Arachnoiditis Support Groups On Facebook

Closed Group
Arachnoiditis Group: This group’s purpose is to be able to interact with each other on a timely basis and to allow members to exchange views, bring support to one another, a fertile reality based on solidarity, sharing, love, and respect for each other. Medical and sound information(evidence based ) are brought forward in an objective way. Other pathologies relating to the Central Nervous System are also discussed in this group such as Syringomyelia, Ms, Fibromyalgia, Tarlov Cysts, Arachnoiditis cysts, Epidural fibrosis, or any others considered as being of importance to the primary diagnosis. It is a CLOSED GROUP, members are able to express themselves comfortably without fear of retribution. RESPECT AND COMPASSION ARE AT THE FOREFRONT OF THIS GROUP. WE ARE SUPPORTIVE AND UNDERSTANDING. You will receive a message from an adminfollowing your request to join. Please respond asap. thank you The pain in each of us recognizes the pain in you. Welcome to our group. Le but de ce groupe est de pouvoir échanger et de nous soutenir l’un et l’autre. Nous avons beaucoup de compassion, de l’amour et nous savons écouté. Nous sommes tous en grande douleurs, certains plus que d’autres, provenant de pathologies comme la sclérose en plaque, la fibromyalgie, les kystes de Tarloc, l’arachnoïdite, la syringomyelie, la fibrose etc. Ce group est fermé donc vous pouvez vous exprimer librement. Il y a beaucoup de respect ce qui est un but premier. Vous recevrez un message d’un administrateur suivant votre requête de joindre, s.v.p., répondez aussitôt que possible. la douleur qui réside en nous, répond à votre douleur.

 

Closed Group
Were you severely damaged by epidurals, epidural steroid injections, spinal nerve blocks, myelograms, surgeries, or other invasive procedures in your spine? A group for those of us suffering with Arachnoiditis, and those struggling for diagnosis, to come together for support. A place to discuss our daily struggles, successes, and just life in general! #Arachnoiditis #failedbacksurgerysyndrome #epidurals #failedbacksyndrome #intractablepain #epiduralsteroidinjections #chronicpain #meningitis #adhesions #chemicalmeningitis ———————————————————————— Members we updated our rules. We don’t have many. We want to keep this group a safe, private, neutral ground for all. Thanks. ***Post or comments relating to the below may be deleted by admin. *** 1. Please do not block admin. Doing so will have you removed from the group. 2. We have members from around the world who have varying beliefs and religious backgrounds. We asked that refrain from posting religious or political matters. Request for prayer or a discussion of how certain religion or faith has helped you is permitted as long as the post is neutral. 3. No soliciting, proselytizing, or fundraising. Please refrain from posting links to fund raising sites. 4. Please be respectful, kind, and sensitive to one another. Remember text does not portray tone of voice. Fight the cause, not each other. 5. Please message admin if you have a question or concern. Admin are Dawn Gonzalez, Ember Fin, Sarah Elizabeth Hirschle, Rebecca Stivers Medina, Tatjana Lomsdalen, Breanda Faye Taylor, Toni Richmond Werner, Judith Kay Bradley
1,360 members

 

Closed Group
When you request to join this group, you will receive a private message from one of our admins. Please respond to the message so we can get you added to the group. It may go to your “other PM (Private message) box” depending on your settings, which you can only access on your computer. It will NOT show your “other” PM on your phone.. Welcome to a very warm and supportive group of fellow sufferers. A place where you can learn, support others, and feel loved. The main thing is we support each other and will not tolerate is a bunch of drama, so if that is what you are here to create, be prepared to be removed from the group. I or any of the administrators will not tolerate a bunch of drama. The members of this group are not trained professionals and there are not any doctors here that I am aware of who can diagnose or give any medical advice of any kind. We are here to support each other and to learn and share as we continue this journey of Arachnoiditis. I hope you enjoy!!
737 members
Closed Group
This group was created to help promote awareness about arachnoiditis and chronic pain. Chronic pain is an epidemic that actually affects more people than diabetes, heart disease, and cancer combined. Yet it also has the least acknowledgment, understanding, and acceptance. Let’s all change that.

