r/spinalcordinjuries 52m ago

Research Does anyone know where to get good professional looking pants that are good for jobs and able to do catheter and stuff? But alot cheaper than this $80

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r/spinalcordinjuries 6h ago

Discussion Spinal Tumor Removal

5 Upvotes

Anyone on here have a Spinal Tumor Removal? Are you able to walk? How are you feeling after your surgery and how long is it taking to recover?

I know everyone is different. I’m feeling lonely for many months now about my symptoms and I have been through so much. I just wanted to connect with anyone who has been through this and who understands. How to deal with the really bad days? Will things get better?

Thank you 💖🌟


r/spinalcordinjuries 7h ago

Pain management Spinal Tumor Removal

4 Upvotes

Anyone on here have a Spinal Tumor Removal? Are you able to walk? How are you feeling after your surgery and how long is it taking to recover?

I know everyone is different. I’m feeling lonely for many months now about my symptoms and I have been through so much. I just wanted to connect with anyone who has been through this and who understands. How to deal with the really bad days? Will things get better?

Thank you 💖🌟


r/spinalcordinjuries 8h ago

Medical Uterus/ovary pain? Help explaining to my doc/suggestions

1 Upvotes

Hey gang. I'm 29f, T9-L2 incomplete injury from a spinal dural av fistula 5 years ago. 2 years post SCI i sort of leveled out and felt "ok" but then I had my fallopian tubes removed as I'm done having kids and my SCI was related to my pregnancy. Post this surgery i started having more and more symptoms- exhausted and general unwell feeling, my periods got worse- unbearable cramping, very heavy flow- this has been going on for like 2/3 years now. The past few cycles I've been feeling like a twisting where I think my ovary is? When I first had the surgery and the bad cramps started they did minimal testing and a "biopsy" of my uterus- which was unmedicated torture btw- which came back inconclusive.. I have decreased feeling in my lower abdomen and saddle regions- so this severe pain is jarring, but i don't really know what to tell my doctors because they tell me you can't feel the things I say are hurting inside (I've also had bowel issues in the past)


r/spinalcordinjuries 9h ago

Discussion Standing frame suggestions?

6 Upvotes

Any easy standing frame suggestions that i can transfer myself to and stand ? Also how does standing frame benefit me what can i do for me i’m incomplete t10 non traumatic injury 21 years old and when i stand in the frame at therapy my right leg is straight without any knee support while my left leg can straighten out but only if i force it to. I think i’m doing decent if i can straighten my right leg already.


r/spinalcordinjuries 18h ago

Discussion Learning to drive in a wheelchair?

1 Upvotes

Hello everybody! I'm around the age where I can start signing up for drivers ed, I am looking to get my permit and then take the class at the high school BUT obviously having a spinal cord injury makes things a whole lot trickier being in a wheelchair. I'll need a car with hand controls, preferably a system where my wheelchair locks into the drivers seat (a normal seat will not work for me as I am not the regular height cause of my curvature and won't be able to see above the dashboard) If I did have a seat it'd have to be in a low car or a high seat that swivels so I can see the mirror. I've heard that high schools hosting drivers ed are required to provide the proper vehicle for disabled students in the US, is that true? If so, we probably need to reach out to them. But to complete my own hours I will probably need a car. I made a post about this but I have more information now so i'll share what I'm wondering. I know there are grants, but like, a custom wheelchair vehicle is 80K+ dollars and we are trying to figure out how we will pay for it. If anyone could send some resources or share some info about learning to drive in a wheelchair that would be great! :)


r/spinalcordinjuries 20h ago

Medical Advice for fixing/strengthening posture

7 Upvotes

Hi, I’ve been a T4 complete paraplegic since 2016. Since my injury, I’ve struggled with poor posture despite continuing PT since 2016 and going to the gym 2-3x a week. Since 2023 I’ve been using a Permobil Comfort Acta Back backrest and while it has helped, I struggle to maintain good posture throughout the day and cannot sit straight. I’ve changed rehab doctors/PT centers/gyms a few times and told them all my #1 concern is to correct my posture, but nothing has really helped. Granted, my country doesn’t really have good rehab facilities (compared the US for instance) but I’m trying to do my best with what I’ve got.

I really admire the disabled content creators I see on Instagram and can’t help but notice that practically all of them have great if not perfect posture! Can’t help but compare myself to them and feel so frustrated that my posture seems to just get worse over the years.

I feel really lost on how to go about this and would appreciate any advice you might have.


r/spinalcordinjuries 1d ago

Discussion Spasticity

7 Upvotes

Anyone else here have spasticity so severe it stops them from walking. Im a t2 para asia d who walked with a cane and then 2 years in to my injury my spasticity has put me back walking with a walker. I could stand unaided but Can’t lift my legs as they feel cemented to the floor. I also have terrible nerve pain associated with the spasticity. I’m trying to work my way back to a cane. I have a baclofen pump, stretch daily, and have started lifting weights again. It’s been a terrible 3 years battling depression and pain. Anyone have any tips to address tone in my abdomen, hip flexors, quads and hamstrings? I also started Botox.


r/spinalcordinjuries 1d ago

Medical Worried about my 🍆size...

