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< Back Richard Holt Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Visit our ACMCRN Arachnoiditis Fundraising Store ​ Welcome to our ACMCRN Arachnoiditis fundraising store, where you can shop for a cause and be a part of our mission to make a difference in the lives of those affected by arachnoiditis. We're thrilled to have you on board as we strive to provide education, advocacy, and support to individuals and families dealing with this challenging condition. ​ Your Purchase Powers Progress Every purchase you make at our store goes a long way in advancing our mission. With your support, we can fund crucial research, raise awareness, and provide essential resources to patients and their loved ones. Your contribution becomes a beacon of hope for those affected by arachnoiditis, and we sincerely thank you for that. ​ A Store with Purpose Our store already features a diverse range of products, including short and long sleeve t-shirts and comfortable hoodies. But that's not all – we offer merchandise for CRPS (complex regional pain syndrome), Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD), and rare disease awareness. These additional categories allow you to support multiple important causes, all from one place. Additionally, we offer the flexibility to create custom-made orders, including travel mugs, coffee cups, tote bags, stickers, and more. These customizable options allow you to express your support in a way that suits your unique style and preferences. ​ More Categories Coming Soon Stay tuned for even more categories that will be added to our store in the near future. We are dedicated to making a positive impact on a wide range of health-related issues, and your continued support allows us to expand our mission further. ​ Make a Difference Today When you browse through our store and select the products you love, you're not just acquiring stylish apparel; you're making a real impact in the lives of countless individuals. Your purchase becomes a lifeline, ensuring that patients with arachnoiditis, CRPS, EDS, HSD, and those affected by rare diseases receive the support and assistance they need. Thank you for being a part of our mission. Your support means the world to us and to the communities we serve. Together, we can create a brighter future for those affected by these challenging conditions. Shop with us and be a catalyst for change. Shop Now!

DISCLAIMER *******Important Notice********** ​ ACMCRN endeavors to offer those affected by Arachnoiditis a collection of the most current and comprehensive resources available. Peer events such as Peer Support group meetings and our Arachnoiditis Community Forum , offer an opportunity to learn from the experiences of others and is not a substitute for professional counseling nor is it intended to replace the advice of your medical professionals. ACMCRN nonprofit does not provide One-on-one Peer Counseling services ("Private" Counselors) at this time. If you feel like you're experiencing a mental health emergency, speak to someone now. To reach the National Suicide Prevention hotline call or text 988. For help outside the United States visit https://support.google.com/websearch/answer/11181469?hl=en ​ if you have any questions or comments, please contact us at contact@acmcrn.org

< Back Eugen Schlegel Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

ACMCRN has your back-- and burning feet-- two main areas where Arachnoiditis usually hits. Our Collaborative Research Network was created in 2017 in order to bring light to this rare disease and a voice to those who suffer with it. Arachnoiditis is considered a rare disease throughout the world, although it was previously perhaps best known only in those locations globally with high rates of Tuberculosis (TB), as TB can create its own form of Adhesive Arachnoiditis. Unfortunately, up until recently, most rare diseases had very limited research and even fewer treatments available, because of very little historical interest by researchers and the pharmaceutical industry. Most pharma and businesses felt that whatever treatment they discovered would make little money, given their assumptions about the numbers who would want to buy their treatments. But with the advent of high speed internet, social media groups, and software dedicated to the rare disease cause, a paradigm shift has occurred in the ways clinical research in rare disease can be performed. Prior to this shift, it was very difficult to organize and run a single protocol across many geographical areas, requiring significant resources to create multiple site administration teams, including professional recruitment costs and project management. For most diseases considered rare, the lack of patients with the disease meant there was simply never enough funding available to cover these most basic research costs. For all these reasons, the research into Arachnoiditis to date has been slow to non-existent, with only a handful of dedicated practitioners leading research and education efforts, and even fewer putting these protocols and recommended treatment agents to the test. Thanks to the advent of high speed internet available around the world, and social media programs like Facebook and Zoom, many of these previous obstacles to research have been quickly resolved. Facebook and Google Groups had become an Arachnoiditis community meeting post of some kind, where those with Arachnoiditis living anywhere in the world could easily find peer groups to educate and support them in adapting to their new illnesses. Soon leaders in other rare disease communities were coming together to teach each other how to use these new tools in service to their common education and research goals. Cooperative communities like Beacon (through Europe's Rare Disease Organization known as EURORDIS), Genetic Alliance, NORD and more have developed software tools and platforms that have assisted rare disease groups in the development of patient registry/research infrastructure, IRB approved clinical studies and more. We are on the cutting edge of this great new era in clinical research for rare disease and are helping our Arachnoiditis community make the most of these new opportunities!

