jennifer brea neurosurgeon

I went from 40% functioning to 60%. 1) Why are millions of people exposed to the same viruses, toxins and pathogens but only a few go on to get ME? Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS, 20 patients now found positive for CCI / AAI, there must be many more, Tracking CCI / AAI MRI & Treatment outcomes, Regenexx for craniocervical instability: my experience, Pursuing CCI/AAI, have questions, former high jumper & figure skater. I imagine there may have been quite a blockage there. I was told I had anterior osteophytes on my cervical spine along with arthritis. Jennifer Brea is an American documentary filmmaker and activist. Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). amzn_assoc_theme = "light"; Surgery was the only option for Jeff and Jen, but its not for everyone. His partner, Dr. Chedda, now regularly checks for CCI/AAI. 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. 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. I think CCI is just one way mechanical issues may manifest, but it gives us a clue to the importance of head, neck and spine mechanical issues in ME in general. Thanks! Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. Every bad turn this disease gave me went hand in hand with randomly losing certain factual memories and certain abilities, both mental and motoric. That does not mean similar examples such as Breas are not real, but are the exception. I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. I wonder if a move is in store? She was also a caregiver and an advocate from the beginning of the AIDS epidemic. Jennifer Brea is impacting the world for people living with the invisible disabilities, M.E. So sorry to hear that Deb. They give me antidepressive pills I wont take. I have a mild chiari that is not obstructing flow but what happens when I have inflammation? The saying goes, Where theres a will theres a way, right? My suspicion is that its such a small dose (at 10mg twice per day am and pm) that any sleepiness is negligible. 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. The first thing is that the tail becomes a bit longer but a lot more narrow so its volume goes down. Two things happen mechanically when pulling onto that tail even a little bit. Nor could I ever feel any envy. Finding one or more such core problems necessitating pro-active hibernation and solving it could in such cases yield near full recovery with very few permanent damage left. They have a specific focus on the neck. 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? It makes me unbalanced as there is so much to relearn and few usable time and energy. Matties CCI/AAI surgery three months later, Tracking CCI/AAI thread on Phoenix RIsing, Be sure to check out Jeffs recommendations on his website, The Brainstem, Vagus Nerve, Neuroinflammation and Chronic Fatigue Syndrome: The VanElzakker Way, brainstem nuclei to other nuclei in the brain, Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? Conversations, once vanquished, about the unfairness of it a tunnel down which no cheese exists show up again. https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. Jen I just really hope it works, and not only longterm, but for the rest of your life. 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. But Im leery of these fixes. 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). It is more likely that her recovery is a coincidence rather than her diagnosis having been wrong. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. I highly encourage folks to find physiatrist in their area if they have them. 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. We worked with the best in the field. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. @Kim Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case. These symptoms may include allergic-like symptoms (skin itching, flushing, hives, or anaphylaxis); gastrointestinal symptoms such as bloating, abdominal pain, diarrhea and/or constipation (often diagnosed as irritable bowel syndrome), heartburn, reflux, and difficulty swallowing; connective tissue symptoms such as hypermobile joints and scoliosis (often diagnosed as Ehlers-Danlos syndrome, hypermobile type); heart symptoms such as a racing or pounding heartbeat or blood pressure swings sometimes with fainting (frequently diagnosed as postural orthostatic tachycardia syndrome (POTS); as well as behavioral problems. This surgery is extreme and I hesitate to see it as a cure for most of us. Jen never had ME/CFS. It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. 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/). She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. Jennifer Brea is a filmmaker who suffered with CFS for a long time, and made an award winning documentary about CFS called 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. Cort, I dont think Jennifer was ever an EDS patient. Traction is very dangerous in CCI. BUT, three months ago i started an anti-inflammatory diet (no sugar, no gluten, few carbs) that just changed the game. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. While getting a diagnosis isnt a piece of cake, it can and is being done. Hey Cort! Plus, other less invasive treatment options are available (see below). I had 3-level spinal stenosis surgery with fusion and decompression 5 weeks ago and am wondering if this might give me an ME improvement/recovery? Lets instead spread realistic hope that there are answers, varied as they are, to our collective suffering. Its not a difficult diagnosis when youre training encompasses actually looking for this. Moderate to severe ME equals to severe to devastatingly severe illness IMO. 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. I thought about this during the movie. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. Ask the doctors in UK who have stayed true to what ME is. June 1st will mark one year since my full recovery. There is a huge emotional adjustment that comes with recovery, especially after decades of illness, but for me that journey is a beautiful unfolding to becoming my new self. What is very different about the Ayurvedic training and Western Medical Doctor, is as you alluded to calling a symptom or collection of symptoms a definitive disease. Dr. Jennifer Brey, MD. As an Ayurvedic physician I can help people unhook their identities from their suffering and heal. I can understand the objection, but I wouldnt call Jen Brea case a misdiagnosis. he is still going in his support for people with ME/CFS. However, not all neurosurgeons will be familiar with them. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. Now today, my neck hurts everyday especially at the base of my head. We BOTH had neck symptoms only after dental surgery (for him) and thyroidectomy (for me). At the beginning of May, a 26-minute trailer for the movie . It really helps pull together all the threads! I'm now in full remission. If someone else would like to use the forms or scales he used, please let me know and Ill provide them when I am able. He thought probably various viruses were responsible. If one can tackle a dominant ongoing driver of the disease one may have sufficient self healing left IMO. But if it would make it more flexible (or allow better spinal tail deformation) then this spinal tail puling should result in a bigger effect in the above three parameters. : Jennifer Brea, from her Medium.com blogs Thyroid Surgery And Aftermath In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. The Spinal Series Pt. 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. When the fever lifted, she was left bedridden, dizzy, and despondent. Jeff anyone who have consulted with Dr Bolonesse help confused! I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. Both were classic ME patients with all that implies (post-exertional malaise (PEM), viral infections, MCAS, POTS, sensory sensitivities). Sinus surgery proved the cure for Diane. All possibilities to heal should be pursued. Could Jen and Jeff and the 20 people on Phoenix Rising who have tested positive for CCI/AAI be the ME/CFS wing of CCI/AAI? Narrower everything? Her POTS disappeared in March. I will not give up. My new doctor says he thinks I had the Jo-1 and Ro52 all along. 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. Hi! Ive been working on intentionally breaking that suspected cycle at multiple points within it all at once whatever parts I can most easily get my own two hands on and have had far more success with that approach than my previous, more scattered, attempts.). 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. Studying the brainstem requires special techniques not usually used in brain imaging. 1 2 43 Jennifer Brea @jenbrea Dec 8, 2021 The money issue raises its head no surprise there really. That will alert other doctors to this issue and provide the basis for grants to study this more. 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). I felt uneasy writing moderate as well. 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. It seems to bring balance back to the sympathetic and parasympathetic nervous systems. It was really hard to read. Even if you dont have CCI/AAI, the search for it may help uncover other problems. If so, might I ask who performed her surgery? Again, none of this has been a cure but with pacing, infection and stress avoidance, and staying within preset limits (total daily steps and anaerobic heart rate), Im less sick and have an improved, albeit still limited, quality of life. If so, how.Thank you. Jennifer Brea 2.8K Followers Maker of @unrestfilm. That plus certain types of medical marijuana have definitely helped. I cannot emphasize this enough, especially for chiari! Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. 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. Also last year, I bought one of those bed bases that lets you elevate your head and/or feet. One of these docs talked to me about people like us having angry or unhappy brains and he can do procedure on someone and they have major improvement and on another and no major improvement. Is that possible? One liter of saline x5 week dripped slowly at night took away flu like symptoms. Keep getting better, advocating, and now enjoying yourself! Jennifer Brea: I have craniocervical and atlantoaxial instability. There are 21 other people named Liz Delany on AllPeople. That procedure sounds about as spine-tinglingly scary as anything I can imagine. Amy, if you have the possibility in your area, look into Alexander Technique. I existed within my own bed, within my own mind, playing with ideas in a race against time. She saw a world renown surgeon and we are very happy with the surgery. Im going to try to walk away from this topic now. And, again, this would also fit in with the prevalence of ME in the EDS population. 