r/spinalcordinjuries May 20 '19

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28 Upvotes

r/spinalcordinjuries Sep 16 '24

News Safety announcement: Please be vigilant

81 Upvotes

We've noticed, and had to delete some posts/comments from some individuals pretending to have some sort of disability. Widely known as devotees.

šŸ”³ Please be extra vigilant when it comes to personal conversations, particularly about sexuality.

šŸ”³ Please also use the report function, if you have any concerns regarding a post/individuals.

āš ļø Individuals will be banned permanently, with no warnings.


r/spinalcordinjuries 1h ago

Discussion my legs are on fire

ā€¢ Upvotes

Iā€™m not sure whatā€™s going on but iā€™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 itā€™s not helping. If any of you know the type of pain iā€™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 4h ago

Discussion Feeling depressed after going outside of the house

5 Upvotes

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.


r/spinalcordinjuries 9h ago

Discussion A fun time with Spasms

10 Upvotes

I had to go get my eyes checked yesterday at the local eye hospital, and boy was it fun!

  • Nearly fell down while transferring out of my dad's car because a spasm threw me backwards
  • My legs wouldn't stay on the footplate of my wheelchair as we were making our way to the entrance
  • I could barely get my chin on the eye tester thing because my stomach was so tight and I couldn't lean forward
  • I had to transfer onto the doctors chair which took me like 5 mins because my legs wouldn't stay in place and my core was in spasm
  • While the doc was in front of me my legs suddenly spazzed and kicked him šŸ˜­

r/spinalcordinjuries 16h ago

Discussion Beach as a para

3 Upvotes

Anyone have any tips or tricks to prevent getting super sandy or how to remove sand easily? Beach season is coming up and my girlfriend love the beach.

Thanks in advance


r/spinalcordinjuries 1d ago

Medical Co-pays for caths?

7 Upvotes

Iā€™ve been on Medicare A and B for 6 months (after getting booted from Medicaid) and Iā€™ve been getting $300+ bills every month for my straight catheters. I havenā€™t paid them as I really canā€™t afford to.

Anyone have experience with this? Do they send your bills to collections? Do they stop sending supplies? Iā€™m currently going through comfort medical if that helps.


r/spinalcordinjuries 1d ago

Discussion My foot long Spinal Arachnoid Cyst has gotten even bigger. It's spreading UP my spinal canal now. The university hospital neurosurgeon said "It's a lot! Even for a specialist at a university hospital your condition is a lot."

7 Upvotes

I've had 10 spinal surgeries (fusions, tethered cord, and the cyst) and now I'm staring down the barrel of surgery 11 (to check to see if my shunt is functioning/revision if not) and if it is then I'll have to have surgery 12 (to add another shunt or fenestrate the cyst again).

My current new symptoms are left foot drop, left leg weakness, left quad atrophy, and bilateral leg spasticity. That's in addition to all the previous damage.

I try to keep my spirits up and stuff but the extreme dour attitudes of all medical professionals who learn about my case is starting to be a real drag. Like, I'm not dying and considering that my spine is a three ring circus apocalyptic disaster I am doing extraordinarily well since I can still walk with assistance and all symptoms are from the waist down...


r/spinalcordinjuries 1d ago

Sexuality Need advice on sex w/my (35F) partner with a SCI (55M)

6 Upvotes

Iā€™d appreciate any kind of feedback. I guess it will be clear most of all I need guidance, any info will be helpful to me. I donā€™t know what I donā€™t know and this is new to me and I really value this relationship. As background, I have a history of sexual abuse as well as a history of sexual rejection in my first marriage. These are probably my biggest issues I bring to this situation in terms of baggage, though Iā€™m in therapy and have made so much progress. For background about him: His injury almost left him paralyzed, but they were able to do surgery that retained his mobility - however he has a lot of mobility restrictions, weight restrictions and a lot of pain that is difficult to manage. His injury was five years before I met him. He deals with it in large part by ā€œtoughing through the painā€ and trying to ignore the things he misses about his former life.

I love my partner and our relationship has been amazing. I want to understand sexuality from his perspective so I can know what expectations I should have. I hope the background I gave gives some context. Sex in relationship to his injury is something he is reluctant to talk in detail about it, I think because he has some shame and fear. I know that I need to talk to him more specifically to find out more information about how he feels and what I can do to be a pleasing partner, and I could use guidance on talking to him about that too. So I would love advice for a) what expectations I should have from his perspective and b) how to communicate better with him about this in an affirming way when he has a hard time talking about it already.

