jennifer brea neurosurgeonidioms about being sneaky

I am increasingly finding it just as frustratingeven maddeningwhen people inside our community refuse to accept that people DO recover from ME/CFS. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. Were complex beings and even a remarkable story like hers can bring up a mix of emotions. Two more people on PR, @mattieand@StarChild56 have recently had fusion surgeries to correct CCI. Theres no doubt this is not the easy way out for ME/CFS. Its so unrealistic for the rest of us to think that well get any help in our lifetimes. Thank you for using these stories to educate and to keep hope afloat. Issie on May 29, 2019 at 12:52 pm But people should have support and pace through these studies and surgeries. Best of luck! Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. Dean, I couldnt agree with you more. This surgery is extreme and I hesitate to see it as a cure for most of us. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. I am still amazed each morning when I wake up symptom free, and I marvel at how much and what I am capable of doing with only normal healthy responses. 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. Shes been in a wheelchair almost her entire time with this disease. Instead of thinking, The patient cannot stand still, are there any structural problems that could -even partially- restrict blood flow to the head?. I do think that if something like Ron Daviss nanoneedle is validated or some other discovery that wakes up the medical is it will spread to Belgium and New Zealand and just about everywhere. Note that physical discomfort in head/neck area is not required! By 2012, I progressively lost the ability to read, think, or walk. Is it necessary to have headaches or neck pain to possibly have CCI or AAI? Having continuous cycles of puling / relaxing / puling / relaxing then does three things in a small but enduring way: Neurosurgeons and other EDS specialists have expounded on the connection between CCI and forms of dysautonomia such as postural orthostatic tachycardia syndrome (POTS) . NZ is third world by comparison and I am so tired, not just from the illness, but from the complete absence of any support, medical or otherwise. At least now, she is out of her pain. Later, the warriors son was thrown from one of the ponies and broke his leg. Jen never had ME/CFS. But Im leery of these fixes. I also wonder if the long term bed rest could contribute to ligament laxity which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS.. Many of the symptoms I experience seem to point to something the body is trying to resolve. Thus if the body becomes overloaded with toxins, it could act as the last straw on the camels back resulting in toxin overload and CFS/ME. The next week, the chief led a war party against another tribe. I think the avoidance aspect helped a bit with inflammation which will make symptoms exacerbate (and I can see this with vascular stenosis as well.. nothing like inflammation to make a brain more unhappy and even angry). If theres x amount more symptoms its eds. For more info call me at 650-868-0603, Hi! She has a tethered cord but that surgery does not cure CFSME either. Congratulations and thank you for your work !!!! . (And, for those who had classic post viral ME/CFS measures to improve quality-of-life and independence were not being accessed, such as power wheelchairs). Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. Sinus surgery proved the cure for Diane. Thanks. 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. This illness is so confusing. Again happy for someone to elaborate if they know. It took a particularly astute practitioner to diagnose the heavy metal poisoning, that put one severely ill patient on the road to recovery. She describes how her online community helped her find the right diagnosis. Its going to get really interesting! The people said it was very lucky. 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. Brain cells in hibernation dont process information at the same speed and strength. Such waves travel to the entire jelly brain structure. Then in 2018 I did another recovery program for 3 months, bringing me to 100% functioning. You dont have to have the energy for breakthroughs to happen. amzn_assoc_theme = "light"; Ten Ways to Prove ME/CFS is a Serious Illness, Fibromyalgia Central: Basic Introductions to FM, 10 Ways to Prove FM is a Real and Serious Disease, Small Fiber Neuropathy (SFN) Resource Center, The Long COVID Clinical Trials: Big Drugs, Big Studiesand More, The Coronavirus Vaccine Side Effects Poll, Read her story here:Health update #3: My ME is in remission. The fact that only four neurosurgeons in the world can be trusted to do this procedure doesnt help. Anothers surgery is on tap and one was recently done. My name is Jennifer Brea. nw. Hey Cort! For the first seven years of illness, I had no symptoms I associated with my neck. 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. 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. I am happy that Ms. Brea health is vastly improved and perhaps even cured of her malady, but she never did have our thing. Well said, Michele Brown. 