Mattie, a web developer in the Netherlands, had a gradual onset of ME/CFS in 2010 and slowly declined over time. 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? But Im leery of these fixes. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. Jennifer Brea's Amazing ME/CFS Recovering Story; ME/CFS and Fibromyalgia Spinal Stenosis Survey . amzn_assoc_marketplace = "amazon";
I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! I hope not. 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. Slowly, I moved from very severe, to severe, to moderate on the spectrum. Its going to be interesting figuring this all out! In wich country is it and what is physiatrist? 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. so I am desperate, said and angry to. Just talk to others of us. For many many years i have had this huge spinal lump of bone where the whiplash/arthritis showed up. 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. She doesnt appear to have ME/CFS anymore, though, and in six months, she may be completely healthy. There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. But I want to feel even better, so I am going to pursue more neck/head related options. I think I am going to pursue this neck thing, return to PT for my neck and maybe try a cervical collar. 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. I wish you the best! Hi! I do have all the other problems like chemical sensativitieson and on and on with all the other stuff. Tip! Neither are required. Thanks. . Jennifer Brea Wiki, Biography, Age as Wikipedia. Compare it to be used to ride a car and all of a sudden having that car replaced by a truck for mining operations. reduced gut bacteria I asked him how we could rely on the literature without documentation of case reports. I have a mild chiari that is not obstructing flow but what happens when I have inflammation? The NPI number of Jennifer Brea is 1770123416 and was assigned on January 2020. When the fever lifted, she was left bedridden, dizzy, and despondent. I know many many things can relate to a CFS, just needed to share my journey in order to help keep building that puzzle. Why you should listen. The symptoms are VERY similar to many of our ME CFS symptoms. Thank you, thank you, thank you. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. 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. Lets instead spread realistic hope that there are answers, varied as they are, to our collective suffering. My body aches and couldnt turn my head without severe symptoms. There are so many people in the forums who are not that much better from these surgeries. and am even sobedridden I could not go to see a specialist or getting at a hospital. 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. [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 have been taking 40 mg daily ever since. It was a 6 month recovery and right before getting surgery, to make a long story short, my neurosurgeon decided that I was healing on my own and we didnt need to fuse all three vertebrae together. I have bought Dr. Raymond Perrins book and no person in this area can do these exersices so im doing them myselfmy lumps are going awayi still have many many issues. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. 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. At the beginning of May, a 26-minute trailer for the movie . Jens story beginning with thyroid cancer reminds me of this story told on the TV show Northern Exposure by character Marilyn to Ed. Neither could have pointed to their head/neck area as a likely cause of their illness. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). I am happy for Jeff and Jan! Surprisingly, I find I sleep best with my legs higher than my head. I thought about this during the movie. 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. Everything felt to me to be systemic. They give me antidepressive pills I wont take. Im sure that one day we will all have access to great medical care and the work of yourself and people like Jen sure does go a very long way to this end. She said it can also cause countless symptoms, when I saw the. Jennifer Brea: I have craniocervical and atlantoaxial instability. Dr. Jennifer Brey, MD. Jeff and Jen Brea are leading examples. Joint hypermobility with its possible complications is now classified using the idea of a spectrum. Prior to her surgeries, Jen Brea was at her lowest point ever having trouble breathing, unable to speak or think at times yet six months later she is able to exercise. @Kim After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. Both were classic ME patients with all that implies (post-exertional malaise (PEM), viral infections, MCAS, POTS, sensory sensitivities). However, and I state again, she was not an HEDS patient. ME is buried more. 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. Be well! With EDS, having cranial instability (in addition to instability in many other places in the body) is quite understandable due to the compromised connective tissue. I think the question of just what exactly is ME/CFS is going to come up more and more. Later on its harder to find them as they hide away in tissues eg brain. Happiness that someone who has been so ill may no longer be suffering. I cant even find the words to let you know how thrilled I am for you! 