Hello all! I am 27 male and a T6/7 incomplete SCI. I was born with a severe form of scoliosis that required a number of surgeries as a child. The last of which resulted in paralysis at the age of 14. I have struggled with independence, but have been able to make some serious progress. I finally learned to self-cath three years ago and started working as a teacher shortly after. Work has been stable and I am definitely a lot more independent than I was in the past.

My worry lies with what I have not been able to accomplish. I still cannot drive and rely on family to get me to and from work. I lived on my own for about a year and a half, but had to move back in with my parents. These set backs have me worried that I might be stuck in my current situation. I want so badly to be able to date, eventually get married, and start a family. I feel incredibly isolated when I am not at work. I see other people my age getting married and having kids. I don’t want to be stuck at home forever.

As I am approaching 30 I am afraid that my chances of finding someone are dwindling. I am so thankful for the progress I’ve made in my independence, and teaching has given me fulfillment, but I still have that void that I am trying to fill. Anyone else in a similar situation or have some success stories?

Hi guys, I was wondering if anyone had any advice for dealing with the cold or rain in a power chair. A little background about me: I’m a male, I have Cerebral Palsy, and I’m a full-time power wheelchair user with about 80-90% function in my left hand and about 20-30% function in my right hand.

I’ve lived in northern New Jersey all my life with my parents as caretakers. Where I used to live in Jersey, it’d average like 20-30 degrees with lows in the single digits and the occasional snow. Safe to say, I’m used to the cold. However, where I’m going to school in Indiana, it can get well into the negatives and snow for weeks on end, with winter starting in late October and lasting all the way through March.

Fortunately, it hasn’t really snowed or been super cold as of late, but next week it’s going to get down into the 20s and 30s, with it potentially getting into the teens.

My solution in the past has been to have my parents dress me in the appropriate clothing and then, depending on where we’re going, leave my jacket and stuff on if it’s somewhere quick or take it off if we’re there for a while. However, in college, my aides won’t be coming to classes with me, so if I dress warm, I have to keep those clothes on me until I head back to my dorm.

My issue with this is it gets hot in my classes, and I don’t want to be the only jackass in cold weather gear when everyone in my class takes theirs off. Luckily, the walk from my dorm to my classes takes about 30 seconds outside, as all my classes are in one building.

So far, I’ve just been wearing sweats and an undershirt and a sweatshirt, and this has been fine. However, I don’t want to be confined to just sweats, as they’re not always the most fashionable. Aside from my classes, I spend a lot of time at another campus that’s a 10-15 minute walk from my dorm, with buildings much more spread out than my very small campus where my dorm and classes are.

I’ve been looking at wheelchair cold weather gear like ponchos and things, and they don’t seem very fashionable, and they look like they’d make me stand out, which is a big no from me. Big jackets don’t seem to be the solution, as they’re clunky and ugly. I have a couple of wool sweaters and a puffer jacket along with a stadium jacket.

Also, on the pants front, I’ve semi-recently started using a condom catheter with a leg bag and just found out that none of my lined sweatpants work with the leg bag and cath. I’m looking to get the bag mounted on my chair, then cut a small hole in my pants so I can run the tube from the condom to behind my knee, then through said hole to the bag on my chair.

Any ideas as for things I can do?

Hi everyone, I'm a 27 Y.O male who just had cauda equina decompression surgery. I was going to post in the cauda equina syndrome sub, but it's pretty small, and inactive, so I hope I can post here. I'm just looking for some community. I've been dealing with progressive bladder issues, sexual dysfunction, leg weakness(ambulatory wheelchair user)and severe pain for about three years.I have been seeing Doctors the entire time, but it was only found when I changed hospitals/doctors. The other hospital kept acting like nothing was wrong, and ignoring me. When the new doctor looked at my MRI, he said I needed surgery urgently. Apparently I had an extruded disc pressing 10mm into my cauda equina. So now I've had the surgery and am recovering at home after an overnight stay. Follow up with surgeon is in two weeks. Just wanted to kind of share my story. If anyone has any tips on coping, recovery, or anything else, I'd like to hear them. Hope everyone is well!