< Back Kenneth Thunder Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Leonardo Furtado Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Tod P Work Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Caroline Capitano Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Welcome to ACMCRN newsletter section. This section has been moved to our blog and can be found here: Newsletter ​ If you're not already signed up for our monthly newsletter, be sure to subscribe now. Subscribe Now! Click to download November 2022 Newsletter

< Back Jerry M Keepers Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Anne Walch Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Important Notice: Temporary Closure of Zoom Support Meetings for Open Discussion and Women Only ​ We regret to inform you that, due to health-related issues experienced by the hosts, our Arachnoiditis Zoom Support meetings for Open Discussion and Women Only are temporarily closed. Please note that our Men's Only meetings remain open and available. We're dedicated to creating an even more supportive and secure space for our community and look forward to reopening the closed meetings with enhancements soon. During this time, we encourage you to stay connected with us through our online community and website for resources and updates. ​ Warm regards, The ACMCRN Team ​ Click on the link below for the Men's Zoom Support Meeting: ​ Please read the disclaimer before your first meeting. ​ Men Only - Tuesday 7pm EST - https://us02web.zoom.us/j/85018842935?pwd=WFZsWnZMcFBkcjFYMmtnRWI4c1FTdz09

< Back Thomas Hodgkiss Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Steven W. Hwang Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Welcome to the ACMCRN Calendar of Events! ​ This page is your go-to resource for all upcoming special events, support meetings, and engaging opportunities hosted by ACMCRN. Our Google Calendar integration ensures you have the most current information on event dates, times, and details right at your fingertips. ​ Exciting Updates to Our Support Meetings ​ Starting April 1st, we're thrilled to announce the expansion of our Zoom Support Meetings lineup. These sessions are designed to offer our community members additional support, resources, and engaging discussions tailored to the needs of those living with Arachnoiditis. ​ Tuesday Evenings with Lew Sypher - Join us every Tuesday at 7pm EST for Men's Zoom Support Meetings hosted by Lew Sypher. These sessions provide a safe and supportive environment to share experiences, challenges, and triumphs. ​ Introducing New Hosts and Meetings - We are delighted to welcome ACMCRN President Lori Verton and Louise Carbonneau, admin and owner of the Arachnoiditis Facebook group and one of ACMCRN's founding members, as hosts in our Peer Support Zoom meetings. Their expertise and compassion will undoubtedly enrich our community's experience. ​ - Lori Verton will be hosting a new Zoom Peer Support meeting every Saturday at 2pm EDT starting April 1st . These meetings promise to be a source of strength, encouragement, and invaluable insights for all attendees. ​ Our Expanded Host Lineup - Our team of hosts is growing! In addition to our current offerings, we will introduce three new hosts, ready to guide engaging and supportive sessions. Keep an eye out for the full schedule of Peer Support meetings starting April 1st! ​ Innovative Meeting Formats In our commitment to providing diverse and enriching experiences, we will be experimenting with various meeting types, including: - "Topic" Series: Dive deep into specific topics over several weeks, fostering thorough understanding and discussion. - "Tools" Series: Explore and practice tools like mindfulness and visualization exercises, among others, to enhance wellness and mental health. - "Talks": Enjoy conversations with special guests discussing their work, specialties, and insights into managing Arachnoiditis. Stay Tuned for More Details We're finalizing the details of our expanded support meeting offerings, including the exciting new sessions hosted by Louise Carbonneau. More information on what members can expect from these meetings will be shared soon. ​ Mark Your Calendars! Don't miss out on these valuable opportunities to connect, learn, and grow with the ACMCRN community. Check back often for the latest updates and scheduling details. ​ Together, we are stronger. We look forward to seeing you at our upcoming events and support meetings! ​ Zoom Support Meetings Important Notice: Temporary Closure of Zoom Support Meetings for Open Discussion and Women Only ​ We regret to inform you that, due to health-related issues experienced by the hosts, our Arachnoiditis Zoom Support meetings for Open Discussion and Women Only are temporarily closed. Please note that our Men's Only meetings remain open and available. We're dedicated to creating an even more supportive and secure space for our community and look forward to reopening the closed meetings with enhancements soon. During this time, we encourage you to stay connected with us through our online community and website for resources and updates. ​ Click on the link below for the Men's Zoom Support Meeting: ​ Please read the disclaimer before your first meeting. ​ Men Only - Tuesday 7pm EST - https://us02web.zoom.us/j/85018842935?pwd=WFZsWnZMcFBkcjFYMmtnRWI4c1FTdz09 ​