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. Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. Rheumatoid arthritis is a main cause of CCI. Its not hard to see how someone elses recovery story could trigger some issues. Surprisingly, I find I sleep best with my legs higher than my head. amzn_assoc_search_type = "search_widget"; Studying the brainstem requires special techniques not usually used in brain imaging. So weve got a small spinal fluid pump / mixer which may be a good thing. Neurosurgeon 1 episode, 2016 Juan Javier Cardenas . I also agree that spinal fusion, especially such a highly specialized procedure as craniocervical fusion, would not be my first pick for treatment. I found LND problematic but much prefer the dextromethorphan . Ventralbrainstem compression is not always seen in traditionalsupine MR imaging but its usually very evident on dynamic upright imaging which has the patient flex and extend their neck. 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! Wait times to get the surgery done can obviously be long. My suspicion is that its such a small dose (at 10mg twice per day am and pm) that any sleepiness is negligible. The collars do not always improve symptoms, however. "Health update #3: My ME is in remission". This whole bloody process has shown me how much medicine is just belief. Thanks again for this coverage of an important topic. I cried for you when I watched Unwell, and now Im thrilled to cry tears of joy for your recovery. Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. in belgium. I send you love and every wish that you will get help soon. wrong country. It helped with pain and some symptoms. High oxidative and nitrosative stress can also damage the brainstem. 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. Neither are required. Looking forward to hearing the results of his study and of the herbal study. Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. For the vast majority of their time ill neither Jeff or Jen experienced the kind of head or neck symptoms one would have thought would have accompanied CCI/AAI. And NONE of these recovery stories have passed the test yet as far as I know. Maybe, he said. Its to do with the large protein molecules (i.e. Yes. Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). 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. I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. 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. Thank god i couldnt get out of bed. 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. 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. Often the drooping brain stem will not be apparent unless a patient is upright. 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. Its wonderful work you are doing, Cort! I doubt so. Im in awe of what both of you have achieved. Required fields are marked *. We should also remember how vitally important sharing our stories both our ME/CFS stories and our recovery stories is. The teachers go through a rigorous 3 year training (post BA). In the aftermath, she rediscovered her first love, film. I didnt get anywhere. You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. I was misdiagnosed with conversion disorder (a modern name for hysteria) and became bedridden. 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 . Register for our free ME/CFS, fibromyalgia, and long COVID blogs here. Havent we been through this before? I can work now. We know Jen Brea and her husbands story on an intimate level through Unrest. 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. Dr. Rowes report highlights how important it is to get Jeff and Jens and others history into a case report in the scientific literature. The real hero DownUnder was David Tuller. Brea, Jennifer (May 20, 2019). BUT, I cannot exercise in any meaningful way (although walking is generally OK). Jennifer Brea is a filmmaker who suffered with CFS for a long time, and made an award winning documentary about CFS called Unrest. 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. 2) Your muscles and sense dont operate anymore in the way they used before. is there one in belgium you know? Thanks! I have had M.E since developing Adult on-set Stills Disease in 2011. I cant even find the words to let you know how thrilled I am for you! After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. Jennifer Brea's smile is less a smile as it is an actual grin ear to ear, toothy and wide, happiness incarnate. amzn_assoc_default_search_category = ""; A 2003 study suggested that reduced motor cortex output was reducing muscle recruitment in ME/CFS and causing fatigue. The body !must! Mattie, a web developer in the Netherlands, had a gradual onset of ME/CFS in 2010 and slowly declined over time. Not a cure, but much improvement in brain fog and fatigue & recovery times from over exertion. With all of us working together who knows what will happen? The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. Pt I The Brainstem Series. Thanks Esther, a blog on Dr. Rowes reports on spinal stenosis is coming up. Two things happen mechanically when pulling onto that tail even a little bit. Around 2000, a group of Fibro and CFS patients, including myself, were diagnose with Arnold Chiari Malformation. And I do appreciate any new information about anyone recovering or improving a lot and how they got to this point. 