Adhesive Arachnoiditis

Hi, my name is BrendaDowell.

#MightyTogether #AdhesiveArachnoiditis

Hi, my name is MissyDoxielover2.

#MightyTogether #Fibromyalgia #Depression #Anxiety #Migraine #AdhesiveArachnoiditis

Hi, I'm Julie. I'm a writer, a retiree, and someone who has been diagnosed with adhesive arachnoiditis. I'm looking for ways to increase public awareness and to find community.
#Arachnoiditis #ChronicPain #RareDisease #spinesurgery

Hi, my name is jasper63. I'm here because I have Adhesive Arachnoiditis.

#MightyTogether #Arachnoiditis #AdhesiveArachnoiditis

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

Any thoughts on the epidural device though?#AdhesiveArachnoiditis #painpump

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?

#MightyTogether #AdhesiveArachnoiditis

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

Hi, my name is KimNakoff. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether

#EhlersDanlosSyndrome

#AdhesiveArachnoiditis #CRPS #TarlovCysts

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.

#AdhesiveArachnoiditis #howareyou #ataloss #threelittlewords #conversationkiller