Hello everyone. Writing this from a hospital bed in Houston Tx. Last Sunday(11/24) had a strong unusual middle upper back pain. Didn’t thought much about it, seemed to have gone away by bedtime. Woke up on Monday(11/25) with everything on my left under my bellybutton numbed front and back. Sensation was off, can seem to feel pain and can’t distinguish between hot and cold( feels like pins and needles). I do have full strength and i’m able to walk, and didn’t loose any bodily function.

Came to the hospital, and after an MRI. It was decided that I should get admitted to the Memorial Hermann stroke unit. This is the interpretation of the MRI: Small focal area of diffusion restriction along the right anterolateral aspect of the thoracic spinal cord at the T8 level with associated T2W hyperintensity, concerning for small focal area of acute spinal cord ischemia/infarct.

Then I heard the words that have been haunting me for the last week….potential spinal stroke. I’ve had an endless testing done on me. Blood work, spine CT with and wo contrast, spine MRI with contrast(confirming the first MRI diagnosis) , brain MRI and a number of heart studies, and still nothing else has been abnormal.

Monday I’m having spinal tap to get spinal fluid for testing….and I’m freaking out. I’ve had so many panic attacks in the last 3-5 days I’m emotionally exhausted. Fear is consuming me, Drs are in still looking for alternatives as this seems to be super rare…alternatives of things that can mimic a spinal stroke are really horrible which has me even more panicked. Just looking to reach out to anyone that has gone or is going through this…as these have been the most difficult days of my life.

I am incomplete c5 due to spinal stroke. While I am almost normal except shoulder and biceps functioning but I still sad about my situation cause freedom in the movement was almost like a sense of living to me. So knowing that there is a hope is already a very good thing. By only reading about new technologies like arc-ex, nvg-291 and opc1 gives a big psychological relief. What are your estimates on how long we have to wait? What are other treatments are in research you know ?

Insurance won’t pay so will be out of pocket.

How long does it take to set up (ie putting all the pads on and getting going)?

How often do you ride?

I'm T1 ASIA D and about six years since spinal surgery stopped my cord from getting damaged and 8 years since I first figured out I had a problem. Also have hip arthritis which I had surgery to mitigate in 2023. Long story overall, but functionally I'm the best I've been in years and haven't used my cane, AFOs, wheelchair, etc in months.

I've been at this point at least twice before though where I can walk/stand for 20-ish minutes at a time but when I go longer than that I end up in debilitating pain that I can't sleep through at night which means I can't recover. Right now I can do about 3500-4000 steps a day and make it through the pain but fit instance I did 5100 yesterday and was up for five hours in the middle of the night with my pain at a seven. The soreness in my legs just becomes burning nerve pain and I've been deconditioned for years. I fall asleep well but then wake up a few hours later with way too much pain to sleep through.

In very happy and lucky with the progress I've made but if I could be on my feet for an hour or two at a time it would be so life changing.

I'm hoping that others have some ideas I could try to cope with the pain at night so I can keep working in my legs and still get enough sleep to recover. Obviously going slow is a part of it but I'm going to go overboard sometimes.

Here's what I currently do to manage pain :

• hot jacuzzi bath every night
• 5mg THC, 30mg CBN, 30mg CBD (gummy, tincture, and capsule)
• wear compression pants and socks all night (helps dull the nerve pain and more blood flow)
• regular 5min stretching routine morning and night
• massage gun on my legs when I wake up in pain (sometimes helps me fall back asleep)

Things in thinking of trying :

• double the THC when I know I'm sore. I don't like getting that high but maybe I'll stay in a deeper sleep. Or I guess I could take it in the middle of the night if I use a tincture
• stretch for longer at night
• use Voltaren cream on my legs after my bath
• use icyhot again (didn't seem to help a ton)
• use lidocaine patches on the worst areas (not sure it has helped that much in the past)
• start pregabalin (took gabapentin for a long time but it really wasn't that helpful, THC had been way better)

I don't love any of those options. Any other ideas I should consider? Thanks for reading and any thoughts you have.