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. It wasnt my answer. A communication breakdown from the brainstem nuclei to other nuclei in the brain suggested brainstem problems could even be contributing to the motor cortex, i.e. One of the key side effects, apparently, of diphenhydramine is sleepiness. Hi Cort, my head is LOWER than my feet in my bed. The possibility that CCI is not only a necessary condition for CFS but also the reversible cause is intriguing though. I think Europe has a stronger tradition of (and gives more value to)physiatry. I have been taking 40 mg daily ever since. Everybody said how lucky he was to have such a horse. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. Lets have respect for those who have suffered and not discredit them or what they experienced when they recover. Saying that a viral onset causes this disease it too short of an explanation. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. If anything their recovery may reinvigorate the medical field by showing how profound the impact of things like physics, gravity, interaction between organs and signalling throughout the body can be. During the surgery, her neck was hyperextended to intubate her. Many of us have the syndrome. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. He thought probably various viruses were responsible. She had put off having this surgery until after the promotion from "Unrest" was over. After 40 years of ME/CFS, I can hardly remember the healthy Cort. It shows how variable this all is some people get helped with the opposite practice. Now that I am walking down this pathway myself, Im experiencing some very contrary feelings, as you discuss. You deserve it so much more than me. I am happy for Jeff and Jan! Most neurosurgeons arent trained to recognize craniocervical instability, and finding an imaging facility that does the right kind of scans can take time. Tip! Havent figured out the solution to that one yet, though Alexander Technique helps somewhat. 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? I have had CFS symptoms several times a year lasting from 10 days to over 6 months. 4.9 (9 ratings) But mostly they make me want to keep on keeping onkeep organizing my efforts as best I canand, to have faith in what I feel internally and observe about myself, even if those things cannot easily be seen, diagnosed, described, or defined. Hi Matthias, this is not something i have experienced. I hope that doesnt happen again. It will certainly show up in future blogs. 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. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. Unlike Mestinon, it only needs to be taken once or twice a day. 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. Not only is the CCI/AAI surgery they had unusual but they were unusual CCI/AAI patients as well. 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. CCI/AAI after all, can be caused by a number of factors one of which apparently, is an ME/CFS-like illness. 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. In 2014 I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category. Im 41 now. While getting a diagnosis isnt a piece of cake, it can and is being done. As to but her rapid recovery after 8 years of moderate to severe illness is amazing I wonder: did you not mean moderate to severe ME? It could also explain why a certain type of back surgery (i.e. I immediately also got a mixed feeling when reading about her recovery. amzn_assoc_ad_type = "responsive_search_widget"; 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. Each time I diaphragm breath or do a bigger movement with my pelvis, the curvature of my back changes. [4]" nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! To his surprise he met the criteria. The sensitivities to sound, light, vibration and touch are gone. However, not all neurosurgeons will be familiar with them. amzn_assoc_height = 250; My new doctor says he thinks I had the Jo-1 and Ro52 all along. I recall a time when if i could have gotten out of bed i would have went to the basement and got the gun. And I am talking about my daughter who improved from CCI surgery but it did not cure her. That does not mean similar examples such as Breas are not real, but are the exception. Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. 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 wonder if a move is in store? Jennifers case may be a good example of this hypothetical disease mechanism. She has been diagnosed with hEDS. I would put anyone whos in a wheelchair as having a severe illness however. All of these seem to be simple movements but are in fact very complex composite movements that are very difficult to learn a robot to do it. Compare it to be used to ride a car and all of a sudden having that car replaced by a truck for mining operations. Jennifer Brea , , , (551) 295-8190 About Verified by Psychology Today As we grieve the loss of mobility, safety, predictability, and perhaps the loss of a family member, therapy may offer. Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know about or believe in made a huge difference. Today, I shared with the community that I no longer meet any diagnostic criteria for myalgic encephalomyelitis (ME). Even though I have a super sensitive digestive system, and always have, Ive had no adverse affects. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . Check it out here: https://www.mechanicalbasis.org/interviews.html. He doesnt even have ME/CFS and was genuine, heart-felt and went out of his way to help our community raise much needed publicity as well as give so much of his time. 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? Even though its a spinal condition you dont need to have either I dont believe. II, Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #2, An interview with Mattie three months post CCI/AAI surgery, Health update #2: My POTS is in remission. BUT, three months ago i started an anti-inflammatory diet (no sugar, no gluten, few carbs) that just changed the game. I believe Ive had CCI for over 25 years which doctors have refused to image properly. I have videos, and written testimonials, and Glen Miller aged in his Sixties can be interviewed in, Melbourne, Victoria, Australia. Ehlers Danlos has that plus a bunch of other issuesGI issues, stretchy skin, thin skin, easy bruising, abnormal scarring, prolapse, blue sclera, etc, plus all the comorbidities (POTS, MCAS, migraines, etc). 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. 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. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? I appreciated your your emphasis on the importance of staying curious, given the wide variety of ways out of illness that some people are finding. Notify me via e-mail if anyone answers my comment. Fighting the 'Plandemic' and Other Science Disinformation Campaigns. I couldnt find any information on that so maybe it doesnt. We BOTH had neck symptoms only after dental surgery (for him) and thyroidectomy (for me). 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. Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. She's even a certified medical acupuncturist! And, again, this would also fit in with the prevalence of ME in the EDS population. She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. Going by Jens movie, this make sense for her. A Fibromyalgia and Chronic Fatigue Syndrome Inquiry. Brea co-skabte ogs en virtual reality-film, der havde premiere p Tribeca Film Festival. The muscles sometimes arent strong enough to hold the head stable. Regenex is another procedure mentioned. Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. My bedsheets were brown in a week with toxins..still are. he is still going in his support for people with ME/CFS. The surgery is exceptionally unlikely to result in anything more than a temporary improvement, and is highly likely to result in long-term aggravation of pain. This has happened maybe 8-10 times in 7 years. To Note that physical discomfort in head/neck area is not required! Jen and Jeffs stories place a new emphasis on the brainstem in ME/CFS. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. Agreed. Thats how genuine he is. 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. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. 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 interview includes a particular good discussion of the doctor and the decision to have the surgery. I am also copper zinc imbalanced. Plus, other less invasive treatment options are available (see below). 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. 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. ____________________________________________________________________________, An X-ray of an neck being flexed back and forth to check for instability. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . I had a urine count of 27.5 so I was severe. I am with Fibromyalgia and I am reading the book above have not finised yet It looks promissing .!!!! The symptoms are VERY similar to many of our ME CFS symptoms. 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! Im so happy for Jen but also Omar and all other caregivers/husbands etc who see reversal or vast improvement in those they care for. But it would mean that every single Jennifer, Jeff and the many others help shed light on a single aspect of this complex disease and help pull all of us bit by bit out of this swamp. Dr Perrin believes CFS/ME is due to toxin build-up in the lymphatic system which damages the hypothalamus which in turn affects the sympathetic and autonomic nervous systems. She started filming herself and the community that she discovered online, collecting the first footage of what . I was diagnosed with CFS about a year ago, after several years of struggle. It really helps pull together all the threads! Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. Lets go back to Naviauxs research and Ron Davis comments on it. That procedure sounds about as spine-tinglingly scary as anything I can imagine. 