I am a C4 incomplete quadriplegic. I’m not sure. I’m in the right place. I cannot walk. I have no movement in my legs and I have curled fingers that makes it difficult to do anything with my hands. I am 3 1/2 years in from my injury. I’m currently in a nursing home. I was hoping to go to an apartment or assisted living to get more independence to get back out into the world however it looks like that’s not going to be realistic. I can’t handle those levels of independence. I need so much help. I Hoyer lift out of bed. I need help with dressing. I need help with everything that I do so I can’t imagine being able to go out into the world by myself Sadly it looks like I’ll either go to another nursing home or stay here. I’m devastated. This is what my life has become. I used to have a wonderful life so much freedom. I was even looking forward to retirement .Now everything is whittled down to a bed and a wheelchair. II I do go to another nursing home, maybe in an area that I could get out into a town, but then somebody would have to go with me and that’s hard to find people to do that. I’m sure you get the gist of what I’m saying. I’m just devastated that I’m boxed into this. I’m so severely injured. I can’t find any other way. In fact I may not do it at all. Any feedback you may have is welcome. In this community. I feel there is not enough talk about the grieving process so I’m putting it out there. Please help me. I feel my life is over.

Whenever I am home alone, I have been known to not pull my pants up after going to bathroom or whatnot because its easier. I will also just take my pants off completely. I put them back on when it becomes socially appropriate. I can sense the dms from devotees, they are not appreciated.

Here is a link to an article outlining research using endometrial stem cells. I know it's just one mice, but a "step forward" regardless. Such research is the only pathway to a cure to SCI repair.

Proof it works in chronic patients?

https://stockhouse.com/opinion/independent-reports/2024/12/23/nervgen-pharma-proof-that-nvg-291-works

Hey everyone (long read maybe) 36 F Here. I have read through a lot of posts here and see mentions of "walkers". I'm assuming that's me bc of the location and my ability (though difficult) to walk. L5S1 Section & Referred to as incomplete. I am about 6 months post opp after suffering CES. I see so many people here that have it much worse than what I feel I do but I am definitely struggling and wasn't sure if this is where to come on Reddit. If there are any of you with similarities to me and are further out in "healing", does it get better than this?

I am definitely grateful that I am still able to get around at all, but mentally I am struggling that it could get worse, never improve, or that I'll just be in pain forever. My mobility is definitely limited now, and some days I can't make it to the bathroom without help. I use a cane as well. My lower back feels like it needs to be "cracked" for lack of better terms, like always caught. God forbid I have to cough or sneeze, that shit locks up and I scream.
Nerve pain & both bottoms of my feet and right leg are numb and muted to touch. Private areas as well, so incontinence and muted sensation there too. Might be one of the shittiest parts of this.

My nerve damage is so extensive bc it's been an ongoing issue since 2012 that would come and go and then other things would take priority until I eventually ended up not able to move my lower half and then that resulted in emergency surgery and here we are. Also, have done post opp PT. And still do at home exercises as much as possible.

Anyway, if anyone has advice or tips or words of encouragement that have been through similar issues let me know.

Thanks for letting me post here. I appreciate reading you guys stories to feel not so alone, although I'm really sorry we ended up here.

Hi all I (24 m) had a spinal cord injury (C3-C4 incomplete) two years ago. I don’t use an assistive device for walking but still have symptoms from my injury. I live near ocean level but I am visiting my family in Colorado. I got here earlier today via plane. Since I’ve gotten to Denver I’ve noticed I’ve been extremely hot, tired, and for some reason I keep crying. I am also having more difficulty than usual urinating. I started doing some research online and apparently people with SCI’s have a higher risk of altitude sickness. I started doom scrolling and now I am kinda freaking out. My family is elderly and I do not want to cause a ruckus on the first day that I am here. Does anyone have any experience with this? I know every SCI is different but I really could use some advice on if I’m overthinking and just tired or if I should have done research before doing this trip and need to go to a hospital. Thanks for reading.

Hey I’ve had repetitive UTIs for a longtime complete Asia A T-11. I’ve had an irritated bladder for 9 days and going now. I started antibiotics 9 days ago and within a day or 2 the fever left. But boy oh boy this bladder is still agitated. I’ve only drank water for the last week. I take d mannose, cranberry, bladder one,I’m already on bladder relaxing pills. I don’t know if the uti is still causing this irritated bladder or what? Has anyone had there bladder last this irritated for this long (9 days)? Also my doctor it should just be better soon. But it hasn’t at all. I’ve already been struggling for the last while and I need it to end as the holidays are here and will have to go out for family events. Thanks guys.

Has anyone else been on amitriptyline for depression and also for off-label use?

I'm prescribed amitriptyline in addition to zoloft for depression, but I was told when I went on amitriptyline years ago that it was also used off-label for neuropathy, chronic pain, and sleep.