< Back Michael S Chang Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Pamela Chapin Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Geoffrey R. Camp Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Richard Moore Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Timothy Lubenow Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Ranjit Nihal Karunaratne Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Herr Prof. Dr. Jan-Peter Warnke Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Nathaniel Moore Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Wilson J. Chang Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Kenneth Joel Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Catherine McNamara, DNP, FNP, APN Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Christopher John Standaert Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Kristyn M. Pocock, M.D. Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Liz Mcarthy Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

WE'VE GOT YOUR BACK! ACMCRN has your back-- and burning feet-- two main areas where Arachnoiditis usually hits. Our Collaborative Research Network was created in 2017 in order to bring light to this rare disease and a voice to those who suffer with it. LEARN MORE Header Celebrate Courage, Raise Awareness: Join Us for Rare Disease Day Join us in commemorating Rare Disease Day on our dedicated page, where we unite in support of those affected by rare conditions. Discover inspiring patient stories, including Emmalyn's brave journey, access invaluable resources for treatment and research, and learn how you can contribute through our fundraising merchandise. Together, we're part of a global effort to raise awareness and drive advancements in rare disease care. Visit our Rare Disease Day page to learn more. LEARN MORE Rare Disease Day ABOUT ARACHNOIDITIS Arachnoiditis is initiated when there's an insult to the Arachnoid mater from either trauma, infection, or chemical irritation. When this happens, the body's normal response is to trigger special glial cells located in the nerves. These then migrate to the injured area and release cytokines as part of normal healing. ​ However, in those who are predisposed to Arachnoiditis, it also causes neuro-inflammation, that if left untreated, becomes swollen and inflamed, leading to the nerves becoming clumped and tethered together, which can progress to them adhering to the dura layer of the meninges, which is commonly called Adhesive Arachnoiditis (or scarring) and is the most severe form of Arachnoiditis. For people living with a serious disease that's labeled as rare, this can be a real living nightmare. For the thousands, perhaps millions of people who have Arachnoiditis, we need to educate the public and the medical community on this serious public health threat. READ MORE About AA WHO IS ACMCRN? About Us Arachnoiditis & Chronic Meningitis Collaborative Research Network (ACMCRN) serves patients, physicians, and researchers in the global Arachnoiditis community. By harnessing the power of social media, which allows patients and their families - 'Arachwarriors ' to collaborate across the globe, and employing the latest in rare disease research techniques, we hope to find the answers to this rarely studied condition. Through the power of community, (patients, families, physicians, and researchers), we aim to uncover answers that will lead to prevention, care and clinical treatment of this devastating disease. LEARN MORE STARTING POINT Emergency Protocol If you're new to Arachnoiditis and looking for guidance on where to begin, our Starting Point webpage is a great resource to get you started. We provide a wealth of information on medical treatment options, including both prescription and non-prescription medications, alternative treatments, and medical devices. In addition, we offer peer support meetings and an emergency starting protocol to help you manage the condition. We also feature Dr. Tennant's three-component protocol, a comprehensive treatment approach designed to address the physical, psychological, and emotional aspects of living with Arachnoiditis. Visit our website to access all of these valuable resources and more. LEARN MORE

