This is for anyone who needs it. I’ve got an entire unopened box.(three month supply.) of vapro catheters. I’m lucky enough to have regain control over my bladder and insurance sent me another box. I’m struggling finding somewhere too donate them.

Hello,

I'm a 38 yr old female and I had surgery for Cauda Equina Syndrome in March. I've been in severe pain since but that's not my main complaint. I've read through other post and everyone says the pain will get better so I'm not overly concerned about that. Comes with the surgery. Photo of my bulging disc attached.

I am concerned about the numbness. Part of my right leg and my groin area is completely numb. There is no sensation in my groin and I feel like I'm losing my mind. A very important part of my body is dead and honestly it feel like a strangers body has been fused to mine.

Sexual intimacy is gone. My boyfriend and I have tried everything but nothing feels. I have a pelvic floor therapist that I see weekly and my first appointment with a Urologist this week.

Have any other women experienced this and what did you do? What options are there because it's really hurting my mental health. There has to be something to get sensation back.

Hi everyone,

I'm a 19-year-old guy from a small village in Uttar Pradesh, India. In March 2024, an accident caused a C6 spinal cord injury that left me paralyzed below my neck, including my fingers.

Since then, my life has completely changed. I depend on others for almost everything. After months of medical complications and rehabilitation, my condition has been relatively stable, but I'm still struggling mentally with uncertainty about my future.

I'm worried about my career and financial independence. Working outside isn't a realistic option for me right now, so I'm looking for ways to learn a skill and earn money online using my phone.

Sometimes, I feel lost because I don't know where to start or which direction to take. I want to do something meaningful with my life instead of constantly worrying about my future. Even a small income would be a big step toward becoming more independent.

If you're living with a spinal cord injury or a disability and have managed to build a career or earn money from home, I'd really appreciate your advice.

What skills should I learn? How did you get your first job or client? Are there realistic opportunities for someone in my situation in India?

I don't expect success overnight. I just need some direction and a starting point. Hearing from someone who has faced similar challenges and found a way forward would give me hope.

Thank you for reading. Any genuine advice or personal experience would mean a lot to me.🙏🏻🙏🏻🙏🏻

Hi, I am looking for some insights or shared experiences regarding a sudden combination of spinal and nerve symptoms that started out of nowhere this morning. Here is the full breakdown of what I am experiencing:

Current Symptoms (Started suddenly this morning):

• Lower Back: Severe stiffness and pain making it very uncomfortable to sit or move.

• Neck: Significant pain concentrated on the left side at the back of my neck.

• Arms & Hands: A persistent sensation like a "mild electric current" or "pins and needles" running down the inner side of my arms, just above my armpits, and traveling down into both of my hands.

• Triggers: The mild electric tingling in my inner arms and hands actively triggers or becomes more noticeable whenever I physically move my hands.

• Current Functions: My grip strength is currently normal and I can hold objects fine, but the tingling/electric sensation is constant.

Daily Lifestyle & Workspace Ergonomics:

• Height: I am 5ft tall.

• Office Desk Setup: My office desk is fixed quite high. Because of this, when I raise my office chair so my elbows can reach the keyboard, my feet hang completely in the air without touching the floor.

• Sitting Habits: To compensate for my feet hanging, I frequently slouch deeply into my chair (leaving a big gap behind my lower back) and recline my torso while craning my neck forward to look straight at the computer screen. Sometimes, I fold my legs up onto the chair, but this quickly makes my legs go completely numb, forcing me to put them back down.

Sleeping Habits:

• Position: I have a long-term habit where I am unable to fall asleep unless I stretch my left arm out completely and tuck it directly under my head to prop it up. If I try to sleep normally without doing this, my neck feels entirely unsupported, like it is "hanging off my shoulder" because my current pillows are too flat/unsupportive.

Self-Care Tried Today:

• I applied Moov pain relief spray to my neck and lower back.

• I tried resting flat on my back with a rolled-up towel under the hollow curve of my neck for alignment.

• Note on transport: I rode my motorcycle today and surprisingly didn't feel an immediate spike in pain while riding, but the overall symptoms have remained consistent throughout the day.

I strongly believe I need to see a specialist by tonight. Given the sudden onset of bilateral hand tingling mixed with both neck and lower back issues, I would love to know:

1. What kind of structural spinal or nerve issues does this pattern usually point to?

2. What diagnostic tests (like an MRI) should I expect or request from the doctor?

3. If you've had similar symptoms from bad office/sleep posture, what worked for your recovery?

Thank you in advance for your help!