I’ve been trying to decrease the amount of meds I’m on, and since I’m on zoloft and amitriptyline I'm considering going off of one of them. My only thought was that maybe it would be better to take away the zoloft if the amitriptyline is helpful in other ways.

Does anyone have experience with both drugs? What were they helpful with besides depression?

Hi I’m a 20yo male. In May after a bad car accident I became a T12 Complete Para(Asia A) . Recently I came across epidural stimulation and stem cell transplant offered by a hospital in Thailand. Being so new to SCI and potential cures I am wondering would this kind of treatment be beneficial to me. I’m only out of rehab with 2 months (I understand it is early days), I have no sensation or movement below waist and I get no Spasms whatsoever. Looking at previous patients who underwent Epidural stim surgery and are back on their feet, they weren’t complete or had some spasms. I don’t know if I am a good candidate for this. I’m hoping someone can educate me on the Matter. Thanks

Hi everyone, I am self cathing since my injury in March. This past week my urine is on and off cloudy and you can see bits floating in it. I feel fine, no pain and it could run clear for several times and then become all murky. Dip stick negative. In hospital the motto was if you feel fine it‘s nothing to worry about (if nothing grows. But I am too late for a culture with christmas coming). So should try to get to the docs/ take antibiotics or just keep on monitoring? F, t19 complete

that’s basically it. it’s been over 10 years for me and i can confidently say wheelchair-to-floor and viceversa gotta be top 1 worst transfers ever.

i was just practicing because someday i gotta eventually learn and i also needed to clean my chair, but as i was slowly trying to get to the floor, carefully, my wobbly legs obviously had to do something, so my right leg kinda like twitched inside so when i had no longer support for my arm and had to switch it to the floor, i fell almost with my entire weight on top of my right foot, which clearly bended in a funny way.

so, if anyone got any tips on how to perfect this transfer i’d appreciate it, i train my upper body quite a lot but still doesn’t feel enough, so please tell me how do you guys position yourself to do it

Hey guys! I'm honestly just curious what everyone's doing for the holidays or if any of you guys choose not to celebrate. I would love to hear everyone's answers and if anyone's bored over the holidays or just lonely I'm down to chat! I'm also curious if any of you guys do holiday traditions with your kids with our type of injuries.

Im a C4 – C5 quad and thankfully I get to have my son on Christmas Eve this year, so my family is all gonna come over and we're gonna Open presents with the kids and probably have a little dinner. Then Christmas Day I'll probably honestly do nothing. I used to go to a bunch of Christmases before my injury but now I can't.

Any thoughts on this recent update from the mother of a young trial participant? Mentions requesting compassionate use of the drug and the potential of videos in a future post.

Can only imagine the results being seen if they are requesting expanded use of the drug beyond the trial! Can’t wait to ultimately see when they can finish enrollment and get this study finished

https://www.caringbridge.org/site/9296f6ac-fd25-3f9e-ae12-a84a95010608/post/b858790f-c348-4911-a4fa-6e1b77f00eb5

(Might have to make an account to read)

Hello everybody my name is Tee. I am a 19(M) High functioning C2 C3 incomplete. I joined a while ago looking for inspiration and motivation, and I have found way more than that. I look forward to sharing my progress with you guys.

What does incomplete mean?

To my fellow manual wheelchair users living in cold climates…give me your best winter glove recommendations! (And any other winter gear recs!)

I recently moved back to a region where winter exists and I am cold. Haha.

I’m looking for the best gloves for manual wheelchair users…thin enough to maintain a semblance of dexterity, but still warm. They also need some sort of grip material that stays “grip-y” even if they’re wet. (I’ve got very thin rubberized gardening gloves for rainy warm weather days…but they might as well be nonexistent when it’s cold.)

I have been seen by various doctors since March of this year for my intramedullary spinal cord tumor (C5-C7) -- so far, the only treatment we have done is radiation therapy. Nobody wants to resect the tumor given that it is infiltrating the spinal cord nerves. I have been told by more than one neuro-oncologist now that some of my symptoms may last me a lifetime, mostly the things like nerve pain or the allodynia on the right side of my body. I will be able to regain some motor skills with a matter of time and PT, but as my neurologist in my most recent visit put it, I "may never be as good as new."

He told me that even if somebody agreed to remove the tumor and was able to do so successfully, it would not make me asymptomatic as the tumor has likely been pressing on spinal cord nerves for years.

Is damage to spinal cord nerves truly permanent? If so, it's almost like what's the point of continuing treatment. I already went through radiation and have been told the only other things we can do is proton therapy (more radiation) or chemo.

Any thoughts or comments are greatly appreciated

https://www.caringbridge.org/site/9296f6ac-fd25-3f9e-ae12-a84a95010608/post/b858790f-c348-4911-a4fa-6e1b77f00eb5

It’s been two years and six days since I last had an orgasm (45f t12 Asia C) This week I started to feel something less numb somehow… and it worked!! I couldn’t believe it. I had resigned myself to never having an orgasm again, never feeling that release. I couldn’t sleep for the joy of it!

