcers, extreme fatigue, low grade fevers, muscle and joint pain, exercise intolerance, POTS. * 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. 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. This is why Im curious if Jens MCAS or mast cell activation came on as a result of environmental trigger (mold) or has a genetic origin. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. It is clear that there is no single cause and we need to learn whatever we can from individual cases that may be of help to various subsets of patients, whose lives have been blighted by this dreadful illness. Jennifer Brea is a filmmaker and activist. I dont know if you saw my post above about having an incurable condition called interstitial cystitis. Besides all her ME symptoms, she was having trouble breathing, had flaccid limbs, numb, painful and weak legs, and was experiencing difficulty speaking and thinking. It was a long road, but I am cured. Recovery stories bring up a mix emotions for me, as well. Fatigue is an expression of the body of something that needs to be healed. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. Gentle hugs. Its one of those you dont want to miss this diagnosis that is drilled into our specialty training. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. You never know! She can bend her hand flat on her arm. Once the toxins are cleared, the hypothalamus functions normally again and the CFS/ME disappears. Jeff will interview Mattie again in a couple of months. Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). Traction is very dangerous in CCI. I was told by a Woman last night to look into a condition called Systemic Nickel Allergy Syndrome I was very surprised she said this to me, a Doctor a few years back told me I was Allergic to Nickle he never said anything to me about foods, vitamins, minerals, medicines that contain NickleI was reacting very badly to belt buckles, wrist & neck chains, watches I would break out in severe itchy hives & itch until I would bleed. 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/). Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. Wonder if the two are connected. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . 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. Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. and many of my autonomic manifestations, including POTS, under control. With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. Although its painful to take in, its important for patients to hear and read about patients, like Jen and like me, who have recovered in different ways. Fighting the 'Plandemic' and Other Science Disinformation Campaigns. nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! Huperzine A caused tummy issues with me, as did mestinon. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? amzn_assoc_default_search_category = ""; Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. Next day, the stallion returned, leading a string of fine ponies. I had the opportunity to work at a fairly renowned clinic for a brief period that works with people with ME/CFS. I wonder if a move is in store? 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. At one point as I remember she reported that she could do a lot of mental activity but hardly any physical activity. Learning about Jens recovery yesterday and how she recovered, blew my socks off and I dont think Im alone in that based on all the responses. I existed within my own bed, within my own mind, playing with ideas in a race against time. Previously, she was a freelance journalist in China and East and Southern Africa. At least now, she is out of her pain. . It will certainly show up in future blogs. Anothers surgery is on tap and one was recently done. 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. After reading Jeffs account Mattie thought he didnt have CCI/AAI but got it checked out anyway and found, to his surprise, that he did. Her new health she says she will stay involved is a gift not just to her but to all of us. I'm here to answer your questions! 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. I have read many stories on my EDS forum about this problem of a missed diagnosis. Find a doctor Back Find a Doctor. Jennifer Michelle Bra and Omar Tomas Wasow are to be married Sunday outside the Aquinnah Lighthouse in Aquinnah, Mass., on Martha's Vineyard. What an unbelievable relief that must be. Shes been in a wheelchair almost her entire time with this disease. I sleep much more better, not perfect, but fine most of the nights. The only thing that stands out in my mind are a series of incidents where I was looking down at my phone, texting with someone, when I almost lost consciousness. Jan 17, 2019. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. Thanks for sharing this Cort. Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. My bedsheets were brown in a week with toxins..still are. This was a friend of mine and it was horrible for her. BTW, there were several miraculous recoveries from brain stenting as well. 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. Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. reduced gut bacteria That procedure sounds about as spine-tinglingly scary as anything I can imagine. Dr. Nigel Speight, is one . Some evidence directly implicates the brainstem in ME/CFS. 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