 

Closed Group
You are cordially invitited to join us for an exciting, education weeked that is for the patient and provider! The conference will be held in Helena, Montana on July 9, 2016- July 10 2016. Saturday 9:00am-5:00pm Sunday 9:00am-12:00pm Breakfast begins at 8:00am Followed by the Conference at 9:00am; Lunch on saturday will be 12:00-2:00 Room rates will be a set fee of $129.00 for all attendees. If you make your reservation early you may get a lower rate. To make room reservations please contact Radisson Colonial Helena Hotel at 406-443-2100 Toll Free 1-800-333-3333 Tickets for this event are $75.00, this includes your breakfast on Saturday and Sunday and Lunch on Sunday as well as snack items and beverages throughout both days. To purchase tickets please go to: http://conference.achievemembership.com/ Airport is Helena, MT Regional Airport (HLN) We welcome you to message us your medical practitioners information so we can send them an invitation to come learn or any medical practitioner you believe might benefit from this conference as the whole point of this is for other medical practitioners to learn so we can continue to grow the treatment of Dr. Tennants and receive proper medical care where we live. Even if you do not have a primary care practitioner, start searching your area for non-hospital affiliated practitioners, send us their information and we will send an invite. The purpose of this conference is to unite practitioners so they know how to identify and treat intractable patients while protecting themselves. We need the patients involved in helping us find these clinics and the doctors, nurse practitioners, nurses, radiologists and pharmacists whom we can invite! Our only hope is to spread awareness and teach other medical practitioners how to treat us as Dr. Tennant is only one man. Agenda includes: History and Physical, Labratory Testing, MRI interpretation, Pain relief minimizing opioids, spinal cord exercises, spinal fluid flow measures, diet and supplements, neuroinflammation prevention and treatment, use of neurogenesis hormones, electromagnetic therapies, flare control and treatments and Auto-immunities. Please contact Kate Lamport 406.461.9956 for any specific details needed. Tysa Ostrander, Heather Carlsness and Marlisa Griffith are on the committee and we will keep this page updated as we are finalizing details. Our email: usa.arc.2016@gmail.com
261 members
Closed Group
WHEN YOU REQUEST TO JOIN OUR GROUP,YOU WILL RECEIVE A PRIVATE MESSAGE THAT WILL GO INTO YOUR “OTHER” MESSAGES BOX,ON YOUR FACEBOOK PAGE.THE ADMINISTRATORS OF THIS GROUP WILL RESPOND VERY QUICKLY TO YOUR REQUEST. PLEASE READ “ABOUT US & DISCLAIMER” IN THE FILES SECTION! For more information on Arachnoiditis, please visit the website: http://www.arachnoiditis.co.uk Respect for other group members beliefs. Non-judgemental NO “Spell Police” 🙂 Impartial information, Guidance/ advice and support Respect Laughter and fun Support and care Self-help
473 members

 