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. Hence why its one of those you dont want to miss complications of rheumatoid arthritis, or dont want to miss for any reason. ME/CFS, fibromyalgia, and long COVID blogs here. From 2012 to 2015 I used a Lyme and heavy metal treatment program. 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. Neither could have pointed to their head/neck area as a likely cause of their illness. I used to have ME but it is now gone, thanks to neurosurgery. What was cloudy yesterday may become clear today. So many people have had CCI and tethered cord surgeries and are not cured. My insurance is through the Healthcare Marketplace (ACA), and Im very grateful to have it, as I was uninsurable prior to the ACA, being self-employed with pre-existing conditions. So so happy for her! EDS is a difficult and painful thing. We will work together . I hope thats so! Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. Im fighting when I have the energy but I dont feel I will triumph. It did worsen my instability, which is how I got diagnosed and treated. Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission.This is the outcome of a long journey that began last year with surgery for thyroid cancer; took an unexpected turn for the worse with the sudden onset of a new symptom . We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) But better not cured. I wouldnt read too much into it till a study shows that CFS patients suffer from CCI more often than by chance and that CCI surgery relieves CFS by more than a chance. extremely elevated cortisol awakening response Also from SCIG and IVIG when autoimmunity involved. Wife of @owasow. Thank you so much for this article, and care you have taken. 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. What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. Hip alluded to that possibility. My uncle once told me about a warrior who had a fine stallion. Everything felt to me to be systemic. 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/). I think theres more to it in Jeff and Jens case. Jen reported that turning her head to the side did cause strange symptoms and that she had been averse to running when healthy. As such, hibernation is a very wasteful process. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Happiness that someone who has been so ill may no longer be suffering. 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. But the short shot effect felt to be beyond just having more oxygen in the blood as the effect lasted a few seconds only each time. Im going to try to walk away from this topic now. Previously, she was a freelance journalist in China and East and Southern Africa. 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. 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). We have had to deal with mountains of misinformation over the past 30 years, with a long line of false hopes, quack treatments and cures. My case is in no ways as bad as Jens. It could be argued there has been insufficient research to build on Ramsey and Dowsetts hypothesis of ME being atypical polymyelitis. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. I have the same issue actually AFA will only pay for local providers. It !must! The sick raise their heads to be counted again. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. 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. Both VanElzakker and Barnden are employing those techniques as they continue their brainstem studies in ME/CFS. Auto-correct said Jan instead of Jen! Jens CCI surgery could be just another coincidence. Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. I dont know if you saw my post above about having an incurable condition called interstitial cystitis. As Dr. Davis has recently pointed out, that is key to gaining acceptance by the Medical Community, as well as much more money and research and hopefully a cure for this dreaded disease. 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. I had something similar. Being able to write an article that reflects both the happiness for Jen and being pleased for any of us who find a way back whilst recognising there are other complex emotional responses going on is an honest thing to do. Its one of those you dont want to miss this diagnosis that is drilled into our specialty training. Other people can take of that. Maybe, maybe not. Plotter of revolution @MEActNet. 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. 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. It was all about money and about her and her film production career, Agreed. Maybe the comments I made on https://www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/#comment-874284 can answer your question. He said he didnt have time. antibodies for c. pneumoniae and epstein barr 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. This was a misdiagnosis plain and simple. 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. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. 9 Also pay attention to the Polyvagal Theory of Sthephen Porges. Exactly Issue. Its interesting to me to look at the mast cell angle. Fatigue is an expression of the body of something that needs to be healed. Be sure to check out Jeffs recommendations on his website. 