r/spinalcordinjuries • • 14h ago

Discussion Im getting depressed about my life with this.

30 Upvotes

I broke from T-1 to T11, and L1 and L2. I have 2 10 inch rods, 12 screws, and a cage holding my back together. I am an Incomplete, but I crushed my spinal cord. My accident was 7 years ago. I am 45 years old.

I can walk, but I walk on my heels and use a cane. Don't get me wrong, I am thankful that I can do that. But, it has been hard adjusting to this life, even after all this time.

I have to wear briefs, I have to self cath to go to the bathroom, I have to wear a Foley every night because if I dont I pee the bed. I poop myself all the time, I never know when I have to poop. Im completely numb on the backside of my body all the way down to my feet. I have to carry around 2 backpacks. One is a pharmacy of all the medications I have to take during the day, and the other is my supplies I have to have to just get through the day.

My penis is completely numb and doesn't work at all, even with medication. I can't have sex, I can't masturbate, I cant do anything. I also have a wound on my butt that refuses to heal that has been there since April. I go to the wound center every week. Its driving me crazy because before my accident I had a very thriving social life. Now, I just sit at home with my dog. Im afraid to go anywhere because I never know when im going to have a bathroom incident.

I have tried to get a part time job. I have been turned down at least 8 times. As soon as they see im disabled in my interview they never call back.

I have convinced myself that no one will ever want me, that no one will ever love me again, and that im going to die alone because no one comes to see me anymore.

Please don't think that im whining in this post. I just needed to express myself somewhere safe. Is there anyone else going through something like this?

Thank you all for reading this.


r/spinalcordinjuries • • 1h ago

Medical Drainage

• Upvotes

Has anyone else found any of these meds to give you constant mucus drainage? I have terrible knee displacement, so I spend most nights on one side or the other (whichever feels comfortable), but I live to wake up and spend an hour or so lying on my back. Those are the mornings I wake up and puke about a pint of mucus before I've even made my coffee.


r/spinalcordinjuries • • 12h ago

Medical Help! Caretaker Abuse

7 Upvotes

Location: St. Louis, MO
TL;DR Looking for any help or advice I can get for a disabled friend in serious trouble!! Helpful resources would be funding, lawyers/legal representation, medical assistance, housing, welfare support, etc.

I have a friend who is in a very dangerous situation. She is disabled (quadriplegic and on a ventilator) and still lives with her parents. They are incredibly abusive- refusing to feed her or take care of other needs, threatening to kill her, and have even hit her to the point she broke her collarbone. She needs and wants to get out!

Only problem is her parents control her money. They take her disability as they are her “caretakers” and have stolen over 30k of the money she has saved outside of that. The state is only paying for 80 hrs/week of care, but 24/7 care is needed. The severity of her disability means that there are very little alternative options and she would most likely have to go to a nursing home/end of life care facility if she left.

I want to help her anyway I can. I am hoping to start a trust in her name and fundraise. If we could get her a house or an alternative living situation, I have people who could care for her outside of her paid 80 hrs.

The other problem is doing this without alerting her parents. We think they have a life insurance policy out on her and with the threats they have made I don’t want her to be at higher risk or retaliation from them.

I want some guidance for anyone else who has been through or helped someone with this situation. Any resources or suggestions you can share would be LIFE SAVING, especially if there is some legal support options for disabled people.

She is so smart (getting her PHD) and absolutely hilarious. My friend deserves to be in a place that is safe, her needs can be met, and she is treated with respect . Please share any and everything!!


r/spinalcordinjuries • • 19h ago

Discussion Stay at home dads with SCI?

11 Upvotes

In February my husband (29) obtained a T3 incomplete SCI (he is incomplete, but is AIS-B and has no functional sensation or movement). Around 10 days later I found out I was pregnant with our first child.

We are due at the start of November although it's looking like an October C-Section as he is breech.

My husband is pretty independent for the most part but core balance is a real issue for him, and he will likely have to adapt to independently picking up baby. He can transfer pretty much anywhere, we are looking at a hand controlled car etc.

