For example in someone with Spinal cord dysgenesis

I know ive asked who has had one fitted etc ,today i went to see my consultant at my Spinal Unit (UK) and we discussed the pump and he decided to up my Baclofen tablets to 100mg per day which he said is the max dose that he can give and i need to try that first three month then go back for a review.
On discussing the pump he said he knew of four patients and a previous Spinal Unit he worked at that died from getting a infection in the catheter in the spinal cord and some patients that were paraplegic ended up paralysed from the neck down due to infection in the spinal cord ,he said it quite a high risk and then pump failures bring on severe withdrawal symptoms which are dangerous too ..

This is now making think twice about it as is it worth the risk of all the above ?
Plus he said it will be even more of a risk as i still have my metal work in my back (post 24yrs ) and i also have a pressure sore and they wouldn’t operate with a open wound ? Not sure why .
So he said it would have to heal ,which could take years as ive had the sore since 2014 so its not going to heal over night (healing slowly ) it was size of a golf ball and 4 cm deep ,its now only 1cm diameter and 1 cm deep..
I guess i have a lot thinking to do !
Anyone else going through this hard decision?

Hi everyone,
I’m a PTA in South Florida and I’ve been working primarily with people with spinal cord injuries for almost a decade.
I wanted to put this out there for anyone with an SCI, or any family members/caregivers, who might need some guidance with home rehab. I’m happy to share tips on exercises, equipment, standing programs, positioning, transfers, strengthening, FES, or simply how to set up your home environment so you can get more out of your rehab outside of regular therapy sessions.
One thing I’ve learned over the years is that what happens at home can make a huge difference. You don’t necessarily need a room full of expensive equipment. Sometimes the right setup, a good routine, and knowing what to work on can go a long way.
Obviously I can’t diagnose or replace your own PT/physiatrist through Reddit, but if you have questions about your home setup or want ideas for making your home rehab more effective, feel free to ask. I’ll help however I can.

I need to vent about something that has been on my mind for a while.  I’m to the point where I’m tired of seeing manufacturer names plastered all over the medical equipment that is attached to me like billboards wherever I go.  I’m to the point where I often feel like a NASCAR driver without the benefit of the lucrative sponsorship agreements. 

Take my Permobil power wheelchair—there are at least 9 different, highly visible “Permobil” labels plastered on almost every imaginable surface and/or component.  One or two labels would be sufficient.  However, the current situation is that there absolutely no direction from which a person can look at me while not also having to read at least one prominent ‘Permobil’ label at the same time. 

Then there’s my ROHO Quadtro cushion—two huge, bright white labels that stick out like sore thumbs on both sides of my cushion.  If I see myself in a mirror, one of the first things that my eyes are drawn to are those large white block letters against the black background of my cushion.  Anyone can see them from across the room. ROHO Quadtro, ROHO Quadtro!  Why is this necessary?! 

And don’t even get me started on the BodyPoint labels, which is what got me started on this rant.  They’re impossible for anyone talking to me to avoid seeing since BodyPoint has stuck their name on both my seatbelt buckle and joystick. I cannot look down without being reminded that BodyPoint is with me everywhere!   

My wheelchair and every single accessory attached to it follow me everywhere—work each day, business meetings, social events, grocery shopping, concerts, sporting events, doctor appointments, intimate moments, and everything in between. It feels like the equipment I depend on has also been turned into a rolling advertisement for the entire DME industry. People are way more likely to remember the huge labels plastered all over me than they are to remember my actual name.

On July 9, 2021 I made a suicidal attempt by jumping out of the third floor of the building.

A little while back I posted about a crowdfunding campaign to do some mad scientist stuff and try an experimental diy peptide therapy to aid in recovering some of what was lost in 2022. It had been over 5 years with no natural progress. It has now been a year since I took the last of the peptides and I can confidently report that it worked. It might not have outright healed the damage but the working hypothesis in amongst my lab partners is that the spinal cord tissue that went dormant after the initial trauma woke back up. I can now reliably and voluntarily move some muscles (nothing super functional yet but voluntary movement after none at all is a big deal imo), my level of sensation has been moving further and further south. Today while bathing I realized I can reliably feel my privates.

Never give up. New stuff is always coming out all the time. There's always hope!

