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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To see this working, head to your live site. Categories All Posts My Posts Arachnoiditis Community Forum Welcome! This is a member only section. You will need to sign-up in order to participate. Create New Post Starting Point Newly Diagnosed Follow Views Posts 1 Educational Materials Follow Views Posts 15 Treatment & Medication Follow Views Posts 6 Share Your Story Follow Views Posts 2 Disabled Resources Follow Views Posts 8 Mental & Emotional Health Follow Views Posts 1 Open (General) Discussion Follow Views Posts 7 Living with Arachnoiditis Follow Views Posts 5 Pain Pumps & SCI Implants Follow Views Posts 2 Men Only Follow Views Posts 1 Women Only Follow Views Posts 1 New Posts Lori Verton May 13, 2023 Interesting yet depressing study on Patient/Healthcare Providers difficult interactions. Mental & Emotional Health https://www.sciencedirect.com/science/article/pii/S2667321523000215 Read this study! TRIGGER WARNING This study recounts difficult and traumatic experiences reported by individuals with hEDS. EDS seems to be highly represented in our #Arachnoiditis community. Nevertheless, I think you may find yourselves remembering your own traumatic experiences with disbelieving or hostile healthcare providers. Mental health can be impacted even if you haven't identified these occasions as traumatic. We recommend Peer Support and/or counselling if you identify with the themes found in the study below. #trauma #ptsdawareness #Arachnoiditis #treatment ------------------------------- "Our participants had come to expect clinicians' negative attitudes and disbelief. Eighty-nine percent said that they felt clinicians had been disrespectful or unprofessional toward them. Another ninety-two percent said they had felt invalidated by their clinicians. One individual said, 'They don't take you seriously, or they think you're overbearing or just paranoid' (253)." I certainly have stories of traumatic healthcare experiences that are similar in nature to the ones reported in this study. It's my belief that these experiences are very common in Arachnoiditis as well as many other rare or rarely diagnosed conditions. Besides prioritizing the distribution of Arachnoiditis Awareness materials, what other ideas do you have to lessen how often our community members experience trauma like this? Like 2 0 comments 0 Forum - Frameless

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

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

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

The Dr. Terri A Lewis ACMCRN Memorial It is with broken hearts and great sadness that we announce the passing of one of our ACMCRN Founding Directors. Terri Lewis PhD as VP Research was instrumental in developing and guiding our Arachnoiditis Research efforts, including our Pilot study at www.bit.ly/Arachnoiditis_Research . Our ongoing research survey was custom developed with Terri's leadership, and we believe it is the largest Patient Reported survey to date in Arachnoiditis, with nearly 1100 respondents to date. Terri was a known leader and Patient Advocate in the Chronic Pain and Arachnoiditis communities and her own recent research in Chronic Pain has been instrumental in the fight for appropriate pain management. Our hearts go out to her family and friends who are grieving her passing also. ACMCRN will be developing a Memorial project in her name and memory so that her herculean work in Arachnoiditis and Chronic Pain are not forgotten. Please click on the yellow donate button below to donate in Dr. Terri Lewis name. In addition to carrying on her legacy of research in the field of Arachnoiditis, ACMCRN will be creating an annual award in her name. Terms of the award will be announced here on ACMCRN in July.

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

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

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

Naltrexone-LDN AND ULDN Low Dose Naltrexone (LDN) and Ultra Low Dose Naltrexone (ULDN) is quickly becoming a popular treatment for a wide variety of chronic pain conditions, including Arachnoiditis, fibromyalgia, and more. It also treats autoimmune conditions such as Hashimoto's, Addisons, etc. To see the full list, click here (page will open in new window). Naltrexone is commonly prescribed as an addiction medication used to treat opioid addiction, but at much lower doses it has been found to be an analgesia and anti-inflammatory. Many Arachnoiditis patients have good luck with LDN and ULDN. ​ Introduction to Low Dose Naltrexone (LDN) and Ultra Low Dose Naltrexone (ULDN) Understanding LDN: LDN introduces a novel paradigm in treatment. It enhances the immune system by increasing endorphins and metenkephalin (opioid growth factor) production, leading to immune system modulation. Dr. David Gluck, MD, describes LDN as a unique method of strengthening and balancing the immune system. Dr. Tom Gilhooy explains that LDN's left-handed element increases endorphin production, while the right-handed element reduces inflammation by inhibiting cytokine production. LDN employs a "blocking period" where endorp hin activity is temporarily inhibited, triggering an immune response that increases endorphin receptors and levels, supporting immune function and pain reduction. Additionally, LDN's anti-inflammatory impact can manifest within 30 minutes of dosing, providing relief from pain and mood-related symptoms. Additional Resources: Gain insight into LDN's mechanics through videos and explanations: Watch Intro Video | LDN Research Trust | LDN Now Benefits of LDN: LDN offers multiple advantages, including immune system modulation, pain relief, and anti-inflammatory effects. Positive outcomes have been reported for various conditions. Personalizing LDN Dosage: Begin with a low dose (e.g., 0.5mg) and gradually increase to find the optimal dosage. Consider dextrose, sucrose, or ginger as capsule fillers to minimize potential side effects. Liquid LDN versions may offer easier dosage adjustments; choose formulations with minimal ingredients. Educational Videos and Resources: Learn about LDN's role in treating fibromyalgia pain: Watch Video Detailed explanations of LDN's workings: LDN Research Trust | LDN Now | Mechanism of Action | 2020 US Information Pack Explore a comprehensive review article: Top 8 Uses of LDN | Uses of LDN in Clinical Practice | LDN for Chronic Pain Investigate the connection between autoimmune disease and endorphin deficiency: Endorphins and Autoimmune Disease Patient Testimonials and Clinical Trials: Watch LDN patients share their experiences: Vimeo | YouTube Explore conditions treated with LDN and clinical trials: LDN Research Trust | Clinical Trials | More Trials | LDN Now | ClinicalTrials.gov LDN Documentaries and Expert Insights: - Access documentaries and expert interviews: LDN Documentaries | LDN for Allergies and Autoimmune Disease ​ ​