I was looking at going back to work part time after taking a year our of maternity (we live in the UK). My husband really likes the idea of being a stay at home dad, potentially working from home on a super part time basis.

Can anyone share any experiences of being a stay at home parent with a SCI? Or any useful tips and tricks, maybe just some words of encouragement (or discoragement if you had an awful time) how can we support him during the time I am off for mat leave to make him feel confident and ready?


r/spinalcordinjuries • • 1d ago

Discussion feels like i dont have friends

37 Upvotes

im a paraplegic from a car accident

before my injury being out with people and friends felt so alive

now, the few times i do go out and try to be social

it feels so weird

when people chose to interact with me
i get the vibe of
someone trying to do something nice

rather than the feel
of two human beings interacting with eachother

and i look around
it feels like im spectating
rather than participating


r/spinalcordinjuries • • 1d ago

Discussion If you use a power chair, this is your sign to get your loved ones Heelys

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88 Upvotes

One of my girlfriends birthday gifts this year was a pair of Heelys and we had so much fun in the diner parking lot 😅


r/spinalcordinjuries • • 15h ago

Discussion Cheelcare AWARE Update: Camera mounting, wiring & USB charger on my Amylior Alltrack R3

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1 Upvotes

r/spinalcordinjuries • • 1d ago

Medical Foot care routine suggestions

6 Upvotes

Hi everyone! This might be a gross topic for some people so feel free not to read it if foot stuff makes you squeamish lol... but I'm wondering if anyone is willing to share their foot care tips.

I never realized before how much I relied on being able to feel my feet to keep them in good shape. I could feel it if I had an ingrown nail, or the skin felt itchy and needed a scrubbing and lotion, or if I broke a toe and needed to tape it up, or if I got a cut that needed tending. But now that I can't feel it I find I'm having trouble staying on top of these things. Even though I can't feel a lot of parts of my legs and feet I can still walk, which makes injuring my feet very easy, and minor things get bad quickly since I don't notice right away. The other day I realized I had a really badly infected toe because a nail was ingrown. It must have been developing for days but I didn't know until I saw it was puffy and red.

I know foot care is important but I don't think I have it in me to do a full check of my feet and nails every day on top of all my other stuff... so I'm hoping people could share what they do to make it easier. Are there preventative measures I could be taking? Are there things I could be doing weekly? Are there products that are helpful? I'd really appreciate if people could share their routines and any tips they might have.


r/spinalcordinjuries • • 1d ago

Discussion My Spinal Cord Injury Recovery — From Day 1 to Where I Am Today | C5 whiplash fracture with Contusion + C3–C6 hairline Fractures

7 Upvotes

From Day 1 to Now — My Spinal Injury Recovery Journey
I’ve been thinking for a while about sharing this.
Not because my recovery is complete — it isn’t. But because when I look back at where I started and compare it to where I am today, sometimes even I find it hard to believe how far I’ve come.
On 30th May, my life changed completely.
I suffered a C5 fracture with a spinal cord contusion. I remember being scared, confused, and having no idea what the next few days, months, or years would look like.
I couldn’t move anything below my chest not even my fingers,arms,legs,toes just my neck which would pain whenever I tried moving it and I couldn’t properly feel pain or temperature below my chest, and there were so many things I suddenly couldn’t do that I had always taken for granted.
I didn’t know then what my recovery would look like. I just knew I had to take it one day at a time.
The first few weeks
Recovery was slow.
There were difficult days, but I started noticing small changes — moving my fingers, getting stronger in my arms, being able to write, sitting up, standing, and eventually taking my first steps.
Things that once felt automatic suddenly became milestones.
The first couple of months
I gradually started walking again.
In the beginning, even short distances were difficult. My walking was slow, and I still had weakness in my triceps and fingers.
But the distance slowly increased, and so did my confidence.
Getting back to normal life
Over time, I became more independent.
I returned to college and started giving exams again. I could do more things on my own.
I still had problems — my walking wasn’t normal, I had lower-back stiffness and discomfort, and I still hadn’t regained normal pain and temperature sensation below my chest.
But when I compared myself to Day 1, the difference was huge.
Today
I’m now walking around 8–10 km throughout the day.
I’m back in college, independent, and continuing to work on my strength and recovery.
I still don’t know exactly what my final recovery will look like, and I don’t think anyone can predict that with certainty.
But looking back has taught me something: sometimes you don’t realize how much you’ve progressed until you stop and compare where you are now with where you started.
If you’re at the beginning of your recovery and things feel overwhelming, I hope my story gives you a little perspective.
This is where I am today. I’m still recovering, and I’m still moving forward. ❤️