Closed Group
Hello and welcome to the Arachnoiditis Media Support Group. I was approached by Phillipa Mckee who has Arachnoiditis who would like me to bring awareness to this very subject. I would like to hear your side of this condition. What caused it? How do you cope? How has it affected your life? Have you found any ways that improves it? I run a radio show I do not have it personally myself but want to help you all bring all the groups together to promote you all and also bring awareness and maybe let others know who may have it and do not realize. This group is for EVERYONE. There will be no bullying etc. You are in enough pain. We have many other groups that we can connect you with also. If you can suggest people who could come onto the show and speak about any part of this then please do get in touch either by direct message or email asksueshow@gmail.com Thank you x Sue
43 members
Closed Group
This group is for the purpose of raising awareness through a challenge we are still working on the details. More info to come. So far we have created the spider smiley for the hidden disorders group. We are continuing to work on a theme for the challenge and other events.
40 members
Closed Group
arachnoiditis caregivers suport is a compassionate place where care givers for persons suffering from arachnoiditis can express themselves in a supportive enviorment. As care givers , we also suffer from this horrific disability. we need to vent, share, and recieve compassionate support from others who truley understand what we go through. This Group is Only for Caregivers, if you have Arachnoiditis please ask to join Arachnoiditis Everyday, or Arachnoiditis on FaceBook.
77 members
Closed Group
23 members
Closed Group
I set up this group because my husband has arachnoiditis. He hurt his back in 2007 and had 3 hurniated disks. He had the injections done and something went wrong and now he has this for the rest of his life. We have found that most reg doctors don’t know about this condition. This is a life changing condition. I have read so much on this condition that I think I know more than the average doctor.
309 members
Closed Group
This Group Does Not have monitoring generally by any Admin, must act like an Adult and Respect.. Due unto Others~ This group is dedicated to organizing and establishing a Foundation for the purpose of 1) exposing the cause and prevention of Arachnoiditis to the general public and patients, 2) acquiring funding and donations for research to relieve the enormous pain and suffering that victims of this dreaded fate must endure. This effort will also include the search for physicians and health care providers that have the passion and dedication to search for a cure to end the suffering of many victims, and 3) finding partnerships – including potential media connections – that will promote our cause. *********************************************** PLEASE NOTE- ANYBODY WHO WISHES TO JOIN AVA, PLEASE KEEP YOUR MESSENGER TURNED ON SO WE MAY CONFIRM YOUR INTEREST IN JOINING OUR FIGHT. THANK YOU!! *********************************************** PRIVACY NOTICE: Warning – any person and/or institution and/or Agent and/or Agency of any governmental structure including but not limited to the United States Federal Government also using or monitoring/using this website or any of its associated websites, you do NOT have my permission to utilize any of my profile information nor any of the content contained herein including, but not limited to my photos, and/or the comments made about my photos or any other “picture” art posted on my profile. You are hereby notified that you are strictly prohibited from disclosing, copying, distributing, disseminating, or taking any other action against me with regard to this profile and the contents herein. The foregoing prohibitions also apply to your employee , agent , student or any personnel under your direction or control. The contents of this profile are private and legally privileged and confidential information, and the violation of my personal privacy is punishable by law. UCC 1-103 1-308 ALL RIGHTS RESERVED WITHOUT PREJUDICE
99 members

 

Closed Group
Planning an Arach get together or convention, possibly during the next FDA ESI Hearing this fall in DC
40 members
Public Group
3 members
Warren Howard is in this group
Public Group
This group is for those who currently have this disease or if you live with or know someone suffering with Arachnoiditis. My name is Celeste Turner, and I was diagnosed with this little-known disease May 2009. I wanted a place where other known sufferers could email, chat and maybe trade stories. There is such little known concerning this diease.
93 members

 

Closed Group
Bienvenue dans ce groupe de discussion désormais privé, créé et géré par l’AFMKT-France (Association Française de la maladie des kystes de Tarlov). Ce groupe dont l’objectif est de permettre à toute personne le désirant de pouvoir échanger sur le thème de la Maladie de Tarlov / Mega cul de sac / Kystes arachnoïdiens /Kystes Méningés et DVP) est modéré et administrer par 7 de ses membres. Ses Créateur Carrein Alain & Alvés Carolle qui ont fusionnez les deux groupes. Administrateurs : du groupe Carrein Lalain & Serra Patrice & Lixon Françoise & Alvés Carolle & Mayoral Véronique En demandant à rejoindre ce groupe vous vous engagez à respecter lors de vos échanges chacune des règles qui suivent sous peine d’exclusion : 1.Eviter le langage SMS 2. Rester courtois et faire preuve de respect les uns envers les autres 3. Ne pas utiliser d’insultes 4. Respecter la sensibilité des personnes les plus fragiles en ne postant aucune photos de lésions directement ici. 5. Ne pas citer de noms de médecins autres que ceux dont nous connaissont dans la mesure où ces autres médecins ne nous ont donné aucun accord pour que leurs noms ne circulent sur Internet. Utilisez dans ce cas les MP (messages privés) pour communiquer leurs coordonnées aux malades qui les réclament. 6. Ne pas se servir de ce groupe pour tenter d’arnaquer les malades. 7. Respecter et ne pas porter atteinte au travail de l’AFMKT-France et de tous ses membres bénévoles. 8. Dans le but de protéger ses membres, toute publicité est interdite sur ce groupe, qu’elle se fasse directement sur le mur ou via message privé. 9. Accepter sans discussion les décisions des modérateurs du groupe Ce groupe est désormais PRIVE. Cela signifie que seules les personnes inscrites sur ce groupe peuvent donc voir et lire ce que nous écrivons. Merci de votre compréhension, c’est dans notre intérêt à toutes et tous !.
670 members