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. While there are certainly cases of gradual recoveries using supplements, pacing, and mind/body practices, many of the recovery stories involve unusual, out-of-the-box treatments. wrong country. It also did a number on my lower back. This also could explain all her symptoms and maybe her recovery. Jennifer next went to Scotland to pursue fellowship training in general neurosurgery, complex spinal surgery and paediatric neurosurgery (1998-2000). Parasym Plus is a supplement that I take. Sounds like a case of misdiagnosis to me! 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. Maybe not probable but at least possible. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. Best regards But when one practices diaphragm breathing it happens over 10000 times a day. 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. 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. youve forgotten them or they are lost to you. My name is Jennifer Brea. Sheeze wish Jen Brea would stop messing with ME. Theres so much education that is needed on so many different fronts. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. Im luckily rather immune to that. Contact info: (215) 895-2808, efd22@drexel.edu Find more info on AllPeople about Liz Delany and Drexel University, as well as people who work for similar businesses nearby, colleagues for other branches, and more people with a similar name. It makes sense as those are computational far far less complex to do. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. If you were a betting person what odds would you have put at that happening? For more info call me at 650-868-0603, Hi! Wouldnt it be nice if it is as easy as getting a neck surgery to recover from CFS? nice article; good perspective in the article and comments on cures, remedies, recoveries message of hope keep trying, everyone! Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. Do NOT take any other acetylcholinesterase inhibitor, in any form, while taking this supplement since HupA is a VERY potent drug. Her symptoms caused by the brain stem compression & tethered spinal cord were just very similar to the symptoms of ME/CFS, she has surgery to correct the spinal & vertebrae/brain stem deformity & all the symptoms have gone!! Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. I can do occasional spurts, but exercise of any intensity other than slow walk for more than a few minutes at a time definitely cause PEM for me. So I learned to go back to the basics each time that happened. She can bend her hand flat on her arm. 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. I know MS research (another illness largely effecting women) is also looking at structural stuff in the head and neck. 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. Tip! 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. But if people are having improvements from cervical spinal stenosis surgery, why would we not count them all together? Jennifer Brea's Medium site - , Jennifer Brea, the creator of Unrest and the cofounder of ME Action, details her craniocervical instability (plus) story - plus provides reviews of spinal study findings that could apply to ME/CFS. What was cloudy yesterday may become clear today. Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. 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. I am slowly getting improving, but it has been several years now and I am nowhere near 100% It is very discouraging at times as I used to be a highly active person, Encouraging story, but shes not totally recovered. It shows how variable this all is some people get helped with the opposite practice. * The brain part of the spinal fluid bag sees each breath a wave of contraction / expansion or more pressure / less pressure. This is such an obstacle that it almost makes me wish Id never heard of CCI! I have the same issue actually AFA will only pay for local providers. 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. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. My days are now filled with thoughts about life, not illness and symptoms. The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. 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. By 2012, I progressively lost the ability to read, think, or walk. In it, bone marrow concentrate (BMC) containing a stem cell fraction (same-day stem cell procedure) is injected directly into the lax ligaments. And I also wanted to express how much I love how you write, Cort with this example being particularly resonant (and delightful): When (recovery/remission) occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. The Japanese have echoed that general idea. low vitamin D. Try to make sense of that (because I cannot)?! Best of luck! I am absolutely thrilled to hear such wonderful news! 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 . But people should have support and pace through these studies and surgeries. I think its a shame that folks with ME/CFS have been convinced that there is no cure or theres no hope. Who knows what will happen if the nanoneedle provides a diagnostic test? Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. So glad some are helped, but its not something to jump into without lots of research. I find that quite annoying, but hey. I have no clue if this surgery makes the neck and spine more flexible or more rigid. Valcyte did the trick for Kate and her 25 year struggle with ME/CFS. A word of caution. a physiatrist (pain doctor) reported that physiatrists are trained to look for CCI/AAI. When it occurs, it often occurs using nontraditional approaches found teetering on the skinny branches of the medical system. The surgery itself is very harsh to the body. I didnt get anywhere. The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. Jennifers) aids recovery because somehow the procedure enables toxins to drain away from the spine and brain? My symptoms start after I do too much work/exercise that includes my shoulders and neck. The other thing that happens is that the tension in the brain part of the bag rises a bit. If he didnt write it up, how many others didnt either? The fact that 20 people on the Phoenix Rising Forums have been diagnosed with craniocervical instability/atlantoaxial instability (CCI/AAI) over the past 8 months or so is remarkable, and suggests that the condition may not be as uncommon as one might think. Everything felt to me to be systemic. 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. After graduating from Princeton University with an AB in Politics, she was a freelance journalist in China and East and Southern Africa and a TED Fellow. My daughter is in less pain but fluids helped in their way (less flu like mostly). She started filming herself and the community that she discovered online, collecting the first footage of what . I cant sleep (for years). Sleeping in a bed with the feet elevated and the head down in theTrendelenburg position can help. Shes been in a wheelchair almost her entire time with this disease. 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. 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. Sorry, Issie, not Issue. If you really think you have CCI, go to a if you really think you have cc hi, go to a neurosurgeon. It is from this experience that drove me on to, in very short, to become a Ayurvedic Naturopath and then medical doctor and work with people with the incurable . I can work now. However, these policies are limited to in-network providers and facilities. With moderate brain fog, in a way it seems a cruel joke that I am the one who has to research and make sense of these things. 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. Way to go Jennifer! I hope not. To his surprise he met the criteria. Wonder if the two are connected. If I could choose a way to recover which I obviously cant neurosurgery would be one of the last options on my list. Jennifer Brea is an independent filmmaker based in Los Angeles. She had put off having this surgery until after the promotion from "Unrest" was over. I just bought an infrared light machine for my husbands arthritis. I have insurance, but it is in-network only: the surgeons who perform this operation are not in-network for my insurance. Just think about how you try to get stuck objects unstuck: not by keep pushing onto it but by alternately push fort back forth back. These people fought and triumphed. Although things arent easy for me, I consider myself quite lucky (so to speak) in CFS terms, knowing how many sufferers are sadly much worse than me. Surprisingly, I find I sleep best with my legs higher than my head. That helps removing waste out of the brain. Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. I never fit cfs criteria as my sever fatigue only lasted a few monthsbut i am always fatigued..just not in bed full time like some. Brea, Jennifer (May 20, 2019). Since valacyclovir those symptoms are not near as severe. It amounts to success for everyone that I have worked with. Also from SCIG and IVIG when autoimmunity involved. The people said it was very lucky. 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. She ditched her wheelchair seven weeks ago. That being said it is my hope that you can put your forces behind the search for a biological marker. In 2014 I went to Workwell and my 2-Day CPET showed cardio-pulmonary abnormalities in every category. and am even sobedridden I could not go to see a specialist or getting at a hospital. She didnt have ME and i found her film attention seeking. She doesnt appear to have ME/CFS anymore, though, and in six months, she may be completely healthy. 1946 - Benjamn Brea, Spanish-Venezuelan saxophonist, clarinet player, and conductor . (Plus, few years I took anticeptive pills for a while, and I got worst, so need to share that too! If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck and most likely not MECFS. (herpes 4 seems to be the current candidate). I was born sick (MMAS), my brother was born sick (mastocytosis) and my son was born sick (MCAS). If you cant access Mestinon, you might consider trying the nutritional supplement Huperzine A. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. 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. Can you make a correction to your article? I immediately had changed in functioning and energy. I would put anyone whos in a wheelchair as having a severe illness however. amzn_assoc_default_search_category = ""; Im in awe of what both of you have achieved. It improves the function of the vagus nerve and also peripheral muscle signaling (muscle fatigability)at least it did in my case. The fact that the damage correlated with autonomic nervous system problems suggested brainstem problems could be affecting exercise, sleep, the gut and cognition. 