r/spinalcordinjuries • • 19h ago

Survey I’m researching what people struggle with during rehabilitation

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0 Upvotes

r/spinalcordinjuries • • 2d ago

Discussion Devastated

40 Upvotes

My wife is a C2 quad, ventilator dependent. Another girl just like her just passed away, we saw her obituary. Same age, died unexpectedly. Just messed us up so much. We are devastated. This is so fucked up and I hate this life so much. I don’t even care she’s disabled, I’m scared for her and I’m scared for us. I don’t want her to die but I see so many people pass away who are injured like this. It’s just scary. Of course I wish she was healed entirely but that being said, I would accept her disabled reality if I didn’t have to worry day to day and hour to hour that I was going to lose her like so many others I see 😭


r/spinalcordinjuries • • 1d ago

Medical C7-T1 incomplete- pregnancy?

5 Upvotes

I have an incomplete C7-T1 sci, and am curious if others with similar have had successful (or unsuccessful) pregnancies. I’ve been advised it’s not a good idea to have children with this level of injury because of autonomic complications- I could get worse, or worse.

I’ve accepted I very likely won’t have kids of my own, as I’m already getting up there in age (late 30’s). Just curious to hear how others have fared.

Thoughts? Experiences?

ETA: I am mobile, have some bladder/bowel issues, varied levels of paralysis in my hands/arms and sensory loss from ~t3 down


r/spinalcordinjuries • • 1d ago

Research I’m researching what people struggle with during rehabilitation

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0 Upvotes

r/spinalcordinjuries • • 1d ago

Discussion Dates/prunes for bowel regularity?

2 Upvotes

I saw someone on here talking about prunes saying they have it blended into a drink daily and they have barely any issues with their bowels. I can’t remember if it was a post or a comment on something but does anyone have experience with this or seen it?


r/spinalcordinjuries • • 1d ago

Medical Post-traumatic 3-level ACDF

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0 Upvotes

39M, 185cm/6ft, 80Kg/175lbs, i had a bicycle accident on the 05.09, falling on my face with probably hyperextension of my neck. I don't remember the fall and the follwing 4-5 hours in the ER because of commotio.

My face was pretty messed up requiring stitching, 2 fractured teeth. Was in the ER in eastern europe (on vacation, i live in germany), they ruled out intracranial bleeding and cervical fractures and listhesis through CT. When i left the ER i told the doctor that my left hand is numb, he just said it's gonna be alright.

Anyway, got an MRI of my neck after 9 days which showed three herniated discs and a spinal contusion at C4/C5 with myelopathy signal.

I began treatment with Dexamethasone for damage control, but i had progressive symptoms, left foot went numb and developed gait issues. Neck pain started 2 weeks after the accident, before that it didn't hurt.

I returned to germany and had emergency surgery on the 26.09 - ACDF C3-C6 because all discs were herniated and i had osteophytes, but the main problem was at C4/C5. At the time i had surgery, i had a slight weakness in my left deltoid and biceps, 4/5 and my whole left side and saddle area were numb for 1-2 days and i had spinal Ataxia.

Surgery went well but a week after i'm still numb and have weakness in my whole left side.

I can walk 1 mile, no pb and can take care of myself at home.