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

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

WHO WE HELP Being diagnosed with a rare, painful and sometimes progressive disease can be daunting. There's very little information out there, and what you find isn't generally accepted by the medical community and that's because rare diseases are rarely studied. ACMCRN was formed to put an end to that for Arachnoiditis. ACMCRN is here to help guide you through your journey with Arachnoiditis. Wherever you're the patient, a loved one, caretaker, or physician, we want to make this journey as easy for you and the ones that you love. ABOUT ARACHNOIDITIS Learn exactly what Arachnoiditis is and whats being done to help those you suffer from it. READ MORE FACES OF ARACHNOIDITIS Read the true stories of those who suffer from Arachnoiditis, and learn that you are not alone. ACMCRN is a safe and loving community. READ MORE

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

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

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

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

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

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

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

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

< Back Aktiva Physio Fit Krüger und Schreiber GbR Doctorate of Physical Therapy (PT) Orthopedic & Spine Institute (248) 553-0010 (586) 771-9966 25100 Kelly Rd, Roseville, MI 48066, USA ​

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

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

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

HISTORY OF ARACHNOIDITIS While few Doctors know about the spinal canal inflammatory disorder known as Arachnoiditis, Arachnoiditis itself is an old disease that was first discovered in the mid-1800’s. It was first written about in a book about railway injuries and was described as a syndrome of severe pain and neurological sequelae after railway accidents, a common trauma of the time. Further, tuberculosis and syphilis were known to cause a similar syndrome. Thanks to the discovery of antibiotics, and the decline of rail transport, these diseases were drastically reduced in the early 1900s. However, in the 20th century, several oil-based dyes were developed to help enhance x-ray imaging. In 1944, Pantopaque was introduced clinically for use in myelograms, a procedure where dyes were placed into the thecal sac in order to highlight the spinal cord and nerve roots. (The thecal sac encapsulates the spinal cord and brain and contains the cerebrospinal fluid known as CSF). ​ Although the Pantopaque dye was removed after a myelogram, residual Pantopaque droplets remained which irritated the nerves, and in an estimated 30 million cases, led to the development of Arachnoiditis. These irritated nerves from the spinal cord became inflamed and adhered to the thecal sac, usually in the arachnoid layer. This is the more severe form known as Adhesive Arachnoiditis (1) Fast forward to the 21st century and you'll find that Arachnoiditis has made a significant comeback. New MRI technology has made it much easier to look at the spinal cord, thecal sac, (made of dura, arachnoid and pia meninges) and visualize the characteristic signs of nerve root adhesions and canal derangement. Although still considered rare, it has re-emerged for a variety of reasons. There are several causes including aging, degenerative spine conditions, obesity, sedentary lifestyles, and invasive spine interventions and surgeries. It appears that a good portion of FBSS (Failed Back Surgery Syndrome) is actually Arachnoiditis. Failed interventional pain techniques such as epidural corticosteroid injections (ESI), including obstetrical epidural anesthesia are also modern causes of Arachnoiditis (2) ​ (1 ) https://drive.google.com/file/d/0B9qhJMwbB4FpVnBHaS1UVnR1aGc/view?usp=drivesdk&resourcekey=0-kqGoCznXRhyQ8vTVnTMNqQ (2) https://drive.google.com/file/d/0B9qhJMwbB4FpVnBHaS1UVnR1aGc/view?usp=drivesdk&resourcekey=0-kqGoCznXRhyQ8vTVnTMNqQ ABOUT ARACHNOIDITIS Arachnoiditis is initiated when there's an insult to the Arachnoid mater from either trauma, infection, chemical irritation, or substances foreign to the spinal canal, such as blood. When there’s an assault (injury) to the Arachnoid meninge, the body's normal response is to trigger special glial cells located in the central nervous system. These then migrate to the injured area and release cytokines, which can be helpful at first and is part of the normal healing process. However, in those who are predisposed to Arachnoiditis, it also causes neuro-inflammation, which when left untreated, causes adhesions between the nerves and the thecal sac that surrounds the brain and spinal cord then become