Permanent Wheelchair Users; how is the accessibility of the area in which you live? If you’re comfortable, where is that?

Context; T5 complete for 3 years and very limited experience using my wheelchair. I am living alone in the Bay Area for the last 15 and need to move because I can no longer afford it but have no idea where to go!! I have always lived “off the beaten path” but find myself being forced to “live on the beaten path”. Beyond being wheelchair bound, I have zero limitations on where to go next. I just have no idea where that should be!! I am fully independent para and live alone.

So tell me, what’s it like where you live?

I see the 1st generation Tesla bot is coming in ‘26 I haven’t done my homework because I’m sure I probably can’t afford one but I’m curious how much would they be able to help the sci community & what are you looking forward to it helping you with?? I’m sure someone has done they’re due diligence on it and I just wanted to start some dialogue and get some discussion going

My wife has SCI at L2 due to Gun shot wound(incident happened like 40 days back). So recently she got UTI and she's able to pass urine (from last 4 days) atleast 50% when she has above 600ml in bladder. From long back (20 days back) she's able to know like her bladder is full or not. Recently she got UTI admitted in hospital now she's not able to know like her bladder is full or not? She's trying harder to push urine out. Is their any reason why or the ability she got is only because of UTI? Will that ability go back as infection is cured? She's on periods or its because of periods she's not able to know?

How did you guys get to where you are? I’ve read so many comments/ posts where most people with SCI can walk! Even with devices. I would love to just be able to even walk a bit or anything. Since so many people are up walking, then does that give me a chance to walk? Anyways, what did you guys feel in your legs before you regained movement ? How long did it take? Did you guys take additional supplements ? Have a really positive mindset? I’d love to hear it. I’m T10 incomplete 22 years old, only 5 months in. I’m hoping youth is on my side and I’ll be able to walk again even if it’s a short distance that way I can work my way up to walking longer.

Hey everyone,

I'm hoping to connect with someone who has been through a similar situation or has insight into what l've been experiencing.

A couple of weeks ago, I had an ACDF surgery at C5-C6 to address compression on my spinal cord and myelomalacia in that area. Before the surgery, I was dealing with severe numbness in my left leg, which wasn't pain but complete numbness, along with constant, painful pins and needles in my hands. The surgery was supposed to stop the progression of symptoms, but unfortunately, I haven't noticed much improvement since then. In fact, the numbness has spread further, now affecting the entire left side of my body, including my leg, torso, and private areas.

This has been incredibly challenging because the numbness doesn't just affect how I feel physically-it's also interfering with my daily life. Emotionally, it's been tough not knowing if this loss of sensation is permanent or if the nerves just need more time to heal.

I've seen multiple neurosurgeons, pain management specialists, and neurologists, but so far, I haven't gotten much help or clarity about what's going on or what to expect.

Here's what l've been doing to help with recovery:  *Physical therapy and gentle exercises to stay active.  *Looking into supplements like vitamin B12 and magnesium to support nerve healing. *Gabapentin (non of it has worked)

I'm posting here because I want to know: • Has anyone else experienced something similar?

• If so, did the numbness improve over time, or did you find anything that helped?

This whole experience has been frustrating, and I feel stuck without a clear timeline or understanding of what's next. If anyone has advice or personal experiences, it would mean the world.

Thanks in advance for taking the time to read and responding.