< Back Lawrence Neshiwat Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Dr. Betsy Grunch Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Cristina Trypanis Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Robert Benjamin Bolash Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Brooke Vanderby Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Allan Schwartz- Featured Faces of Arachnoiditis Story Allan Schwartz's story of enduring a rare spinal cord disease - as told in his new book, Called to Persevere: One man's journey to overcome pain, disease and disappointment with God - is both captivating and life changing. Arachnoiditis has caused him to be confined to a wheelchair, as he no longer has full use of his legs. Allan’s crippling pain began at age seventeen, and during the subsequent seventeen years, he endured 3 back surgeries, 6 epidurals, 7 spinal taps, several nerve blocks, and the implantation of a spinal cord stimulator. He has also undergone dozens of unsuccessful treatment plans such as hyperbaric treatment and IVIG (intravenous immunoglobulin) infusions. At age 20, he ventured to Germany for treatment. That treatment led to his ability to be out of the wheelchair, standing tall and walking! Unfortunately, just when he thought his miracle had finally come, tragedy struck just a short six months later - his arachnoiditis came back with a vengeance. Allan contracted arachnoiditis from his very first back surgery. He has suffered through more hospital stays, experimental treatments, misdiagnoses, and surgeries than most people endure in a lifetime. His darkest time was when he was bedridden for almost two years without a diagnosis. Throughout it all, Allan has maintained a positive attitude. His number one recommendation is to put your faith and trust in God. He believes that God has called him to persevere and encourages you to do the same. Enduring this disease together has made Allan and his wife stronger, both individually and as a couple. On several occasions, they were informed that Allan would not be able to become a father, but God had other plans. He blessed Allan and his wife with two beautiful, miracle children. ​ Please help support Allan's goal of making his book into a movie to help spread awareness about Arachnoiditis by purchasing your copy today , Called to Persevere: One man's journey to overcome pain, disease and disappointment with God ​ ​ Have a story you'd like to share with us? Send us an email with your story of 500 words or less and we will be in contact with you. ​

< Back Brenda McCool Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Charles L Crist Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Joseph Kassa Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Kathleen M Hannon Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Barry I Feinberg Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Enoch Carter I was once very active. I used to mountain bike and road bike often and trail run 6 or 7 miles, two to three times a week. Was often in the gym working out to keep my fit looking figure. I tried a lot of active maintenance because I'm a software engineer and spend my whole day at work sitting at a computer. Then one day I woke up in the hospital with a broken mind and a broken body. I had been hit head on by an ATV while mountain biking. Smashed my spine, broke all my ribs, and suffered severe brain shearing which caused bad amnesia. I could not remember much of my life. This was also just when COVID hot, so not only was I new and different, but so was the whole world. While struggling to remember who I am and what I do. I lost my job and the new house we were just purchasing and having built custom for us. We just sold the house we were in so we were essentially houseless for almost a year before I could get another job and another house. It is not easy to interview for a software job when you're actively trying to re teach yourself everything you once knew and have little memory of your previous work experience. My regular exercise is non existent. It is terribly difficult and painful to run with my new physical condition and finding the time to ride my bike is also difficult. I have regained much of my software skills, although I feel like I struggle more than I did before. Because of my physical damage I felt blessed to have a job that relies entirely on my mental skills. But at the same time my mind was also broken. I felt as if I had suffered the worst of two worlds. I have found some success amongst the most challenging and painful journey of my life, but it is still my life. Enoch Carter Have a story you'd like to share with us? Send us an email with your story of 500 words or less and we will be in contact with you. ​ EMAIL