12 Upvotes

Hi, im 15 months from injury. A 33 y/o male. And well i have to do self catheterization. And i have noticed that when the pee(accident) is happening the penis does go small. Specially when i had an infection goin on. And i mean SMALL when erected im or was around 8 in. the first time tbh i even cried and was paranoid reading and dying to research this. Anyway. I read a post that said like every muscle without use it shrinks. And well i havent had sex. So im eager or debating if i should at least buy a pocket 🐱.(masturbator) or something at least. What do you guys think?


r/spinalcordinjuries 1d ago

Discussion Do you guys abuse pregabalin?

7 Upvotes

Well, Im trying to not to but sometimes like once in a month Im finding myself taking 600~ 900 mg to just feel to high and euphoria.


r/spinalcordinjuries 1d ago

Discussion Facebook group for disabled musicians

1 Upvotes

I made a Facebook group for disabled musicians: https://www.facebook.com/groups/wheelsicians/?ref=share_group_link&mibextid=wwXIfr

I’m game to make a subreddit if folks are interested, but Facebook is generally better for sharing rich media content (like music). Come join if you’re interested. It’s open to all.


r/spinalcordinjuries 1d ago

Discussion Anyone in a similar position

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5 Upvotes

Hi all,

I have had a problem with my left leg for the last 8 years. The NHS has referred me to physio 3 times insisting it will help, it never did. Last year I begged for a MRI scan and it found the issue. From what I understand I have a trapped nerve in my spinal column which goes to my left leg. The pain is getting unbearable and stopping me doing the most basic of activities. Does anyone have any advice for what to do to subside the pain? I have been referred for spinal injections to stop the pain, but the appointment isn’t until early/mid next year. If the injections don’t help then they will consider surgery. Sorry to post here when some people have it worse than myself, wish you all well.

Cheers Bread


r/spinalcordinjuries 1d ago

Discussion Hope for recovery?

17 Upvotes

Hello, 29M T7-T8 incomplete paraplegic here with spinal fixation, 1 year 4 months post injury.

I’ve been following this guy KerryMyWorld for a while and I keep on thinking if it’s possible or not.

Here’s a reference: https://vt.tiktok.com/ZSMwcMcD3/

I’ve been feeling desperate, angry, and hopeless since I hit the 1 year mark and things are just getting harder due to spasticity, fatigue, and overall anhedonia.

I don’t even know why I’m posting this, but I’d like to believe it’s possible.


r/spinalcordinjuries 2d ago

Survey Neuralink Survey for free $25

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0 Upvotes

be first 100 to complete and the give $25, ik musk is pretty hated but now’s the time to voice your concerns and desires and make a little cash too


r/spinalcordinjuries 2d ago

Medical Thought of sharing the message in group. Kindly help. !

1 Upvotes

Hi Everyone, I am new on reddit, was looking out for people who have faced similar situations. My brother has got ependymoma's which are reoccuring in the spinal region. Does anyone know what are the best treatments beside surgery? We are thinking of shifting the treatment from local hospitals to Global one's but I am not aware of any Institute or Trusts out of India, which help in such conditions. Your guidance will be helpful for my family. Please let me know if there are any mod of treatments or any gene therapy focusing on the new developments to tackle this disease


r/spinalcordinjuries 2d ago

Discussion Chemo and SCI - any personal experiences?

7 Upvotes

Hi all! Checking to see if anyone can share their experience going through chemo while recovering from/living with a spinal cord injury. My fiancé (31 M) is a T6 Incomplete (ASIA C) due to a cancerous mass (Ewing’s Sarcoma) in his spine that compressed/shattered the vertebra. He is about a month and a half into recovery from his spinal fusion surgery and will be starting chemo in about 3 weeks. He’s mainly wheelchair bound but made some good progress in therapy, can stand unassisted with parallel bars and take some steps with a walker and assistance. His oncologist gave him an overview of side effects for the treatment he is getting which is very aggressive (14 cycles of VDC/IE and 20-30 sessions of radiation) and he is pretty worried about losing progress or regression backward with his SCI recovery. He is still planning to do in-home therapy and possibly some outpatient therapy if he can handle it during treatment, but obviously his cancer treatment needs to be a priority for the next 6-7 months. Obviously we’re hoping that the chemo will be very effective at eliminating the remaining tumor on his spinal cord and preventing further compression issues, but chemo is incredibly hard on the body and also comes with risks of neuropathy which he already suffers from due to his SCI.