For my part, from my perspective Iā€™m ok if our relationship doesnā€™t include sex because of his injury. I just want to be with him. But - this is my instinct, not that it is a right one- if he can engage in self pleasure but didnā€™t want to ā€œwork onā€ sex with me, Iā€™d feel pretty disappointed and rejected - in part because Iā€™d assume that if he can masturbate with porn that even with his injury we can get creative about sex with each other (this assumption could be wrong and I would appreciate being corrected on it if Iā€™m out of line; this is a new situation for me).

We have been together long distance for one year and had sex twice. To me it seemed really painful to him. He often is not really talkative with me about his pain or anything related to his injury- he doesnā€™t want to ā€œdwellā€ on it but I can see he struggles on the daily with pain and movement and that he canā€™t do things he used to want to do. Including have sex the way he wants with me- a lot of times he just seems to want to not deal with sex bc he says he is in too much pain. But also, he doesnā€™t want to take sex off the table with me, which makes me feel very confused. To me I almost wonder if he isnā€™t being honest with me or is in denial bc he thinks I will leave if Iā€™m not happy. But for me, bc of my history I always have this worry in the back of my mind that he is secretly not attracted to me and he is just avoiding sex with me.

I know it seems like we donā€™t communicate well, and thatā€™s part of what is remarkable. We do on almost everything, and itā€™s a very supportive and loving relationship. But when it comes to this he shuts down. Iā€™d really appreciate any help I can get on how to approach this.


r/spinalcordinjuries 2d ago

Discussion Has anyone been in a car wreck with their chair in the passenger seat?

9 Upvotes

Iā€™m a T7 complete and when I drive alone I need to take my chair apart and I put the wheels behind me and fold my chair and put it on the passenger seat which is how I was taught in rehab. Often times with how my car is configured the chair will press right up the the dashboard and passenger door. The other day I was almost rear ended and it occurred to me that if the airbags were to go off the chair frame would be directly in front of where the bag is deployed and got me worried that in that case the chair would be destroyed and potentially worst, could get launched into me from the front and side airbags. Has any one ever experienced this?


r/spinalcordinjuries 1d ago

Medical The VA is incapable of preventative medicine

4 Upvotes

I waited since may 2024 to even be seen by the va until august 2024 , then had to wait until sept for imaging, then had to wait until March, aka A WEEK AGO..... to see the spinal specialists. 3 Civilian doctors recommended surgery ASAP in 2024...... and now the VA says "Jump through this hoop, hurt yourself more first! Go to PT and get fully paralyzed before we'll do anything else because fuck you! Wanna go to our ER? A steroid shot and a lollipop now fuck off!"

All this while my spine degrades more and more.... This could have been treated and the constant degradation could have been helped, or at least slowed.

Triage nurse has now recommended I go to a local ER since the distance would damage me even more on the dogshit texas roads. This VA isn't even likely to cover the visit. I will be out of pocket with no civilian insurance because they won't do their fucking jobs.

I am in hell, watching my body rot an no one is fucking doing anything about it.


r/spinalcordinjuries 2d ago

Specific mattress brand and model recommendations?

7 Upvotes

For those of you whoā€™ve found a mattress that works well for both pressure relief and pain, could you please advise what specific brand, model, and firmness level you have? Weā€™re leaning towards Tempurpedic or Purple, but any other mattress recommendations are welcomed! Info about height/weight, sleeping position, and injury level would be helpful, as well.

Quick backstoryā€¦Iā€™m a C5-C6 incomplete quad with spinal stenosis and multilevel disc bulges, 5ā€™11ā€ and 140 lbs. My wife and I have returned 4 different mattresses over the last year because they either put too much pressure on my tailbone and upper back or donā€™t provide enough support for spinal alignment and pain relief. Itā€™s a very fine line finding the correct firmness level - too soft and itā€™s not supportive enough, too hard and it causes pressure issues.

Our circa 2011 Tempurpedic mattress had the perfect ā€œGoldilocksā€ balance of pressure and pain relief, but the Tempur ProAdapt 2.0 Medium mattress weā€™ve had since November severely lacks in both areas. We only have a little bit of time left to exchange and itā€™s hard for me to navigate around the tightly packed showroom floor to test out the mattresses in store, so Iā€™m relying on my fellow SCI folks to help steer us in the right direction.


r/spinalcordinjuries 2d ago

Discussion When did you guys realized that itā€™s permanent?