< Back Jonathan H. Sherman Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

NEURO INFLAMMATION Be sure to also check out our Alternative Treatment page Arachnoiditis is caused by neuro-inflammation and is most commonly found in the Lumbar region of the spine. Although the term arachnoiditis simply implies inflammation of the arachnoid lining of the meninges or thecal sac, the major cause in the vast majority of lumbar cases is neuroinflammation of the nerve roots in the cauda equina. Once glia cells in nerve roots produce neuroinflammation, they may form adhesions and scars that may cause nerve roots to stick together or clump and adhere to the arachnoid lining. When this occurs, it is called Adhesive Arachnoiditis (AA). Because of the location of the nerve roots in the lumbar area, AA may progress to cause bowel and bladder dysfunction; gastrointestinal issues; inability to sit or stand for long periods of time; autoimmune disorders and can eventually lead to paralysis, although with current treatment options, that's rare. There are multiple causes of the neuro-inflammation that can lead to Arachnoiditis such as degenerative disc disease (DDD); degenerative arthritis; spinal stenosis; trauma; meningitis; infection and botched epidurals. Neuroinflammation Like all inflammation, a modest amount is part of the normal healing process, but too much causes tissue destruction with adhesive and scarring. This is why with Adhesive Arachnoiditis you need to follow the Three Component Protocol ( Bulletin 15 ) from Dr. Tennant. We will go through the three elements of the protocol and the medications that work for each component. ​ Neuro inflammation Reduction This is the list of prescriptions and supplements that reduce neuro-inflammation. Be sure to see our Alternative Treatment page for more information. Low Dose Naltrexone (LDN) or Ultra Low Dose Naltrexone (ULDN). Click here to find out more Palmitoylethanolamide (PEA). Please visit Alternative Treatment page for more info CBD Ketorolac Methylprednisolone Dexamethasone Indomethacin Diclofenac Metformin Acetazolamide Pentoxifylline Curcumin Serrapeptase Adrenal Cortex Tissue Regeneration ​ Pregnenolone DHEA Testosterone Medroxyprogesterone Estradiol Human Chorionic Gonadotropin (HCG) Nandrolone Collagen supplements B12 Vitamin C Colostrum © Kenhub (https://www.kenhub.com ); Illustrator: P. Kim NEUROPATHY AND NOCICEPTIVE PAIN Since Adhesive Arachnoiditis can involve damage to both nerves and tissue, it's both neuropathic (pain stemming from nerves) and nociceptive (damaged tissue) and each type of pain involves different methods for treating them. Neuropathic pain is caused by inflammation, irritation or neural tissue compression that needs to be treated with both the inflammatory reduction component and the pain control component of the Three Component Protocol. Gentle stretching, showers/baths, rocking chairs, and walking can also help with neuropathy. Nociceptive Pain responds better to physical therapy to help strengthen and stretch the affected muscles or joints, or gentle stretching at home. Over-the-counter medicines, such as acetaminophen or ibuprofen. Prescription medicines, like opioids or antidepressants. ​ Drug Metabolism Testing; Pharmacogenomics ​ It's highly recommended that you get opioid metabolism testing (pharmcogenomics) done before starting on pain medications. This genetic testing measures how you body metabolizes certain prescription pain medications to help understand what medications work the best and how much to take. To learn more about pharmagenomics, please read this article from the National Institutes on Health (NIH) ​ National Institutes on Health and Pharmacogenomics: https://www.nigms.nih.gov/education/fact-sheets/Pages/pharmacogenomics.aspx Pain control agents: ​ Ketamine Kratom Palmitoylethanolamide (PEA) CBD Oxytocin Gabapentin Topiramate Pregabalin Duloxetine Baclofen Opioids Adderall® Methylphenidate Carisoprodol Diazepam Alprazolam Clonazepam Amitriptyline Lidocaine patch ​ Bulletin 78 - Treating Neuropathic Pain in AA ​ ​ ​ Arachnoiditis Flare ups If you have active Arachnoiditis or Adhesive Arachnoiditis, the odds are you're going to experience what we call a flare up. The intensity can be minor, moderate, severe and can last hours to several days, or more. Without warning, Adhesive Arachnoiditis can flare up and lead to further progression. There are several steps you can take to lessen the severity of a flare up, or to build a good foundation. Step #1 Determine Your Type of Deterioration. Are there new symptoms such as weakness, bladder/bowel dysfunction, balance, walking, or jerks/tremors. Is there more pain resulting in more burning, stabbing, or other neurological pain. Step#2 Take a blood test to check levels for hormones, inflammatory markers, glucose, and cholesterol. Hormone test should include cortisol, DHEA, pregnenolone, testosterone. Inflammatory Markers blood test should include: ESR, CRP, cytokines. Note: A hormone deficiency may cause increased impairments, pain, or