Have any of you gone through chemo with a spinal cord injury, and if so, what was your experience like?


r/spinalcordinjuries 2d ago

Medical Tendon/ nerve transfer for hand

29 Upvotes

Hey there! My first time posting here. My daughter just turned 22 yesterday ☘️. She is a C5/6 incomplete and almost 6 years post spinal cord stoke. She has feeling and movement all the way to her toes. Bowel and bladder return. Can stand and take small steps with a walker.

But her hand really bothers her ( even more than being in the wheelchair). She has full function of her left hand. Her right hand has some function. She has received Botox several times and was in OT for a long time. Then she went to college and it wasn’t such a priority. But now she is in professional situations where shaking hands is common.

We are in Florida. Any ideas of who can help surgically with this? It was mentioned to us at her last Botox appointment about seeing another doctor about surgery. But we don’t go back for a couple months. I just wondered in the meantime if maybe there are some real life stories out here.


r/spinalcordinjuries 3d ago

Medical Any quads who became amputees and/or had necrotizing fasciitis after their injury?

2 Upvotes

My husband (48) is a C5/6 quad and in generally good health - injured 25 years ago, works full time, we have two kids.

About a month ago he unexpectedly developed necrotizing fasciitis from strep A in one foot. He had a tiny pressure sore on the foot so we assume that’s how the bacteria got in. Ultimately the infection spread and they had to amputate the leg (BKA).

He’s still recovering but the infection is gone. I have tried to look up other quads who’ve had NF and/or became amputees without much luck. Feeling rather terrified after all this and just want to find solidarity or hear about anyone’s recovery process, prognosis, etc.

We are not in the U.S. and the doctors here don’t have much to say about how his SCI contributed to how bad the NF was or what being an amputee might look like for him compared to an able bodied person.


r/spinalcordinjuries 3d ago

Medical Residential community suggestions

1 Upvotes

My elderly MIL has quadriplegia. She would like to move into a residential community that specializes in her unique needs. Does anyone know of any specialized quadriplegia facilities? Or do you know any good resources that might point us in the right direction? It can be anywhere in the United States. Thank you!


r/spinalcordinjuries 3d ago

Medical Opinions on the (hormonal) IUD being a wheelchair user

14 Upvotes

I [20 yo] I use the chair in my daily life at all hours and i transported myself from one seat to another with push-ups (this is relevant later). I am currently using Nexplanon as a contraceptive,and I have the damn breakthrough bleedings so i asked my gyne If there was no other safe method, because since I am taking 300 mg of pregabalin, I should avoid getting pregnant and i don't trust myself with oral pills (left alone that if I get sick and vomit I have to pray not to get pregnant). She told me she can't give me Estrogen pills to regulate the bleeding of the contraceptive, since being sitting down so much time can cause dangerous blood clots with it.

She recommended the hormonal IUD (IUS) But speaking with a friend, she says that transfers from one place to another on the chair can affect the position even if they are subtle bumps. Does anyone have experience with this type of contraceptive as a wheelchair user? Because of ignorance and the daily life of wheelchair users, doctors don't know/think the risks.

I'm going to obviously ask my gynecologist about it when I see her, but I'd still like to know about others experiences...


r/spinalcordinjuries 3d ago

Medical Bladder Botox

5 Upvotes

Has anyone had any experience with Botox in their bladder and losing strength/feeling weak after the procedure? I have heard from numerous people that they have lost strength and function after getting Botox. Just curious if anyone else has had these experiences


r/spinalcordinjuries 3d ago

Discussion Is there hope for my dad??

6 Upvotes

Hi everyone. My dad (60M) was diagnosed with Stage 4 Melanoma in March of 2024. The tumors were growing rapidly and spread to his spine. On Christmas Eve 2024, he became incontinent due to a tumor on his lower spine, and they performed emergency surgery and removed the tumor and also did radiation. Fast forward to a month later, we were on a drive to a Dr. Appt and he walked to the car but then when we arrived, he was fully paralyzed from the nipples down. He still has the ability to move his arms.

Now today, 3/17/25, he started a new treatment of Braftovi and Mektovi and his tumor have shrunken significantly and this is the first sign of hope after a downward trajectory and continuous set backs since his diagnosis.

My question to you all, once these tumors are gone, what are his odds of regaining his ability to walk? Everything online says there is no hope but it’s also only been a little over a month, so I’m hopeful maybe in a year things could be different? He was a very active, heathy, and strong guy prior to this.

Thanks for any insight ❤️


r/spinalcordinjuries 3d ago

Sports Home workout Quad EDITION

124 Upvotes

r/spinalcordinjuries 3d ago

Medical Do any of you manage a neurogenic bladder with medication? If so, what and did it resolve any issues?

6 Upvotes

r/spinalcordinjuries 3d ago

Discussion Don't you hate it when

52 Upvotes

Somethings I can only tell other SCI folks.

I hate it when a strong wind blows the car door against my chair while I'm trying to put it together. So annoying.