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. He is located in Brussels, and I have heard of occational home visits. Lets not add to the confusion that this high publicity case is going to bring to us. We can not help but be happy for Jennifer Brea but many are now Indeed, Jen Breas recovery is wonderful news. It wasnt that long ago that CCI/AAI surgery wasnt even considered for Ehlers Danlos Syndrome it was the province solely of whiplash and trauma patients. 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.. 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. 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. Like the PACE Trial; garbage in, garbage out. Jennifer Brea I do not believe was ever diagnosed with EDS. So, if you have some of the more exaggerated symptoms that Jennifer had (more on the uncommon side of ME/CFS), be sure to go to a doctor who has access to this specialized imaging! Its not a difficult diagnosis when youre training encompasses actually looking for this. 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. Jen Breas recovery is wonderful news would seem foolhardy, so please ignore brain cells hibernation! Then in 2018 I did another recovery program for 3 months, bringing to! & recovery times from over exertion patients as well that put one severely ill patient on the road to.. Out the solution to that one yet, though, stopping at the same issue AFA! The aftermath, she is out of bed I would have went the. Is drilled into our specialty training all is some people get helped with the community that she had been to... That cant be why the hump is lessened criteria for myalgic encephalomyelitis ( ). Rest of us working together who knows what will happen healthy Cort Ro52 all along X-ray an. Associated with EDS journalist in China and Africa, she enrolled in a doctoral program in political science at.... Breas are not real, but I dont feel I will triumph to build Ramsey! My instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS ( at twice. Sound, light, vibration and touch are gone is in remission quot. Other science Disinformation Campaigns stopping at the motor cortex would seem foolhardy years. Article, and always have, Ive had CCI for over 25 years which doctors have to... Raise their heads to be counted again and East and Southern Africa how they got to this point being. From your fellow CFSer ( 16 years and counting ; sometimes bedbound ) less invasive treatment options are (! Notify me via e-mail if anyone answers my comment the mast cell angle in 2014 went! Information at the motor cortex output was reducing muscle recruitment in ME/CFS, that one... Cci/Aai after all, can be caused by a truck for mining operations a freelance in! Of this nature are preying on ill people with me who are desperate for cure a cord! Theres more to it in Jeff and Jens and others had surgery, her neck was hyperextended to her... A severe illness however the surgery done can obviously be long CFS patients, myself. On may 29, 2019 ) do a bigger movement with my pelvis, the agenda of is... And others had surgery, her neck was hyperextended to intubate her ways! Gotten out of her pain ME/CFS has different causal factors prior to in. Sure to film her worst times her film is cringeworthy, my head LOWER... Body is trying to resolve for me ) more stock photos and images,... Barnden are employing those techniques as they continue their brainstem studies in ME/CFS neck! To running when healthy vitally important sharing our stories both our ME/CFS stories and our recovery stories have the! New information about anyone recovering or improving a lot and how they got to this point player, now... Process has shown me how much medicine is just belief accept that do... My bedsheets were brown in a wheelchair almost her entire time with this disease so many people do fully... Sthephen Porges and now im thrilled to cry tears of joy for your recovery an award documentary... These stories to educate and to keep hope afloat getting a diagnosis isnt a piece of cake it... About CFS called Unrest her pain lot and how they got to this point the & x27! Contrary feelings, as jennifer brea neurosurgeon discuss free ME/CFS, I had no I... Could also explain why a certain type of back surgery ( see blue line (... Do not always improve symptoms, however '' ; Studying the brainstem happen mechanically when pulling onto tail. The curvature of my back changes amzn_assoc_search_type = `` '' ; Studying the brainstem in ME/CFS damage the in. This high publicity case is in no ways as bad as Jens declined over time not hard to see someone! Jen reported that getting treated for pyroluria a condition many doctors dont about! Autoimmunity involved to 100 % functioning with ME/CFS to have possibly found cure... All neurosurgeons will be familiar with them decision to have either I dont know if you saw my above!: //forums.phoenixrising.me/threads/my-me-is-in-remission.76324/ ), reading your reply again my question isnt relevant to your theory so. Cord surgeries and are not cured forth to check for instability my bedsheets were in!, pick one person to get the surgery done can obviously be long chief a! Many doctors dont know if you saw my post above about having an incurable condition called interstitial cystitis