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. Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. Jean Bentley Dec 7, 2017 4:20 pm @. It helped with pain and some symptoms. Im so happy for Jen and excited to see where she lands. 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. 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. So many people have had CCI and tethered cord surgeries and are not cured. I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. Saying that a viral onset causes this disease it too short of an explanation. Please note: You may need to reduce your dosage or cycle off it periodically if it becomes less effective. Thanks again for this coverage of an important topic. Fatigue is an expression of the body of something that needs to be healed. 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. I take it at night Help me fall asleep and most of the time sleep through the night . From someone on the Cusack protocol FB group: Hypermobility disorder is diagnosed when the symptoms are primarily joint related. I sleep much more better, not perfect, but fine most of the nights. multi- and mold-susceptible genes Good luck and keep the hope up . I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care. This was a misdiagnosis plain and simple. 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. also people like her with plenty of money can access all treatment s. The top docs are only available to the rich, Im amazed people here cannot see that, the majority suffer and the rich can see any doctor. A chronic illness or disability can affect an adolescent in many ways: Complicating their development of independence Interfering with their connection to peers Introducing a new set of emotional conflicts during . Jennifer Brea was a PhD student at Harvard when, one night, she found she couldn't write her own name. 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. 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. I have mild CFS, I work full time, but its tough. You never know! Would you share the Hyperzine product thats working for you? She has major problems with neck instability, swallowing difficulties, vertigo, nausea, nystagmus, being over whelmed with thoughts, anxiety, fear, She suffered a lot of trauma from the medical system here in New Zealand. Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. Looking forward to hearing the results of his study and of the herbal study. I couldnt find any information on that so maybe it doesnt. Why you should listen. 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. But the other hand is less delightful. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. Thanks so much Cort. The surgery did nothing for me. 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. "My neurosurgeon looked at 250 patients (primarily patients with #EDS) who had craniocervical fusions for CCI between 2012 and 2018. Jeff, Mike Dessin, and the heavy metal poisoning patient were more similar to Whitney Dafoe than your run of the mill (but still incredibly limited) ME/CFS patient and yet they fully recovered. I had an Austrian physiatrist, who would probably be over 100 by now, and she was amazing. In fact, the tryptase from the mast cells will likely continue to degrade the collagen, to my understanding, so such a surgery would only be a temporary band-aid for *some* symptoms, not all. Not one doctor of have seen has reported anything. My case is in no ways as bad as Jens. I wish you the best! The body !must! I think I am going to pursue this neck thing, return to PT for my neck and maybe try a cervical collar. Jennifer Brea Wiki, Biography, Age as Wikipedia. It can be grueling and I was exposed to a lot of medical trauma during our three plus year investigation and not from the super specialists but from all the gate keepers, all the ruling out docs and their people. Each episode of CFS would start out with cold sores, sore throat, severe fatigue, sleep disruption, achy joints and muscles, etc. Joint hypermobility with its possible complications is now classified using the idea of a spectrum. I think theres more to it in Jeff and Jens case. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. We are lucky shes still alive. Certainly her CCI/AAI diagnosis is now the correct one but its interesting that neither her nor Jeff fit a typical CCI/AAI diagnosis either. What really makes me angry though, is that even if you are privileged enough to live in the US, you still need top notch insurance and a huge amount of money for what insurance wont cover. 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 problem is not someone becoming well but the shadow that recovery casts on our current situation. Also EDS tissue can have a tendency to stretch and droop out of position. http://jenniferbrea.com More from Medium Mark Vassilevskiy 5 Unique Passive Income Ideas . Thanks Nancy. Im still waiting ?. Pt I The Brainstem Series. 