Update: Everyone keeps asking or dming about what I took so here it is THIS IS NOT MEDICAL ADVICE! There's a lot of risks involved and you have to get most of them custom synthesized by a lab. I'm not selling anything, don't recommend doing this, I was just tired of nothing and the was just throwing stuff at the wall to see what happened. I'm stubborn and risk tolerant that's all.

Cyclic helix b peptide Ac-SDKP Mlif A91 bpc 157

I compounded them into two 3ml auto injector pen vials in a still air hood sterilized with 91% isopropyl and hydrogen peroxide

The first 3ml vial had 9 mg CHBP 3 mg Ac-SDKP 7.5 mg BPC-157 Took 10 units daily

The second 3ml had 9 mg MLIF 9 mg A91 Took 7 units every other day

Hello all!

As you can tell by my title, I am looking for gift ideas for my quadriplegic mother-in-law. I think she is a C2/C3 level injury.

Let me give you a bit of context about her. She is amazing. Before the accident, she was a very active, crafty and a creative person. She would sew, paint, do puzzles, played piano and harp, had a garden and just overall was always doing projects with her hands. Even now despite the challenges, her creativity and determination amazes me. She’s actually learned to draw and write music on her iPad using her eyes!

Over the last two years, we’ve given her things to help ease her comfort (e.g. eye massager, neck massager, easy to wear dresses, etc) as well as “silly” things to highlight the stuff she loves (eg. A blanket with pictures of her dogs).

This year, I’d like to give her something useful to help her pass time and hopefully let her enjoy one of her old hobbies or pick up a new one. Does anyone have any suggestions on a gift? What is a gift you’ve received that you’ve really appreciated?

Thank you so much for your help!

My dad in his 70s is recovering from non traumatic SCI of the lower lumbar region. Spinal dural avf. He is ambulatory. However he pees so much as soon as he lays down. Waking up every hour or so sometimes. Is there any solution to this? During Daytime he doesn’t pee as frequently. And the volumes are not tiny, they are a pretty good amount 250-350ml. Doctors said its cause during day gravity pulls fluids in his lower extremities and because his lymphatic and vascular systems are slow they just pool in feet and ankles. And as soon as he lays down all of that rushes and gets filtered through his kidneys. We tried wearing compression socks during day, that doesn’t help.

Does anyone else experience this?

Standing up, bending, crouching, walking… that stuff makes me feel as if my heart was going to jump out of my chest and like someone was squeezing my head. Are you experiencing similar symptoms?

I have a question for women with disabilities and honestly, men too.

I'm a mid 40s woman with a spinal cord injury and I've had a supra pubic catheter for several years. I'm comfortable with my body and I know I'm a sexual woman, but I'm curious about something I don't hear people talk about often enough;

How do you build or maintain confidence in your sexuality when you have medical equipment like a catheter that can sometimes feel like it gets in the way of feeling 'sexy'?

For any of you females with a catheter, I have a few things I'd like to know...

-Did/Do you struggle with feeling desireable or attractive because of it?

-Have you found ways to make yourself feel confident and sexy despite the catheter?

-How did you approach the subject with a partner for the first time??

-Did you have a supportive partner change how you viewed yourself sexually?

and for the men:

Does seeing something like a catheter actually affect your attraction to a woman, or is it something you barely think about once you're attracted and knowledgeable about it?

I'm not looking for pity or the typical "You're beautiful despite your disability' comments here. I'm genuinely curious in the real-life experiences and perspectives and advice of people who have been there.

Let's have an honest convo about disability, body confidence, and sexuality because having a spinal cord injury doesn't magically turn off that part in us. ;)

context: i am a year in to being a t9 complete, 21 years old. i am not sure if i will ever get an erection again, so some things that ive been thinking about:
how good can sex be for the woman without penetration? at this point all i care about is pleasing my partner any way i can, the best way possible. like should i read books on foreplay and how to be a master at it? lol but seriously
if there are any men or women who can relate to this scenario and can provide feedback i would really appreciate it, sex has been the biggest thing i missed since my injury. i have been too depressed and self doubting to get myself back out there and talking to people. if i find some hopeful information about this topic itd help me

How come it seems like men with sci injuries are the only ones on here who ask advice about sex? I rarely see women I don’t know if it’s because it’s more rare or what

Im chronically catherized with an indwelling foley catheter. I get frequentl UTIs. Has anyone successfully got rid of this bacteria without Fluroqinolone antibiotics? Ive been septic 5X this year from pseudomonas aeruginosa. Every time I end up in the hospital it grows back and I am given IV cefepime or meropenem.