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. Jeff and Jen and two other people have found a way and a remarkable 20 people on Phoenix RIsing have gotten a diagnosis. Neurosurgeons and other EDS specialists have expounded on the connection between CCI and forms of dysautonomia such as postural orthostatic tachycardia syndrome (POTS) . Im just reading his book and had a eureka moment. How about tho an enteroviral attack that weakened those ligaments? That being said it is my hope that you can put your forces behind the search for a biological marker. It is not intended as medical advice and should be used for informational purposes only. Colby said they could find the suspected neurotropic viruses implicated in ME by this tried and tested method if samples were taken early in the illness but its no longer done. My bedsheets were brown in a week with toxins..still are. He did also say the Royal Free outbreak he documented as he was a physician there when it happened seemed to resemble previous documented atypical polymyelitsis outbreaks. The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. I immediately recognized her CFS the first time I saw her by the way she sits. From someone on the Cusack protocol FB group: Hypermobility disorder is diagnosed when the symptoms are primarily joint related. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. I am absolutely thrilled to hear such wonderful news! There are still the vagal sympathetic synptoms and the neck pain. Carol. So trying to do a movement as you did before results in an utter lack of coordination. 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. With all the other factors Jen and Jeff had the POTS, MCAS, the fact that Jen was taking several drugs that often help with ME/CFS my guess is that she would test positive on Rons test that their brand of CCI/AAI basically caused ME/CFS while other brands of CCI/AAI do not. 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/). Claiming those who recover never had the illness in the first place or were misdiagnosed seems a popular response for some. 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. Its going to get really interesting! Im pretty sure my ME has a biomechanical cause. I have read many stories on my EDS forum about this problem of a missed diagnosis. Thank you. Alsocheck out the website, Hormones Matters, and all the articles about Thiamine Deficiency. Jeff and Jens stories do bring a new focus to the spine and brainstem. But people should have support and pace through these studies and surgeries. Im sure Ron and Janet have thought a lot about this. This is most likely from tryptase which acts like a meat tenderizer. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. Each episode of CFS would start out with cold sores, sore throat, severe fatigue, sleep disruption, achy joints and muscles, etc. #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of ME. Havent we been through this before? 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. Merck reported that symptom improvement during a procedure called Invasive Cervical Traction (ICT) where ones head is pulled upward by a pulley system can help diagnose CCI/AAI. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). Hi Cort- I cant keep up with all the reading around this issue so I might have missed this, but will their case reports be published? 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. 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. It was all about money and about her and her film production career, Agreed. The problem with doctors is the way they think. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. Brain cells in hibernation dont process information at the same speed and strength. 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. I have had M.E since developing Adult on-set Stills Disease in 2011. After spending over $200K on more traditional treatments, mold avoidance did it for Joey. You mentioned getting the proper imaging for diagnosis. I know few of the above. Narrower everything? That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. I had to write about my feelings for an hour or so yesterday in order to help process it was definitely a case of mixed emotions. Lets not add to the confusion that this high publicity case is going to bring to us. amzn_assoc_tracking_id = "patientrising-20";
No mast cells are not the master cells of the immune system I think you mean the inate immune system. Not even Mestinon, an old and safe drug which Jen, by the way, found that helped her. I found them after PT worsened by double cervical herniated discs, a few years ago. This model may also apply to Long COVID. We stopped before looking deeply (pardon the pun) into venous stenosis in brain. I am also copper zinc imbalanced. Omar Wasow, Jennifer Brea and Anna Deavere Smith attend the HBO "Notes from the Field" Sundance Dinner at The St. Regis Deer Valley on January 20,. I have been trying to find someone who does cranial sacral massage but since I live in Hilo, I cant find anyone who does it (at least correctly). Theres so much education that is needed on so many different fronts. So weve got a small spinal fluid pump / mixer which may be a good thing. I just want to put out there that as a physiatrist CCI is a diagnosis that were extensively trained in and we dont miss. 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. These people may also have many of the non-musculoskeletal disorders associated with hEDS, but they do not quite qualify for hEDS. She has a tethered cord but that surgery does not cure CFSME either. I also agree that spinal fusion, especially such a highly specialized procedure as craniocervical fusion, would not be my first pick for treatment. Its been used to treat whiplash for years and has been used in EDS but is not well studied. As I dont believe at this point that treating cranial instability will be a one-size-fits-all treatment it makes the challenge of treating ME seem even more perplexing. . Jens rebound after being in such bad shape did suggest we have amazing powers of recuperation. Thanks Nancy. Decades after falling ill it was corrected. Jennifers story provides a clearer picture (and a good example) of how one small thing, like an environmental exposure can, in susceptible people, cause a cascade effect that quickly causes dysfunction, and disability, in the body on so many levels at once. Or an enteroviral attack which sparked an immune response which attacked those ligaments? A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. I always chalked it up to POTS and Im an expert at dealing with weird shit going on in my body anyway. Ill leave Jennifer and others to judge upon how it affects them. You need an individual practitioner (teacher in Alexander Technique lingo) though there are a few things you can do at home on your own. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. Traction is very dangerous in CCI. The common thread with all these things is that any form of stress (good or bad) causes reactions in the body which produce toxins as a by-product. And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. A word of caution. Some people with CCI also benefit from home neck traction devices. Fast forward to aprox. Are a subset of us members of a lost tribe? Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. She describes how her online community helped her find the right diagnosis. fast forward to 8 months ago my natropathic doc says we need to test your heavy metalsit comes back that my levels of uranium, nickel and antimony are way high. Thank you for all of your work, and for your tireless advocacy efforts. Register for our free ME/CFS, fibromyalgia, and long COVID blogs here. I love that she went VERY QUIET when she realised it was not in fact ME/CFS but the CCI thing. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? This was a friend of mine and it was horrible for her. I benefit enormously from neck traction-like interventions like the neck hammock. (170) 7.5 1 h 37 min 2017 13+ Jennifer Brea is about to marry the love of her life when she's struck down by a fever that leaves her bedridden. In my humble opinion, the theory and therapy offered by Dr Raymond Perrin is worth a second look and may fit with/explain Jennifers recovery story. 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. Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. Around 2000, a group of Fibro and CFS patients, including myself, were diagnose with Arnold Chiari Malformation. People unaware of this may underestimate how debilitating this moderate to severe illness truly is. Still, Im hoping that: a) CCI/AAI is not a common diagnosis; or b) if it is, that non-surgical treatments can be as helpful as surgery. I send you love and every wish that you will get help soon. It was really hard to read. Besides, if I could pick one person to get well one person who, if healthy, could advance our cause the most it would undoubtedly be Jen Brea. She couldnt even get the facts right here. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. Thanks. Cort, your question is a very good one about is CCI an autoimmune consequence. She also helped to found MEAction and has fought for recognition for CFS. youve forgotten them or they are lost to you. Sun 22 Oct 2017 03.00 EDT Last modified on Wed 21 Mar 2018 19.49 EDT. Hes not a problem anymore. And, again, this would also fit in with the prevalence of ME in the EDS population. She was playing to be seen to do the right thing but in fact didnt. Also EDS tissue can have a tendency to stretch and droop out of position. I'm now in full remission. Two things happen mechanically when pulling onto that tail even a little bit. My symptoms start after I do too much work/exercise that includes my shoulders and neck. Three months post-surgery hes nowhere near healthy, but hes no longer mostly bedridden, POTS, dysautonomia, headaches and neck pain have disappeared, and he has more energy. 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. 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. So sorry to hear that Deb. Check out the difference between the3T and 1.5T machines). Some people with ligament laxity have improved usingthe Cusack Protocol. Thanks so much Cort. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. I can understand the objection, but I wouldnt call Jen Brea case a misdiagnosis. Simran Hans @heavier_things . Having skills retrained makes them (much) more energy efficient too so it has part in a slow process of increasing the energy envelope too. Don't miss another one. Also last year, I bought one of those bed bases that lets you elevate your head and/or feet. Jean Bentley Dec 7, 2017 4:20 pm @. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. (Plus, few years I took anticeptive pills for a while, and I got worst, so need to share that too! Surgery was the only option for Jeff and Jen, but its not for everyone. Truly is a diagnosis of exclusion. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. The rest is speculation. 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. Im still waiting ?. Best of luck! Fighting the 'Plandemic' and Other Science Disinformation Campaigns. I have videos, and written testimonials, and Glen Miller aged in his Sixties can be interviewed in, Melbourne, Victoria, Australia. Eds population the movie, not weaker film production career, Agreed in an utter lack of.. Back to childhood or infancy we stopped before looking deeply ( pardon the pun into. I asked him how we could rely on the spectrum is ME/CFS jennifer brea neurosurgeon to. So many different fronts claiming those who recover never had the illness in the EDS.., mold avoidance to antivirals, Fludrocortisone ( for POTS ) jennifer brea neurosurgeon and long blogs. Speed ( 50km/hr. ) and all the articles about Thiamine Deficiency out the difference the3T! 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