both. An elevated inflammatory marker calls for more aggressive control of spinal canal inflammation. Please check out these bulletins to learn more about checking for and treating hormone deficiencies. Bulletin 68 - Steps to Take if You’re Deteriorating Bulletin 57 – Blood Test for AA Neuropathy & Pain Phamacogenomics Pain Contol Meds Flare Up BLOOD HORMONE LEVELS Before starting any hormone supplements, it is recommended to consult with your physician and have your blood hormone levels tested. This is crucial as chronic pain can deplete the endocrine system, and the tests will check how effectively it is working. To treat the neuroinflammation from arachnoiditis, it is necessary to take these tests. ​ The recommended hormone test includes cortisol, DHEA, pregnenolone, and testosterone. In addition, the Inflammatory Markers blood test should include ESR, CRP, and cytokines. Other blood tests that should be taken include blood sugar and cholesterol levels. ​ It's important to note that a hormone deficiency may cause increased impairments and pain, while an elevated inflammatory marker calls for more aggressive control of spinal canal inflammation. For more information, download and print Bulletin 57 - Blood Test for AA . As always, consult your physician before taking any new vitamins or supplements. Hormone Level Testing Spinal Fluid Blockage, seepage and leaks The majority of patients who have reached the adhesive Arachnoiditis stage suffer from spinal fluid issues such as leaks, seepage, and blockage/obstruction from the scar tissue. This can lead to blurry vision, ringing in your ears, brain fog/memory issues, headaches, neck and shoulder pain, nausea. The symptoms you'll experience depend on what type of cerebral spinal fluid (CSF) issue you're having. For obstruction, the buildup of CSF causes the pressure in your spine to increase, which in turn causes pressure on your brain. On the other hand, a CSF leak can cause your spinal pressure to drop, which results in a myriad of complications that are similar to high spinal pressure. There are some medications and supplements you can take to help with CSF leakage and seeping. L -arginine works by increasing the blood flow to the dura which helps to rebuild and strengthen it. ​ CSF related files ​ Spontaneous Low Pressure, Low CSF Volume Headache : Spontaneous Cerebral Spinal Fluid (CSF) Leaks Spontaneous Intracranial Hypotension : 10 Myths and Misconceptions Bulletin #19 : Spinal Fluid Seepage Bulletin #76 : Why Adhesive Arachnoiditis Causes Spinal Fluid Leaks Bulletin #77 : Complications and Treatment of AA Spinal Fluid Leaks Bulletin #47 : Spinal Fluid Flow Exercises for AA Treatment Bulletin #74 : Rocking Chair for CSF flow Bulletin #69 : Acetazolamide for the treatment of high spinal pressure for blurry eyes, headaches, and dizziness Myelography Techniques for the Detection of Spinal CSF Leaks in Spontaneous Intracranial Hypotention (SIH) Chronicle 8 -Treating problems associated with spinal fluid obstruction and inflammation ​ Cerebral Spinal Fluid (CSF) Leak Resources Spinal CSF Leak https://spinalcsfleak.org/about-us/ CSF Leak Association https://csfleak.info/ Spinal CSF Leak Canada https://www.spinalcsfleakcanada.ca/?fbclid=IwAR1RyYpkaSfq_5vwiJZu03EX_hrSS0Wkc8uAg9X6UZbKX7I5rHtRhGGHcEU ​ Spinal CSF Leak Canada Videos on csf leaks https://www.spinalcsfleakcanada.ca/videos Tarlov Cysts Tarlov cysts are formed as a result of the scarring that Adhesive Arachnoiditis causes. It can vary in severity from mild thickenings to catastrophic adhesions that ruin subarachnoid space. As a result, arachnoid cysts can be formed. ​ Tarlov Resources ​ Tarlov Cyst Foundation https://www.tarlovcystfoundation.org/ Tarlov Cyst Society Europe https://www.facebook.com/groups/tarlovcysteurope/?ref=share Vigdis Thompson Foundation Dr. J. Peter Warnke (Tarlov Cyst & Arachnoiditis) https://www.vigdis-thompson-foundation.org/de/ The Vigdis Foundation Germany based foundation dedicated to Arachnoiditis and Tarlov Cysts. You can request a consultation with them if you're suffering from both these conditions. They do request a donation, if you can afford it, because they're a nonprofit organization Collagen Diseases (Ehlers Danlos Syndrome and others) Cusack Protocol for Connective Tissue Disorders Cusack Protocol Dosages chart Cusack Protocol Dosages - list FAQ - Debbie Johnson FAQ for Newcomers Collagen diseases such as Ehlers Danlos Syndrome (EDS), another rare disease, can sometimes be found alongside Arachnoiditis https://arachnoiditishope.com/ehlers-danlos-syndrome/ ​ EDS Awareness- great website for EDS information https://www.chronicpainpartners.com/how-to-improve-your-quality-of-life-while-living-with-ehlers-danlos/ More Resources Want to learn more about Arachnoiditis? Read this great article in Practical Pain Management by Dr. Tennant https://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis?page=0%2C0 Biomarkers in Connective disease, including Arachnoidiotis ​ Spinal Fluid Issues Tarlov Cysts Collagen Disorders