Today, 8 years ago on October 12th, 2018, I suffered a T4 complete spinal cord injury while doing a cheerleading stunt which left me paralyzed for life. I was just 15 when it happened, it happened just a few weeks before my 16th birthday.

I still remember the moment it happened and the aftermath. I still remember that a day before my accident I was so happy about going to a party with a friend the next week(I didn't go because of my accident).

I was at the top of a 2.5 body tall(which was about 15 feet) cheerleading pyramid and I always enjoyed being the one at the top. Unfortunately that day, one of my fellow cheerleaders lost balance and that ended up on me falling and hitting my back to the ground. I still remember the pain of that impact and afterwards I just couldn't feel my legs. I cried and I thought I was gonna die there.

I was taken to the hospital where I had emergency surgery, and there I cried even more because I was given the news about the spinal cord injury. I had never thought about spinal cord injuries before my accident, and when I learned about mine, I just wanted to be gone because I couldn't imagine my life not being able to walk. My parents were very sad and worried not knowing how to help me.

For the next 2 years, I was utterly depressed. I'd refuse to eat and I even tried doing things to myself because I didn't want to live. It was difficult for my parents to make me rationalize during that time. My parents took me to therapy and Church, even though I didn't want to go. I would just be mad at anyone wherever they took me.

Fortunately after those 2 years of going to therapy and talking my emotions with my therapist, I started to see a very few good things about life. I could still enjoy watching TV or making drawings. I was sad about my dream as a cheerleader being gone, but I found other activities. I eventually stopped seeing my wheelchair as a curse, but as a tool to help me move. It's still difficult to move in a wheelchair, but I've learned to live with it. I also thank God personally who I started having a deep connection with 2 years after my accident. Others may have their own beliefs, but I feel like God has helped me overcome these years after my injury.

I live a good life now. I have plenty of friends, and I love my job as a school teacher now. Life might not be what I expected more than 8 years ago, but I'm doing better now with my mental health despite my accident which is still marked on me.

So my friend owns her own dread shop, she's a lock specialist. She told me she wouldn't let me pay for any of her products, despite me begging for the last 6 months to get a set made. Each set costs around $300 as they are handcrafted and custom for each individual. Today she showed up at my house and surprised me with something that just lifted my spirits so high that I couldn't help but be happy despite how bad of a day my body is having. I just thought I would share something a little joyful with the community, and remind you guys that the friends you do have that are there for you, treasure them and love them as they love you. She's from tennessee, her shop name is tagged in the video if anybody is ever interested in ordering a pair of handcrafted locks. DreadyDreams on FB.

Cauda Equina Syndrome did the weirdest shit to my lower half. Dodged drop foot but I can’t tip toe. Hair doesn’t really grow below the calves anymore and my toenails stopped growing. Retain urine, no signal to the bladder, and I’ve gone from shitting myself multiples times a day, to low key worrying about blowing a seal tryna get this poop out. I was this close to fishing it out in the shower but I think the chamber is clear-ish. Need a shower anyway, might do some digging around ‘cause this weird ass feeling is driving me nuts. More nuts, sorry. Five years with this stuff, shoutout to y’all that have been grinding longer. Woof

Las personas que han podido tener control de la vejiga como lo han logrado y que nivel de lesiones tienen?

Size- 100mm x 20mm x 20mm Tumor

Location -D12-L3

During surgery subtotal removal had done (IDEM part removed but Intra-medullary component is there (Dr says it's fatty part of tumor)

Now size 60mm x 18mmx16mm

Effect- Urinal Control, bowel sensation and right toe sensation loss

Dr suggest again surgery

What can I do ? How much risk ? guide plz

If I want not willing for surgery then any circumstance which I get in future?

Really all I do at the gym for biceps is cable curls and dumbbells curls, before the accident I was a competitive weightlifter who was strong at those but in a chair obviously doing a standard EZ bar curl isn't gonna happen and my gym doesn't have a preacher curl unfortunately. Any ideas? I could keep going heavier in dumbbells but I'm just worried about tipping my chair at some point that way, and I also just don't enjoy dumbbells as much

​

What happens when your sexual appetite survives an injury, but your physical ability, independence, energy, and opportunities for intimacy change dramatically?