thick, swollen, and stuck together. This usually happens in the lower lumbar region of the spine where the spinal cord changes from one cord to a number of paired nerve roots that extend through the dura and innervate the muscles of the lower trunk, pelvic region, sexual organs and more. These adhesions become clumped and tethered which can progress to the scarring referred to as Adhesive Arachnoiditis (AA). Arachnoiditis (neuroinflammation of arachnoid meninge without adhesions/clumping) and Adhesive Arachnoiditis are the two most common forms, but there are also other more rare forms (3) Arachnoiditis is most commonly found in the lumbar region, but can also be found in the thoracic, cervical, optical, or intracranial region. Because much of Arachnoiditis is thought to be caused by repeated herniations and compression stenosis, it is most frequently found in the lumbar region. As a rarely diagnosed disease by doctors, Arachnoiditis is often missed for many years. Most rare diseases take on average 5.8 years and 7 doctors to be properly diagnosed. It's unfortunate that most doctors do not know about Arachnoiditis, nor is it easy for the average physician to distinguish its characteristics on MRI. It's very important that a proper diagnosis be made quickly after the original insult. If diagnosed and treated in the earliest inflammatory stage--aggressively treated with corticosteroids, along with strong anti-inflammatories such as Toradol--current research seem to indicate it can be put into remission. This is why we need to educate physicians and radiologists about the threat of Arachnoiditis and how to identify Arachnoiditis early on, rather than years later. Be sure to check out our Starting Point and Treatment Plan page to get started on a treatment plan. ​ (3) https://link.springer.com/article/10.1007/s40268-015-0119-3#citeas CAUSES OF ARACHNOIDITIS Arachnoiditis is caused by inflammation of the arachnoid, one of the membranes surrounding and protecting the nerves of the spinal cord. It can result from spinal surgery, epidural injections, trauma to the spine, bacterial or viral infections affecting the spine, and exposure to certain chemicals. In some cases, it may also develop without a clear cause, making diagnosis and treatment challenging. SYMPTOMS OF ARACHNOIDITIS Arachnoiditis can cause a number of debilitating symptoms. The top ten symptoms as described by participants in our Stuff That Works survey are: Lower back pain Leg pain Pain Numbness Back pain Headache Odd sensations such as tingling, bugs crawling on legs, and water dripping on legs Muscle spasms Burning pain Weakness in legs Other symptoms can be tinnitus; problems with vision and hearing; bladder, bowel, or sexual dysfunction; hot/cold intolerance; stiffness; pain in next and between shoulder blades; and pain into hands. In severe cases, arachnoiditis may lead to paralysis of the legs. TREATMENT OPTIONS Up until about 2015 there was little in the way of treatment options. A few tactics were tried such as trying to remove the adhesions (thecaloscopy), antibiotic treatment, and a number of other miscellaneous treatments that had little success. Thecaloscopy has come some way since then and shows a bit of promise. Pentoxifylline/Vit E regimen for epidural fibrosis is a newer treatment, but it's expected to take a minimum of 4 years of constant use of these meds to show any improvement. Many in our community have been using the 3 Component Treatment Protocol by The Tennant Foundation, and anecdotal evidence from Arachnoiditis community members seem to show some clinical success, with reports of lowered pain and increased function. Unfortunately, this is what Arachnoiditis patients have to go through, just like many other rare disease warriors. We need to have Arachnoiditis recognized as the serious public health threat that it is and it's going to take a massive effort to get there. Most of the efforts that are being led, just like here at ACMCRN, are being accomplished by Arachnoiditis sufferers who face significant physical challenges in putting the time necessary to get Arachnoiditis studied. LEARNING HOW TO UNDERSTAND YOUR SPINAL MRI Although there are other videos on learning to read your spinal MRI, I think this is a very good and easy to follow lecture on how to read your lumbar MRI by Dr. Gillard. It comes in both video and as an article.

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

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

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

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

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

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

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

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

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