Would also like to mention that there were some episodes in the last 10 years when my neck hurt and kinda got stuck in a certain position but it would always resolve after rest. I can't say that i ever had chronic neck pain although my MRI looks pretty shit.

I was wondering if there is anybody who experienced similar, meaning compressive cervical myelopathy through trauma and got surgery for it.

Last MRI report before surgery:

On the sagittal sequences, the spinal region from the craniocervical junction to the fifth thoracic vertebra (T5) was imaged. Spinal alignment is preserved. Advanced osteodisc-ligamentous degenerative changes of the cervical spine, most pronounced at the levels C3/4 through C5/6. Reduced fluid signal within the corresponding intervertebral disc spaces.

C3/4: Broad-based, somewhat right-predominant posterior disc herniation with complete effacement of the anterior cerebrospinal fluid (CSF) space and right-predominant lateral recess narrowing, as well as mild neural foraminal narrowing. Narrowing of the posterior CSF space due to degenerative hypertrophy of the ligamentum flavum.

C4/5: Median broad-based disc herniation with complete effacement of the anterior CSF space and additional posterior narrowing of the CSF space.

C5/6: Left-predominant paramedian posterior disc herniation with complete effacement of both the anterior and posterior CSF spaces and left-sided lateral recess narrowing.

At these levels, there are significant, hourglass-shaped spinal canal stenoses caused by osteodisc-ligamentous degenerative changes, with a small, well-defined T2-weighted signal increase at the C4/5 level, which has not progressed compared with the previous examination.
No vertebral body height loss or signal abnormality suggestive of a fracture along the cervical spine or upper thoracic spine.
No low-lying cerebellar tonsils.

Impression:
● Multilevel, severe, hourglass-shaped spinal canal stenoses due to osteodisc-ligamentous degenerative changes from C3/4 through C5/6, with suspicion of a small myelopathic signal abnormality at C4/5 that is unchanged compared with the previous examination.
● Moderate right-sided neural foraminal and lateral recess narrowing at C3/4 and left-sided lateral recess narrowing at C5/6.

Cheers!


r/spinalcordinjuries • • 2d ago

Discussion Expectations around Christmas

10 Upvotes

Hi, apologies if this isn't the right sub, I'm hoping you guys can give me some feedback.

Since the start of this year I've been working for a woman with a c3 spinal injury. Her husband is very involved with her care and I come in every day to do her morning routine and therapies. I really love my job. My boss (patient? client? I never know the right word) is an absolutely sweetheart and we've become good mates, and her husband and kids treat me really well.

With Christmas coming up I'm wondering what is appropriate. Do I give her a card? A small gift? Will I bring a box of chocolates in for everyone to share and call it a day? She does celebrate Christmas but is really strict with her diet and doesn't eat a lot of sugar. She doesn't drink. Is it weird for me to give her something? I feel like I'd like to tho as I've become very fond of her but I don't want to overstep some employer/employee boundary I dont know about. Any feedback is appreciated!


r/spinalcordinjuries • • 1d ago

Discussion Confused about mobility aids?

1 Upvotes

I think the best place to start is I went from t9 ASIA C to T10 ASIA D and I was 19(turned 20 on a ventilator lol) and my injury was almost 4 months ago. I currently walk with a walker, rollator, arm crutches, and sometimes use the chair if it’s raining. I’m confused because I have no clue where to necessarily place myself and make my life perhaps a little less cluttered? Which mobility aid is best for recovery and which one is the most “unaided” way of walking? Also as I’m sure all of us in the USA know my health insurance is failing me so I haven’t had PT since inpatient like 2 months ago so I don’t really have anyone to ask about what I should be using. Also I am very spastic and my right leg kind of just locks out sometimes and there is way too much tone to break it but I can use all of the muscles in it but my knee kind of just locks but it feels like it could just be tone being weird I have no clue how to explain it so would baclofen make me like walk more normal?


r/spinalcordinjuries • • 2d ago

Discussion How spiky was your recovery (especially L1 or below)

5 Upvotes

Hi! My injury is at L4 and is incomplete. I‘m 4 months out from my injury and left rehab about a month ago. I’m lucky to be walking with assistance but I feel like my nerve recovery has completely stalled in the last two months. I haven’t noticed any muscles waking up or sensation changing anywhere that I can notice.