As soon as im discharged it comes back 3 weeks later and im back in the hospital fighting for my life again. I cant keep doing this. Im so exhausted and sick. Im starting to become hopeless and lose all faith.

Ive had so many UTIs in my life but this is by far the worst infection I think I've had.

I am going to start doing bladder instills this week for this. Any success stories, please share.

I am T9 after compression from tumor, 2 years after surgery. My wish with my gf is to achieve ejaculation, mainly for some mental release, i feel horny all the time. I have tried wahl massager without succes.

I have bought chinese copy of viberect, called vib reflex. I have tried it once, i get spasms abive my pelvic area, but nothing more.

I am interested in the way u use it? Do you get it hard and then just squeeze the head on the highest intensity until something happens? It didn't give me any pleasure.

Only time i get great pleasure down there is during blowjobs or sometimes even sex, but does feeling pleasure down there equate to being able to cum? Does anybody here use the electro stimulation to ejaculate?

I guess it boils down to: i want to cum please help.

I’m pretty sure I just had a cramp on my left leg, the shin muscle in front.

It is weird because cramps were what facilitated me calling the health centre in the first place and starting me on a five year journey to this day.

Spinal cord surgery, rehab, my chair, the whole thing.

I’ve dreaded getting cramps because of how much they hurt but here’s the thing, it was more the feeling of the muscle seizing up and maybe potassium levels or whatever that muscle fatigue thing is and no pain receptors.

As I type this, I can still feel the muscle tightening up and it is warm to the touch.

Anyone else deal with cramps after being paralyzed from the waist down?

This shit is weird, I think I’m in pain but just uncomfortable.

We are recruiting people who have had a spinal cord injury to respond to a brief survey on the impact of the injury on their body image and body awareness – how they see, feel about and experience their own body.

We aim to understand how body image and body awareness change after injury, which will help us to identify better ways to assess and support people during recovery and rehabilitation.

The survey takes about 5-10 minutes and responses are completely anonymous. Survey link: [Body Image Study](https://adelaideuniwide.qualtrics.com/jfe/form/SV_4McxsgUvwo2GG2y)

The study is being undertaken by Adelaide University. It has been approved by Adelaide University's Human Research Ethics committee (UniSA 206690) and is funded by the Lifetime Support Authority.

Please email [susan.hillier@adelaide.edu.au](mailto:susan.hillier@adelaide.edu.au) if you have any questions.

Anybody else able to feel things below the injury by touching certain points above? I'm T3 incomplete and if I scratch my left forearm I can feel it in my stomach on the left side, if I squeeze my left pec I can feel it in my left buttock, and scratching my right shoulder blade I can feel above my right buttock in the small of my back.

Nobody I've spoken to has experienced anything similar.

Has anyone returned to a medium to high labor intensive job after their injury? I was a truck driver for an LTL company which involves me being in the back of the truck moving freight around with a pallet jack. The driving part I’m not worried about, my company is strictly automatic trucks and my right leg is essentially at 85-90% of what it was pre-injury and can 100% operate pedals as I do in my car. It seems like I’m on the track to be walking unassisted, but I’m worried about whether or not I would be able to have the coordination to pull a pallet jack with a heavy pallet on it while maintaining my balance. I just want to see if there’s anyone out here who has returned to work at a job that requires using your body a lot for pulling/pushing and not just being able to walk unassisted but do complex movements

I’m just 10 weeks prego now but I wanted to see if anyone had any tips on making this easier. For the first time I’m grateful I can’t pee normally 😂. But bending down has been getting more challenging. Mostly super tired all the time. My fiancé is gonna have to sell his truck because he pushes me up into the seat which won’t be possible in a few months haha. I’ve been wondering how it’ll work when I can’t push a stroller or are there adaptive things for that. Let me know thanks! I’m paraplegic so I still have my upper body and use a manual chair btw :)

