I’m new here!
Hi, my name is jasper63. I'm here because I have Adhesive Arachnoiditis.
Anyone out there have (or know someone who has) an Epidural Pain Pump? Looking for any little nugget of info that any of you might have, regarding this pain management device. My pain mgmt doc also mentioned the Intrathecal Pain Pump, but because that one goes through the dura to deliver the medication, I’m SO not comfortable with that. A tear in my dura is led to my AA, so there’s no way I could go that route
Hi, my name is sdhibbs. I'm curious about , weather or not any of you that are living with arachniditis have had been on narcotics and if you have ever had them taken away cold turkey? if so how or what do you use to treat you pain?
Has anyone had successful Stem Cell treatment for their AA (or just Chronic Back pain)? I had Stem Cell treatment, but saw no improvements unfortunately. The doctor I went to first offered me a complete re-treatment if I could fly myself back to her location, but then she walked that offer back. #stemcell #AdhesiveArachnoiditis
Ive been receiving The Mighty newsletter for a few years and the other day decided to try out the App and your social platform. After some scrolling it looks like it will be a great place to share my experiences and in turn get some new insights into what ive been dealing with.
Im 55 years old and have four children that range from 28, 19, 17 and 15. Ive also had 8 spinal surgeries due to injuries i sustained at work. I've been disabled and retired since Dec 19, 2005- at 39 years old. Due to so much spine trauma ive now been diagnosed with Adhesive Arachnoiditis ( en.wikipedia.org/wiki/Arachnoiditis )
During back surgery #4 i lost 100% of my hearing in my right ear. Likely due to a blood clot. The loss of hearing quickly morphed into incredible Tinnitus. Im doing much better now and havent required my two canes to walk in a number of years. The Tinnitus is tough to adjust to though. Imagine someone screaming in your ear 24/7/365. My sleep was probably the most effected by my Tinnitus for about the first decade. Now i use my bluetooth headset when sleeping to minimize the noise.
In August of 2020 my wife and i learned that our two daughters suffered some horrific trauma from about 5 years old until about 9 years old. This trauma presented itself in many forms of Behavioral Health conditions as adolescent teens; eating disorder, Bipolar 2, anxiety, depression, suicidal ideation, Borderline Personality Disorder, OCD, self medicating and PTSD. And possibly more.
My younger daughter is participating in an inpatient treatment program right now as i type this. Shes had three failed attempts in 2021 and has been hospitalized numerous times.
My older daughter has suffered some traumatic health issues. In 2015 she had two back surgeries. One surgery was to relieve a chronic headache she suffered for about 7 months. The other to correct and stabilize her scoliosis. Then in 2018 she developed Narcolepsy that kept her sleeping about 18 hours a day. She missed so much school and her socialization amongst her peers really suffered, and continues to. Then in 2020 the Narcolepsy left as suddenly as it appeared. But the damage was done. Shes now a 5th year senior trying to get her credits caught up to graduate.
Im really hoping to get some valuable insight into the best parenting practices to help my girls live a fruitful and rewarding life. While sharing what has worked for me through my back pain. #Depression #OCD #Anxiety
What do you do?
Do you lie to give the person asking what they want to hear? Do you tell the truth, and face the uncomfortable silence that comes when the person asking, then doesn't know what to say? Do you avoid the question altogether by retreating, and avoiding human interaction?
Who knew 3 little words could be so incredibly impactful.
Having to write a story about myself is almost as painful at the disease that ails me… Ok, maybe not.
Well, yeah…DEFINITELY not.
Ok so here it goes. Best to start from the beginning I guess. The actual beginning that is, not the new start I am faced with now.
I was a drummer, almost literally from the day I was born. After ruining all my toys, and my Mom’s pots and wooden spoons, my folks put me behind a real drum set (that my Uncle graciously gave them for me). I played and practiced, and practiced and played.. and then landed my first gig when I was 8 years old, at the Union Plaza hotel in downtown Las Vegas. I started playing in bands and was gigging from the time I was 13, and was behind a drum kit nearly every day of my life, until my body failed me right around the age of 50. The amount of mileage I put on my body in those years was nothing shy of intense. You see, there are two types of rockstars in this world: The rockstars that tour the world, visiting city after city, and having roadies to haul their gear on and off the stages. The other rockstars are the ones who work a regular job each day, then get off work to go rehearse, record music, or also play late night gigs… and then turn around and do it all again the next day. I was the latter of the rockstars, and setting up my drums, playing the gigs, then breaking down my own gear night after night, took a hefty toll on my body. Many spinal injections and seven back surgeries later, I had to say goodbye to my best friend (drumming). As a bonus prize, I also ended up with Adhesive Arachnoiditis, so the pain I’d lived with for so many years, stepped up to a whole other level. My days are now a balancing act of pain management, depression management, and figuring out what my life is now.
I take it all day by day (often minute by minute depending on what the pain says that day), and just make sure I show up for the ones I love, who have not given up on me, even when I sometimes have.
It’s like starting over. Figuring out who and what I am now.
Wrote this recently. Wondering if you relate??
To those suffering with Autoimmune Disease, Rheumatic Disease, Chronic Disease/Illness and Pain. You have probably felt this way too many times when seeing a GP or Specialists. They say you look too good, you’re not sick enough and not in enough pain. If you don’t look good, you’re not trying hard enough or your pain can’t be too bad.
Be you, do you and if you get treated badly don’t get sad, angry or frustrated in front of them. Yeah, secretly you can yell, scream and cry. But first, just get up like the Warrior you are, walk out the door and go to the next doctor who listens and treats you the way you deserve.
It’s not an easy journey, and there will be many walk out moments. You will suffer physically, mentally and emotionally. If you’re lucky, a diagnosis may come quickly but in reality it can take years before you get the right diagnosis. In the end you will never be the same in so many ways, especially physically. However, you will learn to accept your new life and make peace with the disease that took so much away from you. You will be amazed looking back on how much you have learnt and grown since the beginning of your journey. Your new found strength, determination and courage made you the Warrior you now are. (Written by: Charmaine Innes from the Mighty App)
Why YOU ARE a Warrior
Your fighting a war you cannot see with you body everyday. You are constantly faced with challenges and obstacles. Brave, strong, fearless fighter you possess the determination, courage and inner strength to fight a fight you didn’t ask for, or through no fault of your own.
Because so often, getting through the day requires a fight. A fight for treatment, a fight for understanding from friends and family, a fight to keep up with the demands of work, life or parenting and a fight to complete every day tasks people take for granted. Every day life can feel like a daily battle when you have a Chronic Illness/Pain, Rare Disease, Rheumatic Disease, Autoimmune Disease and Mental Health. (Written by: Erin Migdol from The Mighty App)
In honour of someone who is fighting Chemically Induced Adhesive Arachnoiditis, Adhesive Arachnoiditis and Arachnoiditis, Rheumatoid Arthritis, POTS, MCAD, Sjogren's, Scleroderma, Hashimoto Disease, Ankylosing Spondylitis, Fibromyalgia, Lupus, Sarcoidosis, Hepatitis, Raynauld's Syndrome, Diabetes, Mold Illness, Celiac, CROHN’S, Ulcerative Colitis, Pemphigus, SPS, MS, PBC, Psoriatic Arthritis, CIDP, MMN And GPA.........