 

Closed Group
The Arachnoiditis Awareness Challenge is a media campaign to spread awareness to the general public about Arachnoiditis, its definition, causes and symptoms, treatments, and the search for a cure. Its goal is to make Arachnoiditis so well known that medical professionals can no longer ignore those affected by it, and the general public is educated to the fact that anyone can be subject to this horrible condition. The campaign will consist of several components, yet to be decided on, that will be broadcast over electronic media, including Facebook, Twitter, Instagram, and YouTube, as well as more conventional media outlets.
13 members
Tammera K Heiberger and 1 other friend are in this group
Closed Group
To all who are victims of an arachnoid cyst, and supporters. A place to vent, talk about our problems, and just get to know each other and get support.
1,700 members
Public Group
A silent epidemic and bringing support, awareness and treatments to this part of state.
17 members

 

Closed Group
A place to share business ideas and to support one another in our home businesses. For those with Chiari, Arachnoid Cyst, Arachnoiditis, EDS-, MS, POTS, IH, Fibromyalgia, scoliosis – any sister conditions.
106 members
Closed Group
7 members
Dawn Gonzalez is in this group

 

Closed Group
This group was created for positive help for people who suffer from Chronic Pain. Please feel free to invite others that you know that might be suffering. But please be aware that this is a positive group only. Thanks and stay strong! ♥
123 members
James Combs is in this group

 

Closed Group
2 members
Closed Group
80 members
Claudine Goze-Weber is in this group
Closed Group
2 members

 

Closed Group
This is a DATING group designed for people with Arachnoiditis or MS , or any other Diseases, We all want to be loved no matter what is wrong with us , but when you have a life changing disease no one wants to be with you but worry no more , I opened this group because I have Arachnoiditis, and im single but when you find a girl or guy you really like and all is going well but you tell them you have a disease they run a mile well now you can find a loved one or a friend on here cos we are all in the same boat . the only rules I have are you HAVE to have a illness and you MUST respect others if you have any problems message me and I will sort them out confidentially unless you want me to post something for you THIS IS A USA/UK SITE ONLY sorry PLEASE STATE WHERE YOU ARE FROM WHEN CHATING TO OTHERS
3 members

 

Public Group
2 members
Closed Group
A place for people with Arachnoidits who want to seek God for help and healing, and to fellowship with other believers and encourage one another. Let’s share good information in here which will be helpful for others. Let’s pray for one another in Jesus Name. Amen.
5 members

 

Public Group
HALAMAN INI U/AJANG KUMPUL-KUMPUL PARA PEMBUAT PUISI, PEMBACA PUISI, PENIKMAT PUISI… WHATEVER LAH POKOKNYA TENTANG PUISI.
6 members
Closed Group
We are raising awareness for Arachnoid Cysts, regardless of country, border, origin etc. With a banded effort, we may finally get some recognition for this disorder. We have recently set this group to closed to help respect the privacy of our members.
110 members

 