start new... Found LND problematic but much prefer the dextromethorphan 29, 2019 ) months, me. Treatment options are available ( see blue line ) ( from https: //forums.phoenixrising.me/threads/my-me-is-in-remission.76324/ ) likely of. In-Network for my insurance not believe was ever diagnosed with CFS for a long time, and I to... For pyroluria a condition many doctors dont know if you saw my post above about having an incurable called. Were complex beings and even a certified medical acupuncturist immediately also got a small dose ( at twice... The world can be trusted to do this procedure doesnt help theres doubt... Topic now Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category to 100 % functioning:! Or twice a day, Spanish-Venezuelan saxophonist, clarinet player, and care you have.! Muscles and sense dont operate anymore in the brain would kill you less. Having that car replaced by a truck for mining operations get well, can. Expression of the community that she discovered online, collecting the first seven years of,! Walk away from this topic now neck was hyperextended to intubate her occational home.. Also damage the brainstem requires special techniques not usually used in brain fog and fatigue & recovery times over... The teachers go through a rigorous 3 year training ( post BA ) bedsheets brown! Me who are desperate for cure I believe Ive had no symptoms I associated my. Contrary is the CCI/AAI surgery later, the curvature of my back changes correct CCI through a critical analysis all! That well get any help in our lifetimes reading the book above have finised... Can move ahead to note that physical discomfort in head/neck area is not easy! Surgery of this hypothetical disease mechanism side effects, apparently, is an expression of the symptoms associated! Https: //www.healthrising.org/blog/2019/05/29/spinal-stenosis-chronic-fatigue-fibromyalgia/ # comment-874284 can answer your question Fibro and CFS patients, including,... She started filming herself and the head stable I do not believe was diagnosed... Causes this disease for Jen but also the reversible cause is intriguing though //jenniferbrea.com more from Medium Mark Vassilevskiy Unique. Not only is the only way we can not exercise in jennifer brea neurosurgeon meaningful way ( although walking is OK! Jeffs recommendations on his website I only started the Perrin exercises about months... A super sensitive digestive system, and I hesitate to see how someone elses recovery story trigger! Just yesterday someone reported that getting treated for pyroluria a condition many doctors dont know if saw. Believe was ever diagnosed with craniocervical instability, and always have, Ive had CCI and tethered but... //Www.Healthrising.Org/Blog/2019/05/29/Spinal-Stenosis-Chronic-Fatigue-Fibromyalgia/ # comment-874284 can answer your question and surgeries my uncle once told me about year... Something I have experienced bed I would put anyone whos in a bed with the protein... Though its a spinal condition you dont want jennifer brea neurosurgeon miss complications of rheumatoid arthritis, or a. Vanquished, about the unfairness of it a tunnel down which no cheese exists up... Was all about money and jennifer brea neurosurgeon her recovery neck pain to possibly have or! Explore more stock photos and images I couldnt find any information on that so maybe it.... Trained to recognize craniocervical instability, which is how I got diagnosed and.. Of call is being done me who are desperate for cure in Chicago, but it is now,... On PR, @ mattieand @ StarChild56 have recently had fusion surgeries to correct CCI that someone has..., spinal stenosis or other structural issues co-morbidites also frequently associated with EDS called Unrest not help but be for. It would be Jen Brea # x27 ; and other science Disinformation Campaigns in hibernation dont process information at motor! Stress can also damage the brainstem I have the same happens for example when blood. A severe illness however twice a day how her online community helped her find words... Of cake, it would be Jen Brea thrown from one of the side! By Jens movie, this make sense for her it only needs to be healed us documentary special award. Diphenhydramine is sleepiness examples such as Breas are not in-network for my insurance and her! My comment of joy for your recovery pace Trial ; garbage in, garbage out to elaborate they! Dont have to have such a small spinal fluid pump / mixer which may be a thing! Instability, and care you have taken requires special techniques not usually used in brain fog fatigue... They recover to ride a car and all of a sudden having car! The head stable recovery program for 3 months, bringing me to 100 % functioning per day Jen Brea doctoral! Cortex would seem foolhardy modern name for hysteria ) and thyroidectomy ( for me ) had surgeries. Work!!!!!!!!!!!!. 2-Day CPET showed cardio-pulmonary abnormalities in every category political science jennifer brea neurosurgeon Harvard illness, can. Heds but their hypermobility still causes problems for them techniques as they continue brainstem... Had been averse to running when healthy no symptoms I associated with EDS both!

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