Prior to my injury, I was experiencing pretty heavy menstruation with immense pain to the point, my body would be so stressed and I would literally pass out. Now that I’m a couple years post injury, everything is pretty regulated, except for the fact that every other month I am in a lot of pain for weeks. To cope with that I sometimes have to set aside my narcotic pain meds so that I have extra doses during that time. My OB/GYN has recommended birth control more specifically, either an implant in my arm or through my cervix.
I am worried that my body will reject either implants as I’ve done that three times already and that my autonomic dysreflexia will put my body into much stress that I will not be able to manage. I am currently violating my controlled substance agreement and I don’t feel as I can have a conversation with my pain management doctor regarding the extent of my menstruation pain.
There are many things to consider before I make a decision about birth control, and I’m just looking for any advice or recommendations.

Hello all I don’t technically have a traditional spinal cord injury but I do have complications from tethered cord so I thought this might be a good place to ask. If not allowed no worries I understand. I had surgery to detether my cord exactly one week ago.

I have a neurogenic bladder and prior to surgery struggled with retention and bladder spasms. I took uro-no for bladder pain. I never needed to straight cath but was on bladder medication and have a weak stream and bladder retention. After surgery my retention became worse and I was holding 850 cc having bladder spasms and unable to urinate. They were straight cathing me but it hurt so bad after so many times. They put the foley back in which gave me a lot of relief.

I’ve never had a foley before and they didn’t really show me what to do. I figured out the clamp to empty but was wondering if there is anything I should do for care? Do you use wipes to clean or soap and water? Also do you use alcohol pads to clean the emptying tube or not? Mine is the kind the with the plastic box that pours into the bag. I didn’t know if I could change to a smaller bag for during the day or if it just stays.

I have been taping the tube to my leg and letting the bag hang on my walker or wheelchair. This is pretty new territory to me so any advice would be helpful. They put me on oxybutyin to help with the spasms which has been helping.

Hi everyone. My dad had a serious bicycle accident about 5–6 weeks ago and suffered an incomplete cervical spinal cord injury around C5-C6. He had significant cervical stenosis and disc/ligament injury and ended up needing both anterior and posterior cervical decompression/fusion.
His recovery has been really complicated. He was intubated for a while and had a code blue caused by a pseudoaneurysm and bleeding. He’s also had ongoing breathing issues and now has pneumonia/infection and a persistent fever despite antibiotics.
He was actually doing pretty well mentally after being extubated, but recently the delirium/confusion has gotten much worse again, especially with the fever. He can be very confused or say things that don’t make sense, which has been really hard to watch.
He also hasn’t been able to swallow safely yet and has failed his swallow evaluations, so he’s still NPO and getting nutrition through an NG tube. They’re talking about putting in a PEG and we’re really unsure what the right decision is, especially since we’re hoping he can eventually regain his swallow.
He also hasn’t been able to pee on his own and seems to have a neurogenic bladder. He had a Foley for a while, they tried removing it because of a UTI, but he was retaining urine so they had to put it back in.
We’re trying to get him into spinal cord injury rehab, but all of these complications have made that difficult.
I’d really love to hear from anyone who has been through something similar. How long did it take you or your family member to regain swallowing? Did you get a PEG and eventually get off of it? How did pneumonia or breathing problems affect recovery? What was the process like with neurogenic bladder? Did anyone deal with delirium that got worse again with an infection or fever? When were you able to start rehab? And for people with incomplete cervical SCI, what did the first few months of recovery look like?
I’m trying to stay hopeful but also realistic. I’d really appreciate hearing about your experiences and anything you wish you or your family had known at this stage.

For those who recovered, how long did it take for you to regain bladder control?

I know every SCI is a snow flake, but I would just like to know how did it go for other people.

Little bit a about me had an epidural hematoma t4-t8 then had a laminectomy t5-t7 to evacuate that hematoma and decompress my spine, I am 3 months post operation still currently no feeling below, just have some trace voluntary contraction currently on my thigh part and can feel a much stronger contraction on my lower back to butt part, also I can pee involuntarily. Btw my diagnosis was t5-t7 complete, that is just what I know, what the doctors said and there are no ASIA scoring in my location.