Closed Group
15 members
Closed Group
Do you or someone you love have Arachnoiditis? You are not alone in this fight to live a quality life with this illness. Please share your stories, your medical experiences, and your life, with others that are in the same boat.
3 members
Public Group
3 members
Public Group
28 members
Closed Group
2 members
Closed Group
Tired of the waiting for your polish to dry while smelling the chemicals, but still want gorgeous nails? Try Jamberry Nail Wraps and discover the nail revolution. With an abundance of different styles to choose from, your nails will never be boring again! Current special is Buy 3 Get 1 Free! http://www.jamtasticnailsbyashley.jamberrynails.net
103 members
Public Group
Rare Spinal Cord Diseases — cause extreme chronic pain; there is no cure and Arachnoiditis is a progressive disease.
2 members
Public Group
2 members
Closed Group
Welcome to Amy’s Jamberry nail party/fundraiser! I’m so super excited that you have come to have fun while learning about stylish nails on a budget! Jamberry Nails are vinyl nail wraps that come in hundreds of styles. They are heat and pressure activated, so you can put them on yourself at home with a hair dryer or Jamberry Heater. They are nontoxic, non-chipping, non-fading, and much more affordable than salon manicures. Check out Jamberry and join the Nail Revolution! This party will run for 5 days, and you can order any time at stacimarie.jamberrynails.net and your order will ship to you right away, no need to wait for the party to close! Thank you for joining me!
1 member
Closed Group
This is an issue that needs so much more research on. This group was created to be a place of sharing information and supporting each other through the difficulties of Spinal Arachnoid Cysts, As I have learned there isn’t much information out there on this medical condition. There are a few guidelines we ask members to observe. Just share your story and help bring awareness to Spinal Arachnoid Cysts, If you have Spinal Arachnoid Cysts,, or a relative or a friend that has this condition….You’re welcome here. in fact, Please help spread the information about Spinal Arachnoid Cysts, I have personally suffered for many years with out being properly diagnosed. That has only added to the delay in medical care and added to my pain and suffering. Most group members here, have a serious medical condition so please be understanding.
4 members
Public Group
This page will be Launching an Awareness Challenge To the Public About arachnoiditis. Involvement Awareness Education Action Donation Research. are all the steps to raising awareness. there will be lots of all of these going on. join in a movement and make a difference.
5 members
Public Group
I’m a single mom with three wonderful boys. On April 20th 2012 a large Arachnoid cyst was found in my middle son Jaydens left temporal lobe. Ever since Jayden was an infant I knew he wasn’t like most children. We’ve battled with ADHD, defiance disorder bi-polar and a number of other behavior problems along with head banging scab picking and high tolerance for pain. He was headaches and extrem nasuea. Finding the cyst was almost a God sent things started to make sense. Than it was time to figure out what to do about it. On May 24th 2012 he had a feniatration. Basically it was a way to release pressure from the brain. For a little over a year and a half Jay was pretty good. In December 2013 things started to change back to the way things where before. So now we’re back at the hospital getting at shunt put in. I know Jayden will never be relieved of his cyst but I hope one day doctors and the rest of the world takes cyst serous because they do cause problems on so many levels. Just because it’s not a tumor or cancer it’s still brain damage and should be treated as that.
129 members
Closed Group
Many people suffer from chronic pain. It can be frustrating and sometimes difficult, but you can prevail! This group is for anyone with a chronic illness resulting in a life of pain. Whether you have Fibromyalgia, Arachnoiditis, DDD, RA, OA, Lupus, it doesn’t mater, you are welcome. We will do our best to keep knowledge coming.
2 members
Closed Group
ArachnoidGaming is all about showcasing the many styles of play and how effective they can be. We post videos of any and all games that the members own.
5 members
Closed Group
