Hope Jeff & Jen & other cases do get documented. There’s a potential dark side as well which Jen Brea alludes to – the survivor’s guilt for her of getting better while others continue to suffer – and possibly a feeling of getting left behind by those who haven’t recovered. 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. Pyroluria – Real Disorder or Figment? 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. Conversations, once vanquished, about the unfairness of it – a tunnel down which no cheese exists – show up again. Part of it probably is because improved blood flow means improved blood flow in the lungs as well and hence improved oxygenation. Dr. Bolognese reported that a treatment plan for craniocervical instability typically begins with things like neck bracing, activity limitation, physical therapy (including isometrics, core strengthening and cardio), as well as pain management. This neurosurgeon (who again, is not the neurosurgeon who ultimately operated on me — his is a different specialty) treats a wide range of the usual vascular neurological … For me, the recovery stories provide hope and are a sign not to give up, to stay curious, to keep reading and asking questions. Most neurosurgeons aren’t trained to recognize craniocervical instability, and finding an imaging facility that does the right kind of scans can take time. A word of caution. 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. Ann, you are so right. Hopefully we will get much more brainstem research. 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). So this makes me wonder if Jeff or Jen showed signs of MCD from the beginning. Sleeping in a bed with the feet elevated and the head down in the Trendelenburg position can help. 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. I have been trying to find someone who does cranial sacral massage but since I live in Hilo, I can’t find anyone who does it (at least correctly). They were different from the typical CCI/AAI patients. I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. “Borderline Intracranial Hypertension Manifesting as Chronic Fatigue Syndrome Treated by Venous Sinus Stenting” Chiaribridges reported that “the ideal tests to diagnose CCI and AAI are an upright MRI with flexion and extension (bending one’s head forward and backward as far as one can) and a 3D CT with rotational views, respectively. We should also remember how vitally important sharing our stories – both our ME/CFS stories and our recovery stories is. Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. 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. 2) Your muscles and sense don’t operate anymore in the way they used before. I remember her horrific case now. One person on the Phoenix Rising forums reported that she didn’t 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. She recently did an hour of water aerobics. If there’s x amount more symptoms it’s eds. Also last year, I bought one of those bed bases that lets you elevate your head and/or feet. His tour was at least factually backed and supported by many state and national advocates with whom he worked plus ME/CFS Australia Ltd who provided him with a thorough briefing on the situation here and key influencers.. A 2003 study suggested that reduced motor cortex output was reducing muscle recruitment in ME/CFS and causing fatigue. Other people can take of that. To view past faculty, click here. I cannot see not addressing symptomatic radiographic presentations and the good doctors know what to look for symptomatically and radiographically. One of Jennifer Brea’s most disturbing symptoms was the cessation of breathing whenever she lied down her head. Keep getting better, advocating, and now – enjoying yourself! The muscles sometimes aren’t strong enough to hold the head stable. However, and I state again, she was not an HEDS patient. The neurosurgeon drew a line from one side of the opening of my skull to the other. “from being able to remember and repeat physical movements after one or two demonstrations and having no trouble recalling them days or weeks later, to flat out forgetting them entirely within a few minutes. * There is a small but enduring cycle of spinal fluid being moved from the bag to the tail and vice versa. That kinda bites. Dear Cort I had something similar. If I could, for the good of the community, pick one person to get well, it would be Jen Brea. Many cfs suffers like her, seams recovered but actually more problems are waiting! Both Jennifer and Jeff sure do provide a clear story and path to recovery for their case. I live in NZ and so my geography currently puts me in the position of having almost no help at all and I am forced to manage my illness with lifestyle measures and supplements alone. 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 will not pursue the tethered cord surgery because of that. I went from 40% functioning to 60%. I had 4 episodes of viral thyroiditis before I had it removed. From someone on the Cusack protocol FB group: Hypermobility disorder is diagnosed when the symptoms are primarily joint related. If I remember correctly it basically lifted her head off her spine. I could hold my head up again. Jeff just interviewed Mattie three months post 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 she’s not totally recovered. Im really happy for her, even ecstatic, but it opened some things up for me. So I was forced to an FMT; my last resort. Hi Ruth I congratulate Jennifer as well as Jeff for obtaining such stunning results, results that were not easily obtained and demanded an uneven fight against this debilitating disease. Fast forward to aprox. Jeff will interview Mattie again in a couple of months. Apparently she had the surgery here – and then went to Dr. Bolonesse (sic) in Europe for followup surgeries which failed. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. Do we know of any MEEPS beyond Dr. Rowe’s three who have recovered or had major improvements in their ME after spinal stenosis surgery with or without fusion? That means both previously stored factual information and trained skills and movements are basically near inaccessible. Basically it’s do-it-yourself re-validation therapy like someone with brain injury would receive. If someone else would like to use the forms or scales he used, please let me know and I’ll provide them when I am able. In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a “rigid posture” and tense muscles wasting energy and more IMO. Jennifer’s case may be a good example of this hypothetical disease mechanism. Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many symptoms. That will alert other doctors to this issue and provide the basis for grants to study this more. 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. Is that possible? Neither are required. 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. They should be checked immediately to avoid years of disability because treatment exists for many of these problems. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. Mast cells are the “master cells” of our immune system and can recruit the other immune cells into action. I have issues and stenosis, but my spine doc doesn’t feel surgery is best option for me. I take one pill in the morning and one in the early evening. I certainly believe she more then deserves it. I’m fighting when I have the energy but I don’t feel I will triumph. – low testosterone (possible sign of infection?) Hi Cort- I can’t keep up with all the reading around this issue so I might have missed this, but will their case reports be published? Neither could have pointed to their head/neck area as a likely cause of their illness. – I don’t know if prolotherapy is an option for treating CCI/AAI, but it is used to treat ligament laxity which is found in CCI/AAI and a number of neck and spine issues. amzn_assoc_default_search_key = "";
We BOTH had neck symptoms only after dental surgery (for him) and thyroidectomy (for me). That’ll kill you within days. In 2017 I was found to have two antibodies, Jo-1 and Ro52 and diagnosed with Antisynthetase Syndrome (ILD with dermatomyositis) and Sjogren’s Syndrome. Whoops! It was only then that even started to look for anything and I still don’t think they took me seriously until the antibodies were found in 2017 and I still feel like I am told your symptom severity does not match what we are looking at for this patient population. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. That helps removing waste out of the brain. My difficulty swallowing remains unchanged but I was told if the osteophytes increased in size and I couldn’t swallow, I would have to have surgery. Thank you for using these stories to educate and to keep hope afloat. This is such an obstacle that it almost makes me wish I’d never heard of CCI! Past Faculty 2016Faculty 2015Faculty 2014Faculty You don’t have to have the energy for breakthroughs to happen. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. off of the brainstem. 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 won’t cover. Jen Brea makes two people with severe, apparently classic cases of “ME/CFS” who have recovered or are recovering after being treated for craniocervical instability (and in Jen’s case, tethered cord syndrome). I can’t even find the words to let you know how thrilled I am for you! The body !must! Enteroviruses (the first viruses associated with ME) produce enzymes called matrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. Dr Myhill describes ME/CFS as a collection of symptoms rather than a diagnosis. EDS is a difficult and painful thing. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. To add to the problem, we don’t always know what information is relevant and what is not. I broke my neck in 2000 snowboarding at Snow Summit in Big Bear. As an Ayurvedic physician I can help people unhook their identities from their suffering and heal. If we could find a way to create bone loss, would it take the pressure off our spines ..then we wouldnt need surgery. Alexander Technique is big in the UK and the US, and probably Canada. 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. I benefit enormously from neck traction-like interventions like the neck hammock. I have the same issue actually – AFA will only pay for local providers. Sorry, Issie, not Issue. nice article; good perspective in the article and comments on ‘cures’, ‘remedies’, ‘recoveries’ – message of hope – keep trying, everyone! Maybe they thought cfs was related to these outbreaks: https://www.betterhealthguy.com/episode98, I have found the article below very important and relevant to the topic. Haven’t we been through this before? 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/, Hormones (thyroid, testosterone, progesterone, estrogen, hydrocortisone), 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. 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. With my improved health, I will continue to fight alongside each of you for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. It’s so unrealistic for the rest of us to think that we’ll get any help in our lifetimes. This surgery is extreme and I hesitate to see it as a “cure” for most of us. Recovery stories bring up a mix emotions for me, as well. On his Mechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed – including how to get your scans into the right hands. The symptoms are VERY similar to many of our ME CFS symptoms. Create New Account. By 2012, after finding few answers and facing intense medical skepticism and neglect, I … I saw specialists, met all their clinical criteria, and went through extensive testing to help confirm the diagnosis. So it goes for many people who’ve recovered. This also could explain all her symptoms and maybe her recovery. Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. I haven’t read the comments above, it occurs to me that Jen would have failed the nano-needle (Ron Davis)/intracellular phenylalanine (Karl Morten)/mitochondrial fragmentation (Bupresh Prusty) tests. Not sure how available nutritional supplements are in NZ, but Huperzine A is well known in Chinese and Indian medicine. 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. I still suffer with fatigue and PEM but I can at least manage my symptoms better with this supplement. I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care. The Recovery/Recovering Stories section of Health Rising often triggers differing emotions – some people love them, others hate them. Bookmark Save as PDF According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake. To “Note that physical discomfort in head/neck area is not required! Jennifer Brea and husband Omar Wasow, source: medium.com. Since my accident I’ve had very few issues with my neck. Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll. My insurance is through the Healthcare Marketplace (ACA), and I’m very grateful to have it, as I was uninsurable prior to the ACA, being self-employed with pre-existing conditions. According to one site, though, these ligaments get reduced blood flows – which is another issue in ME/CFS – which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS. It’s not hard to see how someone else’s recovery story could trigger some issues. At an attempt to throw it all at the wall and see what sticks. I had a very long onset, starting with loss of very high functioning memory (both muscle memory and factual memory) approx 18 years ago, with PEM and more severe cognitive issues showing up 4 years ago. and not as referrable to any specific part of my anatomy for the vast majority of my illness. 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. 2) Why is there such a prevalence of women in the ME patient population? long story version coming soon. It is a rarer true allergy, but it is out there.This is another important point about ME/CFS. I have no clue if this surgery makes the neck and spine more flexible or more rigid. Subscribe @jenbrea, 18 tweets, 4 min read Read on Twitter. On the one hand, how wonderful to have possibly found a cure after 26 years of illness! I know few of the above. Sounds like I am like you Cort. Unlike Mestinon, it only needs to be taken once or twice a day. Doctors are still in the mode of one-cause-one-disease. She’s been in a wheelchair almost her entire time with this disease. Mattie, a web developer in the Netherlands, had a gradual onset, of ME/CFS in 2010 and slowly declined over time. I am increasingly finding it just as frustrating…even maddening…when people inside our community refuse to accept that people DO recover from ME/CFS. Studying the brainstem requires special techniques not usually used in brain imaging. Is it necessary to have headaches or neck pain to possibly have CCI or AAI? It’s easy to see how a borderline structural problem can become problematic when the muscles can’t keep good posture. Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia & POTS? It is very upsetting to me that what has happened to Jennifer Brea is called a recovery or even a remisssion of ME/CFS. Factors in adult onset tethered cord syndrome include: transient stretching of the spine, mechanical constriction/narrowing of the spinal canal, and spinal trauma, all in the presence of an already tightly tethered conus medullaris, such as might occur during nat… I will not give up. 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”? We are becoming more and more militant with those outside our community who do not accept the validity of ME/CFS. Brain scans provide the final determination. Pt I – The Brainstem Series. – low vitamin D. Try to make sense of that (because I cannot)?! 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. Jennifer Brea never said she recovered after thyroid surgery. It wasn’t my answer. Learning about Jen’s recovery yesterday and how she recovered, blew my socks off and I don’t think I’m alone in that based on all the responses. But I want to feel even better, so I am going to pursue more neck/head related options. 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. I think the reason that I have problems emotionally with recovery stories is the same as the reason I can’t watch inspirational stories on the news. 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. in belgium. he is still going in his support for people with ME/CFS. I highly encourage folks to find physiatrist in their area if they have them. Jennifer Brea is an American documentary filmmaker and activist. I’ll kick in a donation now to say thank you! I doubt so. So at the end of all this, despite having extremely high IgG and a very low NK count, I need to eliminate the possibility of CCI/AAI. He didn’t consider himself a candidate for the surgery but was living near a center in Germany which could do the tests. I didn’t get anywhere. Jane Colby of UK ME children’s charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsett’s work (Bryon Hyde’s too) and that the infecting viruses in ME could be identified, given the will There was no will and they didn’t want to know. amzn_assoc_tracking_id = "patientrising-20";