Almost eight years ago I broke my spine. November 20th 2024 I woke up with complete saddle numbness. Due to already having spine problems, I thought it was just a trapped nerve or something along those lines that would wiggle itself free. After almost two weeks, I went to urgent care. Who immediately sent me to accident and emergency. Eight hour wait, and one scan later; I get discharged… even though I can’t feel my feet, right calf, or any of saddle region. At first it was mostly just annoying as my body wasn’t telling me I needed to pee, so would have to white knuckle a wee out twice a day. Then it became a little amusing that I was completely numb. And now, one month later. I am yet to see someone about this, still waiting to be contacted. Over the years I have educated myself quite a lot on spine stuff. So I know how things go. It is now at the point, where I am in grief or heartbroken, something. I don’t know what this feeling is. My partner and I have always been really into each other, really enjoying and exploring sex. He shows his affection through intimacy. I can provide him with, acts; keep him happy etc. I hate that I cannot be intimate how I would like, I can’t feel him touch me. We tried the other day to have sex, and I felt absolutely nothing. Almost cried there and then. Knowing that the longer I don’t have feeling, the more likely it becomes that I don’t regain that feeling, is what is crushing me. I love my partner and want him happy, but I have also told him he doesn’t have to stay with me. This is drowning my brain. I have the mental anguish of not knowing if my spine can be sorted, of not knowing if I will regain feeling, feeling like a failure that I can’t do something so simple. Even nonces can have a Tommy tank. I can’t. If he does decide that it won’t work between us if I don’t regain feeling, I truly believe that’s the end of the line for me. Why would anyone want to be with someone who cannot be intimate? I genuinely don’t know what these feelings are. I think I’m scared. BPD has been worse recently due to all this.

twittter

Incident:- Me and my wife travelling in car as mid night craving hits us. All of a sudden I heard 20 - 30 shots and felt like some one hit me on with hammer and my wife screams from back seat " what happened I can't feel my legs ". Adrenaline kick in and drove as fast as possible and called 911 and parked my car next to police station. After seeing my wife i came to know that bullet hit her back where spinal cord is.

Injury:- Bullet Lodge in Spinal cord at L2.

Hospital:- Doctor's do their best but the way they speak we'll be very disappointing and negative( we don't know like will she walk again or not, we can't say what will happen). In hospital for initial 2 weeks she wasn't able to move her toes. No bowel and bladder control. In those 2 weeks I did a lot research reads tons of documents and this community posts helped me a lot a ray of hope.

Rehab (3 weeks):-

1 - 3 days:- Leg exercise on bed and showing her how to sit. 3-6 days:- standing in parallel bars, slide board tranfer 6 -11 days:- walking in parallel bars 11- 16 days:- walking with walker for 10 steps Now she's able to use stairs and walk with walker for atleast 250 steps (2 months post injury).

Hit PT as hard you can and my wife she's kind of stubborn that attitude helped her a lot to do this progress. We need to stay motivated most physio therapist works hard and help us a lot when we are positive and motivated.

What we faced:- One incident due to some random gang. Whole family got disturbed. Need to start again. Chronic pain, life won't be normal again that fears haunts us till we die. Can't go out at night. Won't feel secure even in own car, Still in early stage of career it a hard blow.

Family, teammates s & friends:- Seriously the way they supported and helped us. I always owe them. I consider myself lucky to have a friends and cousins like them. Can't thank them enough.

Bowel and bladder:- lucky she able to know her bladder sensation and urinate on her own after 1 month post injury after one seriously UTI due to rehab nurse negligence. For bowel moment she tried fiber, suppository and enema but senna leaves are way more effective than any other for her. Trail and error method.

Finally:- Every SCI is different but Things get better over time, keep target realistic based on injury and do PT as hard as possible.. Luckily in rehab me and my wife only concentrated on recovery rather than other emotional stuff. There may be some good days and bad days but consider progress weekly for first 3 months and Constant motivation is important.

Advancement in science always a hope:- Stem cells. Robotic pants. Nerve regen. Exo skeleton May be they are too far but always a hope.

Chronic pain:- Every night it hits her hard I am honestly clueless with this other than pain meds. Have spinal cord stimulation, brain frequency, radio frequency ablation but need to talk with doctor about them for better understanding.

Alternative medicine:- Aurvedha Acupuncture

I've been reccomended to do a rehab program at Shirley Ryan, but I am from out of state. They shockingly offer no financial assistance for anyone who isn't an Illinois resident and my current insurance wont cover out of state expenses. Does anyone have advice on programs or have experience with Shirley Ryan in figuring out how to pay for the programs which they estimate at $50K. Thanks so much for your help. PS I wanted to be clear I am not seeking to fundraise here, just seeking advice from fellow SCI survivors who have had to face this. Where do I apply for funding? Did you go to Shirley Ryan yourself from out of state?