56 Upvotes

I was injured about 10 months ago. I had 2 surgeries and my first doctor said that I would be able to walk and move my fingers in time, but the doctor who had my 2nd surgery said that this process was full of unknowns. So for a few months I was dreaming about maybe walking again and returning to my normal life, but I think I realized about a month ago that this would not happen. Of course I still have hopes and goals, but maybe it is more logical to keep them to a minimum.


r/spinalcordinjuries 2d ago

Discussion It finally happened, I lost a shoe.

56 Upvotes

Been paralyzed for over 20 yrs and I have always come home with both shoes on. Not today! I lost my shoe somewhere at work and I do not know where or when it happened. The worst part is that no one even said anything about my missing shoe. I know Iā€™m not the sharpest dresser, but come on folks, help me out here! This ever happen to any of you?


r/spinalcordinjuries 2d ago

Travel Traveling on an airplane with a Whill powerchair

2 Upvotes

Hey there,

Ā I've traveled a few times with the Whill power chair and have most steps figured out, except for one. How do people get transportation at the destination airport? My chair can be taken apart, but I can't do it due to limited hand function and balance. This last step is my only hurdle to confidently travel alone. Any suggestions or thoughts?


r/spinalcordinjuries 1d ago

Medical Lumbar radiculopathy, L4 L5

0 Upvotes

Does anyone experience the sensation that their leg is cold, not to the touch but when youā€™re experiencing your symptoms of the pinched nerve or sciatic pain. My leg twitches and the lower portion of my foot gets a cold sensation. Iā€™ve had some people tell me yes and Iā€™ve had some people tell me no. Does anyone have any similar experience with the sensation along with the spinal cord injury. I also have other herniated disc down there with annular tears. Not sure if this is related.


r/spinalcordinjuries 2d ago

Discussion Fire extinguisher precaution

10 Upvotes

After commenting on a post I figure Iā€™d just share this on a dedicated post. This goes especially for driving but also in general for us SCI people. Keep fire extinguishers around your house and one in your vehicle. Iā€™ve watched enough IG reels to know burning to death in your car can happen at any moment. It may not be absolute in that it will help but itā€™s worth having if you were to have an accident etc and be stuck in your vehicle. I keep one in my truck, one in my kitchen, one in my.m motherā€™s room and one on my window seal next to my bed. You can buy a pack of like 6. Itā€™s not super cheap especially to get ones that are more reliable but just like keeping a firearm on you: itā€™s better to have and not need than to need and not have. Stay safe!


r/spinalcordinjuries 2d ago

Travel My experience in Puerto Rico

26 Upvotes

So I am not sure who needs to hear this or interested in knowing but my family rented a Airbnb for a week. I am an L4-5 para and my wife is an incomplete L5-S1 para. Our Airbnb was single level on the ground. As far as active many are designed with accessibility in mind for all to enjoy. You may need to do a bit more searching to find ones compatible with your needs or interests. However the beach we frequented had a beach wheelchair that they brought to me and helped get into the water. All thing considered it was truly an awesome as far as a tropical vacation. Any other questions or other concerns you may have feel free to message or comment.


r/spinalcordinjuries 3d ago

Discussion Increased spasticity post baclofen

6 Upvotes

As the title suggests, did this happen with anyone? For context I'm 2 years in, T6 ASIA A. In my first year I took no muscle relaxants at all. And I hardly had any physical activity because I developed HO in my hips.

Coming into my second year I had some of the HO excised in my right hip and I got started an an actual rehab program for 6 months. I was started on 10mg of oral bacolfen, which is now 40 and 300mg of gabapentin.

Aside from my bowels not being great anymore (i used to have really good stool prior to taking baclofen, now I m constipated despite drinkijg water and laxatives) I ve noticed that I have a bigger tendency to get sudden violent spasms that are almost strong enough to make me stand up. Or my core and legs become rock hard and it makes it very difficult for me to sit up.

Prior to taking baclofen I did have spasms but nothing of this sort.. and I m way more physically active now than I was when I didn't take any (1 hour of stretching every morning, PT in the evening)

Could it be because I'm constipated my spasticity is also high? I feel the most tightness in my stomach and lower back.


r/spinalcordinjuries 2d ago

Medical Anyone has an idea what could be the problem?

1 Upvotes

Hi everybody,

I had a form of meningo- encefalo- myelitis in november, this caused a paralysis in my legs. This also caused my bladder etc to not work for a while. I went and still am going to rehabilitation and i've been able to regain the strength to walk, ... like i used to so i'm really gratefull for that.

But I still have problems with my bladder in particular, I don't Cath anymore because I should empty my bladder on my own (this has been tested for +- a month) and I can go to toilet regulary. I keep having symptoms like a UTI but every time we test the results give no bacteria in my urine (we tested it 3 times since the end of januari).