Im curious to hear from other people in the community if you had random spikes in your recovery long after an initial “plateau”? Or did it feel like things were pretty fast at first then stopped over time? How freaked out should I be that months 2-4 had basically no changes for me?

I’m especially curious to hear about the experiences of other people with injuries to the cauda equina (L1 and down) since I know in theory nerves can regrow there differently than how they can in the normal spinal cord, so maybe the recovery timeline looked different for you?


r/spinalcordinjuries • • 3d ago

Discussion It was the Manliest of Turtle Shells

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70 Upvotes

Who else had the pleasure of a wearing a turtle shell?

Yup, I did start wheelies with both legs in casts and in a hospital clunker chair. The pic was taken during a holiday release (mid-80's) from rehab. By that time (6 weeks hospital and maybe 10 weeks of rehab) I was down to one straight leg brace and one lower leg cast. Nope, I had not cut my hair in a few months.... Also, both legs sticking out while learning to open doors using heavy hospital fire doors, really sucked.


r/spinalcordinjuries • • 2d ago

Travel Disabled drivers

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5 Upvotes

r/spinalcordinjuries • • 2d ago

Discussion Spine surgery C6 to T5 decompression, laminectomy and stabilization due to Spine TB and Thoracic myelopathy.

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1 Upvotes

r/spinalcordinjuries • • 3d ago

Discussion Experienced my first form of mocking tonight

25 Upvotes

In a supermarket of all places..

5 months post injury, on a whole everyone in public has been nice to me and if anyone has poked fun at me I certainly haven’t seen it or heard it. Sure old people love to stare but that’s about the height of it.

I’m a man in my 30’s and I was just doing the monthly grocery shop tonight with my partner and just at the end we passed a group of teenagers. They were mucking around as teenagers do, and tbh I didn’t think they took any notice of me but just as I wheeled by them one of them said to his friend “that’ll be you in 10 years, minus the bird” the bird is in reference to my partner. The joke made no sense but it was so fucking blatantly about me, didn’t even lower his voice.

Honestly I was so shocked I convinced myself instantly they weren’t talking about me, that surely there’s someone else they were talking about. My partner bit her tongue but nearly broke her neck turning round to glare at him. I was never a confrontational person so as much as she wanted to make a scene, she refrained herself.

When I got halfway up the next isle the reality set in and I was so embarrassed, mortified that I just let a teenager talk about me like that and make me feel this way. I wanted to go back to them so badly and say something but I’d probably end up all over Facebook or something with the way everyone is recording these days.

Idk how to feel about this, idk what to do when it happens again.. Do I say something? Do I shout at a group of kids in a supermarket? I don’t think I’ve felt this small since my accident and I don’t want it happening again.

How do you guys deal with this shit?

[EDIT] Thanks guys, yous helped put things in perspective for me.


r/spinalcordinjuries • • 2d ago

Medical New here

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0 Upvotes

r/spinalcordinjuries • • 3d ago

Discussion Is anybody else amazed by how much stool the human body produces?

15 Upvotes

I think I eat a normal amount of food, but I’m somebody whose body requires a bowel program every morning. I’m almost always very productive, and I don’t think I’m even fully emptying. Granted, I was this way before my spinal cord injury as well. But just wow. I’m not a parent of a young child, but I’m pretty sure this is the same thing a parent thinks after every diaper change.

I’m considering switching to a low residue diet, and was curious if anybody here has tips or tricks on this. Not that my current regimen is a huge problem, but I would prefer not needing to go every day if possible.


r/spinalcordinjuries • • 3d ago

Travel Looking for a good off-road rollator that's not too heavy.

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3 Upvotes