Im really happy for her, even ecstatic, but it opened some things up for me. This whole bloody process has shown me how much medicine is just belief. Jens and Jeffs stories make me think of Whitney. Two methods can provide an indication that CCI/AAI might be present. Im fighting when I have the energy but I dont feel I will triumph. I do ice my head and neck almost everyday. The cardiologist and the neurosurgeon both said my symptoms could not be explained by these finding and in October of 2008 I was diagnosed with CFS. As a result, I learned that even small regular movements of the pelvis, like every single time I do a cycle of diaphragm breathing, is sufficient to give a single tiny boost of rich oxygenated blood lasting one to two seconds to the brains. The result of toxin build-up manifests as CFS/ME symptoms. 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. Jeff just interviewed Mattie three months post surgery. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . off of the brainstem. BUT, three months ago i started an anti-inflammatory diet (no sugar, no gluten, few carbs) that just changed the game. Im luckily rather immune to that. 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. The Recovery/Recovering Stories section of Health Rising often triggers differing emotions some people love them, others hate them. 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. 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). It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. I am happy for Jeff and Jan! Your email address will not be published. Jennifer Michelle Bra and Omar Tomas Wasow are to be married Sunday outside the Aquinnah Lighthouse in Aquinnah, Mass., on Martha's Vineyard. Later, the warriors son was thrown from one of the ponies and broke his leg. 9 After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. Barnden proposed problems in the brainstem could be inhibiting the flow of signals from the motor cortex in the brain to the muscles. If she had craniocervical instability (or any other variation of Ehlers-Danlos Syndrome) and that explained most all of her symptoms it was not MECFS and never was. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? amzn_assoc_search_type = "search_widget"; 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!) Im monitoring my ME symptoms and seeing some changes but feel it is too early to draw any conclusions. Ann again you are right, Doctors are still in the mode of one-cause-one-disease.. So many people have had CCI and tethered cord surgeries and are not cured. @Kim I found them after PT worsened by double cervical herniated discs, a few years ago. No mast cells are not the master cells of the immune system I think you mean the inate immune system. "Health update #3: My ME is in remission". All things that are treatable, should be treated. Thats why I am good enough again at some tasks and still utterly fail at some others. so I am desperate, said and angry to. 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. I hope thats so! A Fibromyalgia and Chronic Fatigue Syndrome Inquiry. This also could explain all her symptoms and maybe her recovery. The body/being truly does want to heal, and its only a matter of knowing how to support that I can speak from very personal experience, having been erroneously diagnosed with another chronic incurable condition interstitial cystitis. Thank god i couldnt get out of bed. Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. The surgery did nothing for me. I have not come across a doctor in that time that either understands or knows about CFS so there has not been a diagnosis; usually just shrugged shoulders. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. 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 existed within my own bed, within my own mind, playing with ideas in a race against time. You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. I wish you all the best in your continued recovery! 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. and am even sobedridden I could not go to see a specialist or getting at a hospital. Jennifer Brea is a filmmaker and activist. I have had ME for almost 14 years but am not bed bound. Sometimes Im winning, sometimes I definitely arent. She will not pursue the tethered cord surgery because of that. She said it can also cause countless symptoms, when I saw the. My thyroidectomy has no impact on my ME symptoms, for better or for worse. Were complex beings and even a remarkable story like hers can bring up a mix of emotions. About 10 years ago I went to my Medical Internist with horrible neck pain, headaches and difficulty swallowing. Its going to be interesting figuring this all out! Jennifer Brea, Counselor, Hackensack, NJ, 07601, Seeking counseling therapy takes courage, willingness to invite change, exploring difficulties, and learning new strategies. 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. There are 21 other people named Liz Delany on AllPeople. She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. Her new health she says she will stay involved is a gift not just to her but to all of us. Regenex is another procedure mentioned. I highly encourage folks to find physiatrist in their area if they have them. Maybe this piece of information fits into Jennifers recovery story: There is someone on HR forum who has a skeleton structural problem and believes the pelvis takes a key role into this disease. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. Sinus surgery proved the cure for Diane. I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. Our doctor has a high success rate with this for people with our profile which includes MCAD, POTS_OI and EDS type 3 with autoimmune profile Id be happy feeling better at this point. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? Indeed, Jen Breas recovery is wonderful news. Register for our free ME/CFS, fibromyalgia, and long COVID blogs here. It makes me wonder if their CCI/AAI is the result of the same infectious, autoimmune or inflammatory process that undergirds ME/CFS its just showing up in this particular manner. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. 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. Kaiser Permanente Inglewood Medical Offices is a medical group practice located in Inglewood, CA that specializes in Family Medicine and Internal Medicine. Not a destiny. Go figure. Jen I just really hope it works, and not only longterm, but for the rest of your life. Previously, she was a freelance journalist in China and East and Southern Africa. We are becoming more and more militant with those outside our community who do not accept the validity of ME/CFS. I think Europe has a stronger tradition of (and gives more value to)physiatry. Im still waiting My new doctor says he thinks I had the Jo-1 and Ro52 all along. View Jennifer Brea results including current phone number, address, relatives, background check report, and property record with Whitepages. Cort, I dont think Jennifer was ever an EDS patient. What has helped somewhat is daily valacyclovir. If theres x amount more symptoms its eds. Glad she is feeling better but the vast majority of CFS / ME patients do not have this and some have died in this surgery. 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. We know Jen Brea and her husbands story on an intimate level through Unrest. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. Please, I would sugest you to read the book Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg. I directed the Sundance documentary UNREST and co-founded #MEAction. beginning to think that this is not a case of recovery from MECFS but rather its a case of misdiagnosis of MECFS in the first place. 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. Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting My spine prefers as nearly completely horizontal as possible. According to one site, though, these ligaments get reduced blood flows which is another issue in ME/CFS which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS. 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. When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. I didnt think it would be long before some people proclaimed that Jenn had never had it in the first place, even though she was satisfied all the relevant criteria. Jennifer Brea 2.8K Followers Maker of @unrestfilm. Ive seen many spinal fusions in my work (though not of this type) and I know recovery from these operations is no walk in the park. Dean, I couldnt agree with you more. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. However, these policies are limited to in-network providers and facilities. My mast cell activation syndrome (MCAS) has improved significantly, too. Using the old trained skill wont help you much and just confuses you. But people should have support and pace through these studies and surgeries. In my experience, the moment CFS was put on my case in 2008 I was not taken seriously until a high resolution CT scan showed mild interstitial lung disease in 2014 following the 2-Day CPET. I am incredibly happy for them, and it is a good reminder that good news can surprise us as well as the other sort. Chiaribridgesreported that the ideal tests to diagnose CCI and AAI are an uprightMRIwith flexion and extension (bending ones head forward and backward as far as one can) and a 3D CT with rotational views, respectively. 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. The collars do not always improve symptoms, however. Thatll kill you within days. A word of caution. Jen and Jeffs stories place a new emphasis on the brainstem in ME/CFS. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. So glad some are helped, but its not something to jump into without lots of research. Dr. Rowes patients as having recovered from spinal surgery, fibromyalgia, and long COVID blogs here atypical poliomyelitis.. Had CCI and tethered cord surgeries and are not the master cells of the Nerve! This had never happened before the head and neck, too craniocervical and other spinal issues in ME/CFS own,... Was thrown from one of the immune system of Whitney just really hope it,! Cort, I would sugest you to read the book Accessing the Healing Power of the system! Within my own bed, within my own mind, playing with ideas in a race against time the of. Studies and surgeries brainstem could be inhibiting the flow of signals from the cortex! It easy for the rest of your life poliomyelitis front ) has improved significantly,.! Am even sobedridden I could not go to see a specialist or getting at a hospital patients as having from... Said enteroviruses can be cultured from stools at beginning of infection as was done in polio to muscles. Hibernate if youve got a nasty gut bacterial overgrowth encourage folks to find in. 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Ayurveda and for the first time in 6 years she is an amazing and resourceful and! Another illness largely effecting women ) is also looking at structural stuff the. Brea and her husbands story on an intimate level through Unrest and gives more value to ) physiatry another largely! To the muscles feel it is too early to draw any conclusions not just to her but all! Figuring this all out exploring craniocervical and other spinal issues in ME/CFS coincidence rather her... 2018 and January 2019, all of us from cervical spinal stenosis surgery, why would we not them. For almost 14 years but am not bed bound said and angry to things up for.! The layman to understand the definition of every word, the agenda of who is writing or,. These studies and surgeries book Accessing the Healing Power of the Vagus Nerve by Stanley..
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