< Back Bobby N Koneru Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

Privacy Statement ​ The policies below are applicable to the website located at www.acmcrn.org and any other websites under the control of ACMCRN (the “Website”), however the Website is accessed and/or used, whether via personal computers, mobile devices, or otherwise, and other interactive features, applications (including mobile applications), or downloads that are operated by ACMCRN (“we” and “us”) that are made available by us. Please be advised that the practices described in this Privacy Policy apply only to information gathered online at our Website. They do not apply to information that you may submit to us offline or to websites maintained by other companies or organizations to which we may link. What information we collect As a general matter, you can browse the Website without submitting your personal information to us. However, there are a number of circumstances in which you may need to provide us with your personal information. The following lists the most common ways in which we collect your personal information. When you register for an account on the Website; When you sign up to receive email newsletters from us; When you participate in surveys, panels, or research; When you register for and participate in our programs, activities, initiatives, and events; When you request information or assistance; When you participate with social media accounts involving ACMCRN properties; When you participate in communities, chat rooms, and other interactive services; In conjunction with any verification of your account information; In conjunction with investigations into any activity that may violate the law or the Website’s terms and conditions; When you communicate with us through the Website; When you provide user-generated content on any part of the Website that permits it; and In conjunction with any other place on the Website where you knowingly volunteer personal information. When you interact with any ACMCRN page or account on a social media platform, such as Facebook, Twitter, Google+, LinkedIn, Tumblr, YouTube, or Pinterest, or Instagram, or when you use your social media account or credentials to log in to the Website, we may also collect the personal information that you make available to us on that page or through that account, including your account ID or “handle.” In addition, when you interact with the Website, our servers may keep an activity log that does not identify you individually (“Non-Personal Information”). Generally, we collect the following categories of Non-Personal Information: We may collect certain demographic data such as age, gender, and five-digit zip code as part of collecting personal information; We collect and store certain device information about your computer, mobile device, or other device that you use to access the Website. This information may include IP address, geolocation information, unique device identifiers, browser type, browser language, and other transactional information; We automatically log certain usage information about your use of the Website. This information includes a reading history of the pages you view. We use this information to provide you with a more customized experience on the Website; We collect and store additional “traffic data” such as time of access, date of access, software crash reports, session identification number, access times, and referring website addresses; and We collect and store your search terms and search results. We also collect and store certain other information regarding our users’ use of the Website so that third parties may provide us with reports and analysis regarding usage and browsing patterns of the Website. How we combine your information We may combine information gathered from the Website and information that we have received, gathered, acquired, or stored from other sources, both information collected offline by the ACMCRN and information received from third parties—including information that currently exists in our files—into a single customer record. We also use and/or combine information that we collect offline or receive from third-party sources (e.g., contact information from government funders or grantor information) to edit, enhance, and/or check the accuracy of your customer record. How we use your information We use the information we learn from you to help us personalize and continually improve your experience on the Website. We use your Personal and Non-Personal Information in the following ways: General Uses For editorial purposes; Responding to your inquiries; Communicating with you about your account or transactions with us and sending you information about features on our Website or about ACMCRN; Communicating with you about changes to our policies; Personalizing content and experiences on our Website, including providing you with recommendations based on your preferences; Sending you newsletters, mailings, and information about programs, initiatives, activities, and events by e-mail or another medium; Event or program registration; Optimizing or improving our programs, services, and operations; Research and development; Verifying your account and account activities; Detecting, investigating, and preventing activities that may violate our policies or be illegal; Performing statistical, demographic, and marketing analyses of users of the Website and their usage patterns; and How we share your information The ACMCRN adheres to the highest standards of ethical practices in all our operations and is dedicated to protecting the privacy of all visitors to our Website. Except as disclosed below, we don’t sell, barter, give away, rent, or permit anyone outside the ACMCRN to use or access your personal information. We occasionally use independent contractors and third-party agents, affiliates, and partners to perform functions such as marketing, analytics, providing customer service, etc., on our behalf. These entities have access to the personal information needed to perform their functions