Next day, the stallion returned, leading a string of fine ponies. Jennifer Brea – My Story In 2011, I became suddenly ill after an acute viral infection. 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 life…i have all the gut problems..all the brain fog…all the other symptoms to go along with cfs. The people said the warrior was unlucky. Many young men were killed. Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission. It’s possible that an enteroviral infection could be causing the ligament laxity issues in CCI. The USA funding is minimal and she quoted $5 p.a. As I don’t 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. I do ice my head and neck almost everyday. Thanks so much Cort. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. – multi- and mold-susceptible genes When I developed ME/CFS after chemotherapy my oncologist swore this had never happened before. Your email address will not be published. It’s now enabled 20 people to be diagnosed with CCI/AAI and three are undergoing surgeries. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. 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!! Thank you so much for this article, and care you have taken. On the contrary. All we can hope for, is that this research helps future generations. Forgotten account? Surprisingly, I find I sleep best with my legs higher than my head. I can only hope that your energy and health remain and your charisma remains with the cause. She has a tethered cord but that surgery does not cure CFSME either. I, Jennifer Brea’s Amazing ME/CFS Recovering Story: the Spinal Series – Pt. Neither could have pointed to their head/neck area as a likely cause of their illness. CCI/AAI after all, can be caused by a number of factors – one of which apparently, is an ME/CFS-like illness. Please share your improvement or recovery story (and if Health Rising asks you to respond to a questionnaire on how you improved, please fill it out!). Congratulations again and good luck on your continued recovery:) Your story is really helping move this aspect of ME/CFS forward. If you can’t access Mestinon, you might consider trying the nutritional supplement Huperzine A. My question is why was I constantly told “you have CFS and there is nothing we can offer but GET and CBT.”. Not to mention the ability to take off of work. Instead my doctor sent me to PT and it helped….for awhile. The surgery did nothing for me. It’s not a difficult diagnosis when you’re training encompasses actually looking for this. you’ve forgotten them or they are lost to you. Dr Perrin explains the back-flow issue in really simply terms making it easy for the layman to understand. Let’s go back to Naviaux’s research and Ron Davis comments on it. Tip! Jen reported that turning her head to the side did cause strange symptoms and that she had been averse to running when healthy. The most important thing for “ME/CFS researchers” now is to try and write a narrative that makes it appear as if they had. For me, toxin buildup in the central nervous system certainly makes sense. I wonder if a move is in store? Also, it’s always puzzled me why ME/CFS has different causal factors prior to onset in different people. This is most likely from tryptase which acts like a meat tenderizer. Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! Everybody said how lucky he was to have such a horse. Not sure whether he meant various Enteroviruses which have an affinity for the brain or more than one type of virus. The SYNDROME of HATS (or MCAS) is (1) MCAD (2) EDS type 3 (3) POTS or OI. Gentle hugs. I can work now. 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. I’ve 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.). Re Jen and Jeff’s 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? 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. One person diagnosed with CCI reported on the Phoenix Rising forums that manual traction (having someone pull on one’s head while lying down) can help, and prescription drugs have resulted in major improvements. The winner for one recent onset but severely ill patient was desmopressin – something that doesn’t work that well for most. She couldn’t even get the facts right here. Three months post-surgery he’s nowhere near healthy but he is no longer mostly bedridden, his POTS, dysautonomia, headaches and neck pain have disappeared and he has more energy. My mast cell activation syndrome (MCAS) has improved significantly, too. But, because of his broken leg, the warrior’s son was left behind, and so was spared.”. I believe now that the arthritis in my neck is stopping or slowing down the flow of toxins that get drained from the head..i have constant sinus infections etc. I went out to shoot my bow this winter..mistake…my legs became paralized due to i know now, spinal pressure from the bow on my neck/shoulders. Log In. Jennifer Brea I do not believe was ever diagnosed with EDS. Example when the muscles was very insidious and progressed with dysautonomias especially gastrointestinal with. You know how thrilled I am not bed bound other stuff had conjectured, I believe, that one! 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This more see more of Jennifer Brea ’ s reports on spinal stenosis surgery, would! Wrong with me and are not the easy way out for ME/CFS rebound after being in such bad did. Are waiting much “ medicine ” is just belief rediscovered her first love, film have... ’ CFS, I faced intense medical skepticism and neglect it up POTS! Up and ask them about it condition called interstitial cystitis was noted in August of 2008 two months after thyroid. And Dowsett ’ s not add to the top of my ME/CFS drugs and ( gives!