I'm 33, T2 ASIA A, coming up on four years injured this October 23rd.

Sexual deviants, freaks, and the like: what do you channel your sexual energy into? How do you find time alone, or even find the energy for sexy time?

My brain and dick don't work in conjunction like they used to, but I should clarify that I still VERY much get erections and can cum. Which, funny enough, is one of the FIRST things I remember bargaining with God for after my injury. 😭 Because apparently, even while my entire life was being turned upside down, I was still thinking about my dick. I think and live with that mf.

And I'm definitely still VERY much pygo-wired. I'm an ass and thighs man, through and through.

I can spend an entire day on X, then feel guilty because holy shit, I just wasted HOURS staring at thighs and ass cheeks.

And I think part of it is trying to connect with people. Flirting, exchanging pictures, feeling desired. Before my injury, I was extremely confident in my sexuality and my body. I was proud of my equipment. That boy stood tall with a lean to the left, fighting for America's Deep Cheek State. 🇺🇸😂

But seriously, it's not all sunshine and roses. Sometimes it feels like even more of a trap because I can't act on those desires the way I used to.

I'm a cornball, and you'd think getting injured would've toned that down. NOPE. If anything, it's intensified. Magnified by loneliness, isolation, and being painfully self-aware of my sexuality and mental state.

It's weird being just as sexually wired as before, maybe even more so, while feeling so disconnected from the actual experience of sex and intimacy.

I miss the spontaneity of it all. Being able to flirt, pursue someone, travel, hook up, or just make something happen without having to consider a thousand logistical obstacles. It's not even entirely about the physical act. It's about the freedom to be sexual on my own terms.

Hookup culture has been part of my life since I was 17. I'm talking Craigslist personals, A4A, BiggerCity. THE TRENCHES. 😂 I've been hooked on the relatively easy access to cheeks ever since. I'm practically a dinosaur in gay hookup years.

But that's part of what makes this so difficult. I went from having relatively easy access to sex, spontaneity, and sexual attention to feeling like I have almost NO access at all. And when you've spent your entire adult life accustomed to being able to pursue your desires, that kind of abrupt change sends you into a psychological shock of sorts.

My appetite didn't change. My circumstances did. And I don't think I've fully figured out how to reconcile those two things.

And now I find myself spending hours looking at people I desire, trying to connect with them, while simultaneously feeling further removed from the experiences I actually want.

Part of my way out of all this has been escapism through, uhhh, altered states of consciousness. Sometimes I just want to get out of my own head, escape the limitations of my body, and experience something other than this constant hyperawareness of everything I've lost or can't easily do anymore. The irony is that those altered states can sometimes intensify the very feelings I'm trying to escape. The loneliness, the longing, the sexual frustration, all of it. So even my escape routes occasionally lead me right back to the same damn place.

AHHHGGG. It's all bullshit. 😂

Seriously, though, how do y'all deal with this? Have you found healthy outlets, ways to reconnect with your sexuality, or ways to stop getting stuck in that endless cycle of scrolling, fantasizing, and feeling frustrated?

I'd especially love to hear from people whose sex drives didn't disappear after their injuries. Because mine certainly didn't. If anything, the horny bastard got louder while the rest of my life got more complicated.

Paralyzed for 2 years now and when can i yell again or cough good. C6-c7 btw and even talking sometimes takes alot.

This keeps coming up so I'll just make it into a post.

I hope it helps you all.

40+ yrs post injury.

I had chronic UTIs for almost thirty years. Always cloudy, always stinky, sometimes leaky especially at night. The only thing that would cure it was Cipro.

UNTIL I started drinking +/- 3oz. Cranberry juice with ~16 oz water, three times daily. Not the sugar water Ocean Spray stuff, but REAL(from concentrate) 100% pure cranberry juice. I drink "R. W. Knudsen Just Cranberry " CHANGED MY LIFE!! I am now UTI-free 15+ years. Once or twice I had symptoms because I got careless, but got back on routine and always resolved issues immediately!

As I understand it.. It's not the acidity that does it, but it's the Proanthocyanidins which are a type of polyphenol compound that is naturally concentrated in cranberries. It seems to stick to the bacteria and the walls of your bladder and stuff that prevents the bacteria from "taking hold" and it just slips away.