and are contractually obligated to maintain the confidentiality and security of any personal information collected from the Website. They are restricted from using, selling, distributing, or altering this data in any way other than to provide the requested services to the ACMCRN. ACMCRN conducts and supports research and may promote external research on Arachnoiditis. All research is voluntary and is based off informed consent. You may share as much information as you are comfortable with for research purposes. When presenting research results patient identifiers will be kept confidential by all parties involved. We may also use or disclose your personal information if required to do so by law or in the good-faith belief that such action is necessary to (a) conform to applicable law or comply with legal process served on us or the Website; (b) protect and defend our rights or property, the Website, or our users; and (c) act under emergency circumstances to protect the personal safety of us, our affiliates, our agents, or the users of the Website or the public. How we use cookies Like many websites, we use “cookies,” which are small text files that are stored on your computer or equipment when you visit certain online pages that record your preferences. We use cookies to track use of our websites and online services. We may also use cookies to monitor traffic, improve the Websites, and make it easier and/or relevant for your use. This Website is functional without the retention of cookies. You have the ability to accept or decline cookies. Most web browsers automatically accept cookies, but, if you prefer, you can usually modify your browser setting to decline cookies. For more information on cookies and how to disable them, you can consult the information provided by the Interactive Advertising Bureau at www.allaboutcookies.org . Like some websites, we may use web beacons or flash cookies. A web beacon or flash cookie (also known as an “action tag” “tracer tag,” or “single-pixel GIF”) is an invisible graphic on a web page or e-mail newsletter that is programmed to collect non-personally identifiable information about your use of a given website or newsletter, e.g., whether you opened the email. Like cookies, web beacons allow the ACMCRN and its technology providers to summarize overall usage patterns for our analysis and provide personalized services to you. We do not share or provide personally identifiable information we may collect through such web beacons, such as names or e-mail addresses, without your express permission. The ACMCRN strives to protect the transmission and storage of any information submitted by visitors to the Website. But no transmission and storage of data is completely secure, and submissions are at your sole risk. This Website may contain links to sites operated by third parties. Please be advised that the practices described in this Privacy Policy do not apply to information gathered through these other websites. Please remember that any information you share in public areas, such as message boards or feedback sections, becomes public, and therefore this Privacy Policy does not apply to any information you choose to make public. Please be careful about what you disclose, and do not post any personal information that you expect to keep private. The Website is published in the United States and is subject to laws of the United States. If you are located in a country outside the United States and voluntarily submit personal information to us, you thereby consent to the general use of such information as provided in this Privacy Policy and to the transfer of that information to, and/or storage of that information in, the United States. The ACMCRN shall not be liable under any circumstances for damages resulting from use of information collected from visitors to the Website. We reserve the right to modify or amend the terms of this Privacy Policy from time to time without notice. Your continued use of our Website following the posting of changes to this Privacy Policy will mean you accept those changes. ​ Questions and comments should be directed to contact@acmcrn.org . If you have any questions regarding this policy, if you would like to change your preferences, if you no longer wish to receive email updates from ACMCRN, or if you believe ACMCRN has erroneous or incomplete information about you, please send an email to contact@acmcrn.org . We respect your confidentiality ACMCRN requires that your personal information be held in strict confidence. We use your information only for its intended business purpose. We do not sell or trade your information to other organizations or individuals. We protect your information ACMCRN takes every possible measure to insure that your information is not compromised in any way. Our privacy promise extends online to our Internet website too. Online information is transmitted via a secure server using encryption technology. If you choose to send us email, we may retain the contents of your email message, our reply and your email address as part of our ongoing customer service efforts. We reserve the right to contact you after you have contacted us and may send future email and/or surveys to you about NAME. You may notify us via email if you wish to discontinue electronic communication. We keep accurate records We keep your personal information as accurate, complete, and up to date as is required to fulfill the purpose(s) for which you provided us with your personal information. Upon request in writing we will remove your personal information from our databases, except where legislation or regulation requires our retention of it (for example, charitable giving history tied to income tax receipts.) If you have any questions about our website or our Privacy Promise, please contact us at contact@acmcrn.org

< Back Richard Anselmo Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Peggy McGill Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

< Back Patrick Cras Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​