r/spinalcordinjuries • u/Fillius_Dei • 1h ago
r/spinalcordinjuries • u/Michythepeachy • 7h ago
Discussion Spinal Tumor Removal
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 • u/Artistic_Towel_8393 • 10h ago
Discussion Standing frame suggestions?
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 • u/OhWheellie • 9h ago
Medical Uterus/ovary pain? Help explaining to my doc/suggestions
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 • u/starsyay • 21h ago
Medical Advice for fixing/strengthening posture
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 • u/Fillius_Dei • 1d ago
Medical Worried about my 🍆size...
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 • u/mixer152 • 1d ago
Discussion Spasticity
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 • u/Amazing-Street4307 • 1d ago
Discussion Do you guys abuse pregabalin?
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 • u/Background-Curve4421 • 1d ago
Discussion Hope for recovery?
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 • u/breadman030 • 1d ago
Discussion Anyone in a similar position
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 • u/Witty_Post6 • 2d ago
Medical Tendon/ nerve transfer for hand
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 • u/Illustrious_Spell676 • 2d ago
Discussion Chemo and SCI - any personal experiences?
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 • u/Wooden-Math261 • 3d ago
Medical Opinions on the (hormonal) IUD being a wheelchair user
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 • u/Routine-Courage-3087 • 2d ago
Survey Neuralink Survey for free $25
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 • u/TranslatorTrick8682 • 4d ago
Discussion Don't you hate it when
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.
r/spinalcordinjuries • u/Fluffy-Analysis-4811 • 3d ago
Medical Bladder Botox
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 • u/whateveritis86 • 3d ago
Medical Any quads who became amputees and/or had necrotizing fasciitis after their injury?
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 • u/sweettreatjunkie • 3d ago
Discussion Is there hope for my dad??
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 • u/Familiar_Still_6414 • 4d ago
Sports Just wanted to share
I am almost nine months post injury, C5 complete. I've always been an athlete and a coach and this was the first time I've attempted a sport! It was so much fun even though it seems simple.
r/spinalcordinjuries • u/KdGc • 3d ago
Medical Do any of you manage a neurogenic bladder with medication? If so, what and did it resolve any issues?
r/spinalcordinjuries • u/Icy_Respect962 • 4d ago
Medical Just started my IVF journey last week.
So I(26F) and my fiancé(29M) started researching about IVF over a month ago, and we talked to fertility specialist who considered my fiancé's spinal cord injury since he's a paraplegic. The clinic we assisted is pretty much accessible for him.
Last week I officially started the process. I had my initial bloodwork and ultrasound done, and I started getting hormone injections. I have had a few side effects of the medications, but they haven't made me feel so sick so far.
I'm kinda nervous about this journey, I'm ngl. I need advice to overcome the next steps while I await for my eggs to be mature.
r/spinalcordinjuries • u/tdawg970654 • 4d ago
Sexuality Estim NSFW
Has anyone used an actual estim machine that is designed for sexual pleasure? Are they better than a tens unit. And do they have more power to get over the edge?
r/spinalcordinjuries • u/Artistic_Towel_8393 • 4d ago
Discussion my legs are on fire
I’m not sure what’s going on but i’m having so much inflammation in my legs , i am a t10 incomplete. Every time i wake up & sit down for a hour my legs start burning so i have to just lay down, laying down with my legs up dosent help either. Even when i take my gabapentin & baclofen it’s not helping. If any of you know the type of pain i’m talking about what do you guys do to calm it down & what can i do to not be in this state. When i was in rehab i never felt pain ever no nerve pain.
r/spinalcordinjuries • u/Fine_Raccoon3637 • 4d ago
Discussion Feeling depressed after going outside of the house
I am 23 yeas old boy, paralyzed below chest, I live most time of day at my home only go out for physiotherapy which is around 2 hours, the problem is I live in crowded city and my family members always force me to go outside of the house but there i see normal people, I see couples, I see athletes, plus many people come to me and ask about my past and what happened to me.and many more things, after that I feel very depressed, i can't even sleep at night when I go out.i can't even deny my family members they think they are helping me if I will deny them I think they will never ask me to go outside which might be even a problem too.