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. What is it that makes people not want to believe recovery is possible? I hope that doesnt happen again. Thank you. With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. In 2011, I became suddenly ill after an acute viral infection. Oh Brigitte, I am so sorry. The people said the warrior was unlucky. Ill leave Jennifer and others to judge upon how it affects them. This is most likely from tryptase which acts like a meat tenderizer. Sorry Dejeurgen, reading your reply again my question isnt relevant to your theory, so please ignore. https://www.healthrising.org/blog/2013/06/16/heads-up-are-you-missing-an-easy-way-to-improve-sleep-and-health/. She was in Miami dealing with another project while coordinating and gazing in the film Unrest. It has also caused to wonder about my own possible CCI. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. I think the reason that I have problems emotionally with recovery stories is the same as the reason I cant watch inspirational stories on the news. @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. One quick clarification: I didnt have overt neck symptoms until after my thyroid surgery. It means we get to debate whether she really was an ME patient, whether she purely and only was an ME patient, or whether she was ME + HSD. He made a conscious effort to use his journalism background and reputation to arrange appointments with key Government decision makers. Doctors are still in the mode of one-cause-one-disease. 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. "Health update #3: My ME is in remission". However the cause of vagus nerve and peripheral nerve signaling problems were my two structural, neurological problems: CCI/AAI and tethered cord. EDS does run in his family. 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. The muscles sometimes arent strong enough to hold the head stable. She is an amazing and resourceful woman and she worked bloody hard and endured a lot to get her break. It was all about money and about her and her film production career, Agreed. She describes how her online community helped her find the right diagnosis. Thanks. Most neurosurgeons arent trained to recognize craniocervical instability, and finding an imaging facility that does the right kind of scans can take time. I also wonder how many men with ME had suffered a traumatic injury to the back or neck at some point prior to becoming ill? Initial symptoms: June 2008 a sharp chest pain event, thereafter wild neurological symptoms in limbs and head, extreme post-exertional malaise, cognitive fog and unrefreshing sleep. 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. I think Europe has a stronger tradition of (and gives more value to)physiatry. Each of these could trigger a different (and less invasive) treatment approach. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. Im very happy for those who benefit from surgery but a new diagnosis may just add another name to my long long list. There are still the vagal sympathetic synptoms and the neck pain. I feel no love lost for her as she did nothing in Australia but promote herself and her film with no real support to the 250,000 sufferers DownUnder. Also in terms of severe, moderate, mild these are relative terms. Whatever kind of CCI/AAI she had, it was different from what hed seen before. The symptoms are VERY similar to many of our ME CFS symptoms. There it can help moving blood in the capillaries (as CBF pressure should mechanically speaking help determine amount of blood flow in the brain) and even better help removing debris in the capillaries as oscillating movements often are better at getting stuck debris unstuck. Ron Davis and to some extent Naviaux believes that in many cases this danger is long gone and hence the hibernation is wrong and should be reset. I was incapable of seeing, walking straight, or talking right some days but yea not serious enough. If he did test positive I wonder if a) he could get to a neurosurgeon and b) if he could survive the surgery! It has helped a lot with my pain and function, though not a cure. Shes lifting light weights for 30-90 minutes and getting stronger, not weaker. amzn_assoc_bg_color = "FFFFFF"; The information found on Health Rising is mostly put together by people with ME/CFS and/or FM. I remember her horrific case now. 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. One of the key side effects, apparently, of diphenhydramine is sleepiness. Our disease is very diverse. (My words this is technically called asymptomatic localised or generalised hypermoblity) At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD) (my words these are symptomatic HSD), HSD are likely to be common. She also helped to found MEAction and has fought for recognition for CFS. From 2012 to 2015 I used a Lyme and heavy metal treatment program. I'm here to answer your questions! The teachers go through a rigorous 3 year training (post BA). Around 2000, a group of Fibro and CFS patients, including myself, were diagnose with Arnold Chiari Malformation. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. amzn_assoc_height = 250; 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. 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. Some people with ligament laxity have improved usingthe Cusack Protocol. Maybe it does then. It is not a cure for everyone and I am not sure what was cured here besides the targeted outcomes. 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. The NPI number of Jennifer Brea is 1770123416 and was assigned on January 2020. Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). That was probably due to improving the flow of pooled blood in the legs to the hart. The difference is important. Compare it to be used to ride a car and all of a sudden having that car replaced by a truck for mining operations. Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. Jennifer Brea I do not believe was ever diagnosed with EDS. This has happened maybe 8-10 times in 7 years. Thats how genuine he is. A huge waste of money. 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. 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. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. I remembered Jennifer Brea recovered from CFS/ME after spinal surgery, so maybe the surgery helped toxins to drain away from Jennifers spine, thus leading to recovery from CFS/ME? 9 There are upright MRIs with flexion, extension, and rotational views, or supine CT scans with flexion, extension, and rotational views or 3Tesla supine MRIs. The problem with doctors is the way they think. Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. 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. That means the diagnosis should only be made if after a rigorous and complete workup, there is no known cause for the patients symptoms. 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. Like the PACE Trial; garbage in, garbage out. amzn_assoc_region = "US"; 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 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 . I absolutely feel she should not feel any guilt. Its going to get really interesting! When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. 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. 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. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. It will certainly show up in future blogs. 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. Huperzine A caused tummy issues with me, as did mestinon. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. To know a real recovery story from cfs and ALL illnesses without any medication and surgery, check out Julia On Health, Ive just finished watching Unrest which is how I came to this site. There are so many people in the forums who are not that much better from these surgeries. Whoops! At least now, she is out of her pain. I know this is how ME started but its been decades and were no further on the atypical poliomyelitis front. For the majority of her career, Julia has been committed to public health and advocacy. amzn_assoc_placement = ""; My question is why was I constantly told you have CFS and there is nothing we can offer but GET and CBT.. Reduced brainstem grey matter volume suggests that the neurons in the brainstem may have been damaged. After other possible conditions are excluded, a diagnosis of generalised hypermobility spectrum disorder may be made here. So is the muscle twitching, the air hunger, the restless legs, the brain fog, the short-term memory issues and the flu-like symptoms, For the first time in eight years, shes walking for exercise and, well, for the thrill and joy of walking. 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. amzn_assoc_search_type = "search_widget"; But, because of his broken leg, the warriors son was left behind, and so was spared.. Recovery stories bring up a mix emotions for me, as well. This type of surgery is absolutely not an appropriate treatment for illnesses such as ME. She will not pursue the tethered cord surgery because of that. Dr. Nigel Speight, is one . I was diagnosed with CFS about a year ago, after several years of struggle. amzn_assoc_link_id = "YV25CNBNF26YD2J5"; So, its a matter of reducing the amount of nickel. She was playing to be seen to do the right thing but in fact didnt. Jennifer Brea is an American documentary filmmaker and activist. He didnt consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. A 2003 study suggested that reduced motor cortex output was reducing muscle recruitment in ME/CFS and causing fatigue. After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. We stopped before looking deeply (pardon the pun) into venous stenosis in brain. She has been diagnosed with hEDS. When I initially became ill, I had a lot of testing done. Thats despite that I am a mild/moderate patient who can walk 2 miles on a good day as long as I incorporate enough breaks. What an unbelievable relief that must be. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. [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. You mentioned getting the proper imaging for diagnosis. But it is just too hard to imagine that given what we already know of CFS and its known risk factors. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. And she had suffered from PEM which most of us CFS patients consider a hallmark symptom. My ME is in remission. I used to have ME but it is now gone, thanks to neurosurgery. Lets go back to Naviauxs research and Ron Davis comments on it. So absolutely nothing is lost by knowing this new information, except of the hope for a quick, easy and simple solution for the masses of us. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. Im constantly disappointed in my colleagues in their inability to rule out and hunt down all possibilitiesand find something that could be treated and healed. So I had to learn that component by doing it slowly, observing how it went and how it felt and repeating it. The main thing I know is that NO ONE ever had the slightest intention of solving They should be checked immediately to avoid years of disability because treatment exists for many of these problems. For me, toxin buildup in the central nervous system certainly makes sense. I did it because that is how Jen described herself. It wasnt my answer. With it, the line of my spine and the surrounding tissue gets contracted or expands a little bit. I also sense something similar with chest breathing but to a far smaller extend so its vague. I found them after PT worsened by double cervical herniated discs, a few years ago. Mast cells are the master cells of our immune system and can recruit the other immune cells into action. so I am desperate, said and angry to. All of this was noted in August of 2008 two months after my initial event on June 8, 2008. Many cfs suffers like her, seams recovered but actually more problems are waiting! In just three days of evaluating me, based on the new imaging . Cort, A lot of us are going to have these presentations or one of them or none of them because the SYNDROME presentation of Hereditary Alpha Tryptasemia (a mast cell disorder) and the SYNDROME of MCAS is: Hereditary alpha tryptasemia syndrome is a condition characterized by high blood tryptase levels, and by several symptoms associated with multiple organ systems. The interview includes a particular good discussion of the doctor and the decision to have the surgery. low pancreatic elastase I send you love and every wish that you will get help soon. 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. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. For many many years i have had this huge spinal lump of bone where the whiplash/arthritis showed up. Jen and Jeffs experiences are shining a bright light on a potentially very important, and until recently, little explored area of the brain the brainstem. So I was forced to an FMT; my last resort. I am also copper zinc imbalanced. glad for jen ofcourse. Not even Mestinon, an old and safe drug which Jen, by the way, found that helped her. I think the question of just what exactly is ME/CFS is going to come up more and more. I hope thats so! That wouldnt offer a single golden ticket to recovery for us all by having a single medical discovery. are being diagnosed with craniocervical instability, spinal stenosis or other structural issues co-morbidites also frequently associated with EDS. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. Decades after falling ill it was corrected. This is not an example of remission or a recovery from ME/CFS. Found 20 colleagues at Drexel University. I think that cervical spinal stenosis must be much more common than CCI but I dont know for sure. You cant for example just hunker down or hibernate if youve got a nasty gut bacterial overgrowth. Dr. Jennifer A. Talk about a head trip! I have had CFS symptoms several times a year lasting from 10 days to over 6 months. In wich country is it and what is physiatrist? Alexander Technique is big in the UK and the US, and probably Canada. I was a responder to these drugs and (and to mold avoidance). What Jennifers story tells me is that skeletal problems should be investigated much more and as a first port of call. As long as we dont know what causes and sustains our disease we cant say she never had our disease. (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available. Regenex is another procedure mentioned. Notify me via e-mail if anyone answers my comment. Jul 14, 2022 | By Jennifer Brea, Waterstones Winner | hashtagpress.co.uk *This book may take a few days to arrive as it's being delivered to the office*Release date: June 2020Young Adult Non-fiction MemoirPaperback ISBN: 978-1 . She knew her PEM was gone immediately after the CCI/AAI surgery. That expels some of the fluid from the tail into the brain part of the bag. Almost immediately I began feeling with more energy, clarity of mind and happiness. So maybe at the core of ME is pro-active hibernation with the body waiting out a problem it cant resolve all by itself but very actively trying to provide, restore, improve and replace vital affected functions just to allow us to survive long term and hopefully even do so with very few permanent damage. It could be *part* of ME and for some a dominant part. Medium. 2012 i again get hit from behind while at a red light from a full speed (50km/hr.). Brain scans provide the final determination. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. I had something similar. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. Congratulations and thank you for your work !!!! FIND SUPPORT Are you patient look for social support or wondering how to get diagnosed? At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. Three months post-surgery hes nowhere near healthy but he is no longer mostly bedridden, his POTS, dysautonomia, headaches and neck pain have disappeared and he has more energy. [4]" Truly is a diagnosis of exclusion. I am quite sure i have , also, PTSD. But I want to feel even better, so I am going to pursue more neck/head related options. Wesley Fryer via Flickr. Phoenix Rising Forums A 100 page plus thread exploring craniocervical and other spinal issues in ME/CFS. That said, my older family members all have significant forward neck posture. 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