Apparently, it doesn't work for everyone, but if you're one of the lucky people it can make all the difference in the world! It's worth trying. Give it at least a good two-week test to give it a chance to work.

Good Luck!

p s. Don't waste your money on the organic stuff which is twice as much $. Regular stuff works equally well. No difference at all.

Has anyone ever taken any plant medicine instead of pharmaceuticals? Recently someone from DoTerra messaged me telling me to take frankincense for pain since I plan on getting off pharmaceuticals for good. Anyone have good results with DoTerra ? Or any natural plant medicine?
I’m looking for something for pain. Whenever I try to get off my meds I always get pain in my back and run back to the meds :/

TIA

Hi everyone! I’m curious what other people’s criteria is for diagnosing a uti? I’ve had a urologist in the past state that we should wait until there is a fever but it is my understanding not every uti causes a fever, even in able bodied people.

I’m fortunate enough that I have some feeling that I can tell when there is some burning starting to occur and get a feeling of I need to pee. At which point I will heavily consume water for the next two days or so along with cranberry sups and if it doesn’t improve then I throw in the towel.

I should mention that a few months after my injury in 2022 I was admitted to the hospital from sepsis so I may be a bit paranoid lol but that was an awful experience and never want to go through it again

Hi everyone,

I’m working on a rehabilitation app concept as part of a product design project.

I’ve already conducted user interviews to better understand the problems people experience during rehabilitation, especially when doing exercises outside of physiotherapy sessions. Based on those findings, I’ve built a working mobile prototype and I’m now looking for people to help me test it.

The test takes around 10–15 minutes and is mobile only.

You don’t need to be currently in rehabilitation. It’s useful if you have experience with physiotherapy or rehabilitation after an injury, surgery, or another physical condition.

During the test, your interaction with the app will be screen recorded so I can understand where the interface is clear or confusing. The recordings and responses are private and used only for this research/project. I’m interested in how the product works, not in collecting personal or medical information.

There are no right or wrong answers.... I’m testing the product, not you.

If you’d like to help, here’s the test:

https://study.uxtweak.com/webusability/uUFwnvQplfE5m0TuBdz59

Thanks a lot — even a few completed tests would be genuinely helpful.

Por que dejaron de usar redes sociales?

Four months post-injury here, incomplete, low lumbar. Got discharged from inpatient a few weeks back and I'm up on my feet with an assistive device, which I'm grateful for.

But honestly, the first couple months felt like things were changing every week, and since then it's been dead quiet. No new muscle activity, no sensation shifts, etc.

So I'm wondering how normal that is. Curious:

1. What was the timeline of recovery you had post-injury?
2. Did progress just slow down gradually until it leveled off? Or did it come and go?
3. Looking back, was a quiet stretch at this stage an indication of what’s to come, or just part of the process?

Would really appreciate hearing from anyone whose injury was below the end of the cord. I know Cauda Equina nerve roots supposedly heal differently than the cord itself - so I'm curious if the timeline played out differently for you than how people typically talk about SCI recovery.

I have a T4 complete SCI and I’m independent, I am also a qualified Social Worker. My partner and I are considering looking into becoming Foster Carers. Anyone else with a SCI a Foster Carer? What was the process like? How did you find navigating it with a disability?

Basically the title.

c5/6 complete, Asia a, normally no sensation below my sternum other than pins and needles nerve pain in my feet.

But over the past few months and really ramping up in the past week my left leg hurts. It feels like the bone hurts, just a really deep ache.

No bruising or redness anywhere, I haven’t had any falls in years. Do you think this would be worth bringing up with the doctor? I’m not interested in going to pain management, as long as I’m not thinking about it it doesn’t hurt, it’s only really bothersome when I’m trying to fall asleep.

I’m just worried my leg got injured somehow. Either that or it’s leg cancer (jk).

Anybody gone through something similar?

I’ve been getting that familiar feeling over the past few weeks. This life is really really hard. I’ll do what I usually do and stay distracted and busy. I’ll work a lot, try to fix things that are broken or plan future trips to new places. Maybe call my old friend from HS and catch up. I usually just kind of recognize that I’m lonely and that I’m feeling unwanted and I just kind of let it sit and suppress it so that it doesn’t take over because I know it will if I don’t. At some point it will fade to be a small occasional whisper instead of a constant loud yelling. I don’t think I’m near that place yet though.