Hi all! Recent T11 complete here (24 M). First post on this thread, however I’ve been using it to answer a bunch of my questions and it has been incredibly helpful. Wondering if anyone has been using the Navina TAI system and has run into a similar issue. I can insert the catheter fine, however sometimes (usually around halfway-through pumping the water) the entire catheter will fall out. And by fall out, I mean violently shoot out of me balloon still inflated and all. I pump the balloon the recommended 3-5 pumps. I vary the water amount depending on how I feel intestinally on a given day. I have followed the directions to the tee. But every once in a while the entire catheter will shoot out of me into the toilet. I don’t have feeling down there, but when this happens I can tell you I feel something. This also tends to cause leakage that doesn’t occur at all when the program runs smoothly. This system is perfect for me. It’s easy, it works, it’s portable, and most importantly I have not had an Invol since beginning it. (Roughly 2 months now) It’s just this one problem that I can’t seem to figure out. I guess what I am asking is if anyone using this system has ran into any of these issues, and if so what did you do to alleviate it?

Thanks in advance, from a guy just trying to prevent anal prolapsing and or hemorrhoids at an early age.

Which are your favorites? I use both, so I’m looking for recommendations.

I have also been researching an attachment for my manual chair to make it electric. Something like a Batec, or Firefly. If anyone has any suggestions, I’d love to hear them!

For my walkers I am currently four months in my injury C5 to C7 incomplete main reason spinal cord was compressed, but I had surgery done in a couple hours decompression surgery to get that fixed. My question is how do I improve my chances of walking? I haven’t started PT yet and I get stem cells injections next month. does your leg controll just come back if not, how can I try to walk?

🍂 Happy Thanksgiving, Everyone! 🍂🦃

Today, I’m counting my blessings and feeling grateful for all the love, friendship, and support in my life. Thanksgiving is a time to reflect on what truly matters, and I’m so thankful for the incredible people who make my days brighter.

Whether you’re surrounded by family, friends, or enjoying a peaceful moment to yourself, I hope your day is filled with joy, laughter, and plenty of delicious food! 🥧🍗

Wishing you and yours a beautiful Thanksgiving full of love and gratitude. 🧡

What are you thankful for this year? Let me know in the comments!

Hi everyone, I have been lurking at this sub for a few weeks, I have been in Reddit for a very long time. This is a new situation for me.

I (42 yo male) had an aneurysm at the end of May this year. My wife Rushed me to the hospital and they moved me from the ER into surgery almost immediately but just to stabilize me i think. My blood pressure was high and they couldn't operate like that. it took a few dats to have me ready for surgery and I think part of the surgery requires to cut the blood flow on my spine. Surgery was successful but I did not come back from anesthesia for a while, I think I was deeply sleeping for about two weeks and the prognosis wasn’t good. My doctor has a record of not leaving a patient paraplegic for good during this surgery, but the fact that I was not coming back was starting to scare them.

Anyway finally I woke up, I had several things going on including two strokes post surgery that required more surgery I think, I honestly do not even know everything that happened.

I was in the hospital until the end of June, no movement from my waist down. Went to inpatient rehab until the end of July, by that time my body started moving, from waist down to knees, not a lot but a bit. I went home on August, unfortunately I was in life support for longer than the recommended time and I developed tracheal stenosis which means I couldn’t breath, after 3 visits to the ER and 3 surgeries I ended up with a tracheotomy, among the other things I had during my stay on the hospital was a sacrum wound because they couldn’t move me much for some time. So back to my SCI, I have had OT, PT and nurses to look after my wound since August when I came home. OT only comes once a week because my motos function is as it was before the surgery, PT comes twice a week. They are happy with my improvement and are positive recovery will be successful, I regained a lot of movement on my legs, my toes still don’t move but my feet do, one better than the other one. I can transfer from the bed to the chair either way a transfer board by myself and I recently install some vertical grab bars in my living room and I started standing but, my knees still cannot go straight, they stay on an angle. I hope to gain most of my mobility as the time passes. I have those nerve pains on my feet and they are annoying, however I don’t take any meds for that, Tylenol now and then, specially after I read here the side effects of many of those meds. You guys are true warriors, this life is not easy. you need a very good support to get by. I am definitely thankful for my wife, kids, family on both sides that have helped as much as they can. to be honest at this point the thing i hate the most is the whole trach tube thing. it is very difficult. I just wanted to introduce myself because i may be a regular asking questions and participating. This seems to be a great community.