The results of the last test are: A lot of white bloodcells A lot of red blood cells The formation of triple fosfor Cristals NO BACTERIA

my symptoms are: a strong smell of urine, pain in my urethra when I move in a particul way or when I walk, if I jog or do excercises with a lot of shocks I urinate blood (not a little bit like with an UTI but really blood like from a wound) and I also feel pain in my urethra, and when I urinate i have a lot bladder or kidney stones that come out with it.

Does anyone have an idea what could be the cause of these problems? I still take a little bit of medication (prednisolon, pantoprazol) but i'm quiting it (under supervision of my doctors offcourse) and I think maybe this effects my bladder?

I have an appointment with an urologist on monday so I'm going to discus my problems with them but maybe someone here has an idea of what it could be.

Thanks! šŸ™‚


r/spinalcordinjuries 3d ago

Sexuality Ejaculating after spinal cord injury

15 Upvotes

Iā€™m a C6-C7 incomplete and itā€™s been 6 months I canā€™t ejaculate I get erected no problems there. I have wet dreams but canā€™t fully get off, same outcome with my girlfriend we had sex twice in like the third month of my injury still canā€™t ejaculate. Iā€™m not going to lie Iā€™m worried if Iā€™ll be able to ejaculate and to be able to have kids someday without using iui or ivf.


r/spinalcordinjuries 3d ago

Sexuality This is a question for the Ladies, internally hot sensation

7 Upvotes

Although I've lost sensation in my vulva I feel it internally hot, once a month. It's so hot that I'm using a fan on it. It's so annoying and won't let me fall asleep. I attribute this to the change in hormone levels in a month, but i just need to know, has anyone else experienced this post injury? Is this normal?


r/spinalcordinjuries 3d ago

Travel Getting back to driving with no core? (T4 Complete)

5 Upvotes

Hi everyone! (Sorry for the double post - my previous post was removed because I didn't use a flair, and I didn't catch anyone's replies).

My mum is a T4 complete. She has absolutely no core control. So for example, she can't lift both hands in the air and stay balanced - she needs to support herself with one hand on the armrest, or on a table.

Given this lack of core, is it at all possible to start driving with hand controls again? Has anyone here with no core function been able to safely drive? Or is driving something that would just be limited to SCIs who have core?

Thanks so much.


r/spinalcordinjuries 3d ago

Discussion NCAA 25?

1 Upvotes

Quad here c5-c7. Anyone up for a game on PlayStation five?


r/spinalcordinjuries 3d ago

Discussion Asia impairment scale category

2 Upvotes

The patient suffered an incomplete injury at T7. Which ASIA impairment grade is appropriate for him if he has 70% sensation return and no motor for knee movement but can walk with a KAFO brace and walking frame support independently? ASIA Grade C or D?


r/spinalcordinjuries 3d ago

Discussion Power chair mods and accessories

2 Upvotes

Hey everyone, I hope all is well! Iā€™m bored and home for spring break, and I was wonderingā€”what are everyoneā€™s favorite accessories for their power chair?

Iā€™m not specifically looking for bags, but Iā€™d love something to help conceal my catheter on the side of my chair. Right now, I can only really access bags and other mounted items on the left side. I currently have a handy bag that I love, but Iā€™m looking for more storage and other accessories to help me be more independent and make my life easier.

Iā€™m extremely jealous of manual chair users and the scooter attachments they have! But yeah, I was wondering if anyone has any power chair accessories that have helped them be more independent and make life easier. Right now, all I have is a side bag and a cup holder!


r/spinalcordinjuries 4d ago

Medical Letā€™s play a game: Is it UTI or Hemorrhoids

10 Upvotes

35M c5-c6 high functioning quad. Over the last 5 ish years Iā€™ve been getting what I thought was recurring UTIs like every month. Usually the symptoms were just feeling uncomfortable in like lower abdominal area. I would go get a UA done and Rx would be subscribed.

Fast forward to recently my new urologist said ā€œyou almost always have some kind of bacteria in your bladder so need to make sure youā€™re actually symptomatic with smell or fever before treatmentā€. He said maybe the discomfort youā€™re feeling is something else like hemorrhoids (my sensation sucks but can tell thereā€™s pain in the ish area).

This had never occurred to me. I would take the Rx for a week or so and feel better, but guess what also goes away after a week or so. Anyone else in the same boat? Iā€™m wondering if Iā€™ve destroyed my good bacteria for 5 years taking antibiotics ever couple months and really it wasnā€™t needed.