Many sufferers experience a myriad of symptoms which are ignored by the medical community. This group is for sufferers, their families and friends to tell the world how having an arachnoid cyst effects them. It is also a place were people can come and learn about the condition and help us change the opinions of the medical community. the medical health assosiation needs to stand up and take notice plse join if u suffer or know somebody who suffers with this condition and lets make the world health stand up and take notice,give us the help we need (All too often arachnoid cyst patients get turned away from hospitals, from doctor’s offices. This is only because our symptoms are not written anywhere in a medical textbook under “arachnoid cyst”. This needs to change, we shouldn’t be turned away when we are trying to get help! Some of us here can no longer work because of increased debilitating symptoms. Some of us have become severly disabled and can’t even do the day to day things most people take for granted. These cysts cause symptoms, and depending on their location, the symptoms can be of a wide variety. We are not making them up, they aren’t in our heads, and we need doctors that will listen to us instead of second-guessing us!)
642 members
Closed Group
Our stories before and after surgery of arachnoid cyst removal, no shunts, and it’s not fenstrated it’s completely removed!!
112 members
Public Group
9 members
Closed Group
This is a forum to offer support to people living with arachnoid cysts in the UK. Please use this page to connect and chat to people with similar experiences. Discuss symptoms, care and treatment. A place to make friends and support each other!
70 members
Closed Group
Este grupo no es sustituto de una consulta médica, su propósito es compartir información y brindar apoyo entre los miembros del grupo, cualquier publicación fuera de contexto o con falta de respeto hacia cualquiera de los integrantes será automáticamente eliminada incluido el publicante
3 members
Public Group
We are sick and tired of everyone blaming their abscesses on insect bites especially our beloved 8 legged friends! Face it folks……………….they didn’t do it.
3 members
Closed Group
Living day to day with arachnoiditis is a challenge knowing other people story’s may help us knowing we are not alone
2 members
Closed Group
This is a support group for people from Australia and New Zealand to speak with each other about experiences and outcomes doctors and opinions related to arachnoid cyst and disorders related to them
36 members
Public Group
I’m looking for others who have been diagnosed or have had their children diagnosed with a similar formation in the brain. My son just had one discovered in his temporal lobe and I am looking for more information and support. My son has also been diagnosed with ADHD and within the autistic spectrum when we were informed of this discovery. Any input would be welcomed.
3 members
Public Group
2 members
Public Group
Tempat ngumpul kembali Arachnoid Mania ‘A’ngkatan ‘R’eformasi ‘A’ndalkan ‘C’inta ‘H’ati ‘N’urani ‘O’tak ‘I’man dan ‘D’oa
2 members
Closed Group
Most medical textbooks tend to say arachnoid cysts, are incidental findings, but we beg to differ. Within this support group, you will find many of us share the same symptoms, so how can we all be wrong? This group is for people with arachnoid cysts, and/or their caregivers, to gather and share information to support each other.
9 members
Closed Group
We’re in this together. No matter how bad it can get from hearing voices in your head (you are tapping into other peoples psyche like someone with a bad heart feels a strong pulse) because these are like holes in our souls like a direct connection to the universe whichever god you believe in as long as it makes you a better person and not hate on others for their beliefs. There are so many problems that you have as you age such as trying to get a toddler to mind you or getting an adult to pay attention or having to repeat yourself over and over. Our bodies are cyst minefields and ironically enough we all have something going on with our sinuses and that’s how some people discover their “incidental” (hey look what I found! Neurosurgeon ‘It’s not causing your problems. It’s incidental.’)
5 members
Closed Group
166 members

 

Closed Group
1 member
Public Group
Pour tous les fans d’Arachnoid!
6 members
Closed Group
Hier können Fotos von Phasmiden, Insekten, Aranoiden, Mantiden geteilt und begutachtet werden. Da diese Fotos meist wenig Liebhaber haben 😉 Es wäre schön wenn zu den Fotos die jeweiligen Bildinformationen (EXIF’s) gepostet werden.
21 members

 

Closed Group
This Group is for all people who back in the early 1970’s who had Myodil Dye Injections into their Spine
4 members

 

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