Building a home gym trying to get more buff I got a cable machine and some dumbbells looking to get a ski machine for cardio any other suggestions I should get ?

just felt like coming here to vent, my nerve pain is actually unbearable. i really don’t wanna rely on medicine but i’ve had to go back to gabapentin because this shit is not even letting me sleep.

is taking insane doses of medicine the only thing that makes this manageable? and even “manageable” is stretching it. i just think it’s so frustrating how one of the main things affecting the life quality in SCI patients is barely being researched, it’s always about the chair. i couldn’t care less about walking at this point 10 years post injury, let me just live without pain.

besides medicine, cannabis and/or mushrooms, as i’ve read some people here use for that, is there really any other option? or does this just gets progressively worse as you age with SCI?

I have used viagra and Trimix for erections in the past and both work. However, the Viagra leaves me with a terrible headache. (Trimix has its own problems - I dislike doing the injection during sexy time.) So this has made me get a script for Cialis. It’s waiting at the pharmacy for me to pick up. I’m a little hesitant to even try it though because the active mechanism looks to be similar to Viagra. Has anyone had success with Cialis no giving headaches when Viagra would give you one? Many thanks!

Is it possible to regain trunk control (context) I’m 4 months in my accident I’m currently in a hospital with shitty pt but before I could not sit edge of bed and now I can a little bit what I’m asking is will it improve once I go to a physical therapy place. C6-7 compressed sci

Has anyone tried gabapentin and found it make the feet feel like they’re burning? Started about a week and half ago. Was on it over a year ago and I don’t remember this .

So today in PT we tried E-stim to see if there’s any muscle contractions. Left leg starting out there was nothing in the quad or hamstring, but the right leg I saw muscles twitch that I have seen move since before my injury 3.5 months ago. Therapist didn’t seem to excited with it but I’ve been told there’s a 1% chance I’d ever walk again and today this gave me something to hope for. Even if it’s only standing with assistance it’s something but I’m not sure what it could mean. Not interested in talking to doctors since every time I get excited about a new feeling they come along and shoot it down. Just hoping for similar experiences and a better understanding of what to expect.

Hey! T2 incomplete Asia d. I have wrote my Story a bunch of times on here. I have gone from walking with a can to starting to use a wheelchair. This is due to my spasticity and high muscle tone in my hamstrings, quads, adductors, and lower back.

My question is regarding wheelchairs and trying to find one I can take a part. I have seen in videos where people take chairs a part and put them in the front seat area. I also want something lightweight so I can transport it myself. If someone could provide me with some leads I would appreciate it. A local wheelchair company told me wheelchairs likes that do not exist. 🤷🏻‍♂️

Hi there fellow injured peeps- I want to hear what health tracking apps you use/recommend. I use my apple watch but would like to have some kind of way to monitor my body’s energy levels based on my activity beyond the normal bpm stuff -just wanting to find out which apps have worked best for other wheelchair users so far?

How long does physical therapy last in patient or out patient

My sister and I are looking for a smart device that can be hang in my dads room to help him stay on top of his meds, appts, things to do, and potentially remind my dad of something he can do that day. He’s an 83 yr old quad with an at home nurse. My mom is 78, lives with him, and is very worn down staying on top of the schedule. Nurses help obviously, but we need to help with structure. I go by the house as often as possible as I live near by, but my sister is about 700 miles away. Ideally we would be able to monitor and add/delete from the calendar as we oversee his care (to take it off my mom’s plate). I’m comfortable coding with APIs and what not but I am not familiar with what hands free devices are commonly used community to assist the disabled. Any suggests would be greatly appreciated.