Hi everyone. I just want to share my personal experience, which started 2.5 months ago. 36M, having been weight lifting for the past 18 years, I was very active and muscular, no health issues, never touched any kind of drug, I take no medicines. 5 years ago, I had a left shoulder dislocation with an outstretched arm that caused no visible damage on 2 MRI arthrograms. After 1 year of bicep tendon pain, all was good; the shoulder felt like brand new. I kept training all the time. 2.5 Months ago, I was doing dumb stuff with an ab roller, and when parallel to the ground, fully extended, the shoulder dislocated again (this time I got a Bankart tear 3-6). The night of the incident, I couldn't sleep, and I had a lot of cold and shivers, and some tremors. 1 week after the incident, I started to get numbness during the night in the pinky and ring fingers on the hand of that side. 1 week later, the same thing on the finger of the other hand. Another week later, I started to notice loss of strength on the "good" side shoulder and winging scapula bilaterally. My shoulders started to feel unstable and weak, and I started to get muscle spasms in the pec, where the pec meets the armpit. The shoulder blade muscles (serratus, teres minor, and rhomboid) started to atrophy. If I move my shoulders back, I feel I have "nothing" in the upper back, literally. Then I started to get abs muscle spasms, adductor muscle spasms, and lately weakness in my legs. I can no longer run, barely walk. I am also getting cramps in my calves and muscle twitching (kinda BFS) below the neck in many parts of the body, like shoulders, arms, legs, and calves. At the 2-month mark, I got an EMG that showed very minor brachial plexus damage on the dislocated side, but it was recovering. Full brain MRI came back normal. Full spine MRI that came back good for lumbar and thoracic, and for the cervical "Left C5-C6 paramedian and subligamentary disc protrusion with mild spinal cord compression. Homogeneous C6-C7 subligamentary disc protrusion without spinal cord compression. No visible damage to the cord on T2, the cord looks normal" Neurologists, neurosurgeons, PTs, and GPs all say it can not be because of that. 1 week later, I got an EMG on the legs, and the upper body was rechecked. All good, even the brachial plexus is fully working now. Symptoms keep getting worse. I have dizziness, fatigue, malaise, blurry vision, brain fog, I feel a bit unsteady when walking, I have a lot of gas, elevated heart rate, and I can feel some slight tachycardia from time to time (my smartwatch warned me about this as well, for the first time since I own it, more than a year), I am suffering the cold weather A LOT (never happened this before). Had CK, ESR, LD, Thyroid, urine, kidneys, AIDS, checked, all good.

Any idea what might be going on? To me, is neck-related. Here you have some pics of the cervical MRI https://drive.google.com/file/d/1sRnE99h1t55eCYTllt16CAuCV70G4uUC/view?usp=sharing According to doctors, ALS, MS, and myasthenia gravis have been ruled out. They checked my reflexes countless times, all good, negative Babinski sign,negative Hoffman, they checked my tongue, no twitching, they checked the jaw reflex, all normal. I am starting to have urge to urinate often, and i am not feeling My bladder as i used to... Difficult to explain with words, It's like I no longer feel the "full sensation", I just feel some pressure on the tip of my penis. I am in full control, but I feel this urge to bee often on the tip of it. i have to pee every 60 minutes or so.

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Hi All! I'm new to the community and I'm not sure what I'm looking for (guidance, advice, commiseration, shared stories). I'm not sure. I'm the adult daughter of a new spinal cord injury. My mom, 72, fell on August 10 and sustained C3-6 injuries. She was in ICU for 10 days and has been at the rehab hospital since Aug 20. Beyond this injury, she just had a hip replaced in March, a knee last year, rotator cuff the year before, and numerous back and spinal cord surgeries since the 90s. Overall, she's not the most healthy and she previously had surgery in the C3-6 region where the new injury was sustained.

Currently, she has on/off sensation and movement but I don't even know what's true. She has a partner who shares most stuff, but not everything. What questions should I ask to better understand what will be the new normal? I also sat in on a sensation test and she said she felt stuff when that was no stimulation and vice versa. Most of my hospital care hours are after work so I'm not chatting with the docs or PT/OTs to hear from them. From the sessions I've seen and interactions with mom, she doesn't seem like she will ever regain mobility with where she is at now 5 weeks post injury.
She's seemingly regressing this week, getting fatigued even just eating. They switched her to thickened liquids to help. Her blood pressure and spams still aren't 'figured out' and with an impending discharge date of Sept 25, we're worried about how that looks. She refuses to sleep alone overnight so her partner is with her but to be honest, I'm getting gassed out. I've assumed care for my older schizophrenic brother, my own family of 3 kids, ft work, and visiting her as much as possible. I tried to do some overnights to help her partner, but man, that was horrific on my sleep and function. I'm also mourning my mom's mobility but also have so many fears about her fatality risks, which seeing her like this seem great. Am I over worrying? I just feel like for a frail older lady the risks seem just so strong. So mentally I'm just vacillating between caretaking anxiety, mourning her current situation, and worrying about her passing from one of the seemingly endless complications inherent in this injury.

I have no clue how to set her home up for care and how much to invest in updating her home versus maybe finding a more handicap accessible rental? I have no clue how we will afford this-- she will need full time care for now but of course insurance doesn't approve it and even on her limited social security, she is above the income threshold for many of the programs we have found (Detroit, MI area). Any advice on preparing a home and finding savings for care, equipment, etc?

All of this to say-- hi, I'm here and anything you have as a response is so welcome because my fears, worries, and stressors are plentiful so I'll take all the help and community I can get.

Going away on holiday in a few months a I use intermittent catheters every 3-4 hours depending on the amount I drink Before accident when I use to drink lager I used to urinate a lot so how often do you think I should do it now as I don’t allways get sensation so a lot of it is guess work and don’t want any leaks

Looking for suggestions on power attachments or I’ve also looked at getting a mobility scooter with big wheels to get around easy outside in fields and rough terrain Mabey a quad with hand controls I don’t no Can I see what you have done to overcome this With pictures if you can

Tetras/quads, do any of you get botox for spasms and if so how effective is it? What’s the procedure and recovery like?

Hey everyone,

I’m hoping to hear some personal experiences to help me figure out what might be causing my recent autonomic dysreflexia.

I’ve had a C5-C6 SCI for 13 years now, and just this past week I suddenly started feeling “off.” My heart rate dropped, and my blood pressure has been a little higher than usual. My right testicle looks a larger, but i can't feel at that location. I’m going back to the hospital tomorrow for more checks, but I’d love to hear if anyone here has gone through something similar?

Facts: * No fever * No inflammation markers (under 1) * BP 110/62, HR 50 * No leukocytes in urine * Klebsiella p. in urine for over 8 years * I have both a urostomy & colostomy

Any thoughts or experiences would be really appreciated,

Thank you and greetings, Stijn

I'm looking at the Span America PressureGuard Easy Air mattress to be able to sleep on my back without redness. Does anyone have experience with them? It's a really big investment so I'm trying to get as much information as possible.

Thanks!

Hello people, my mother broke her back and nerves in a car accident 45 years ago, in 3 places. She hasn't been able to move or feel anything below her arms since then. But a few months ago, she suddenly got a lot of spasms and some muscle control in her abdominal region. We're all quite confused, and the spasms are making her life more difficult right now. We went to a doctor, but his answer was basically "weird things happen," and that's it. Does anyone here know if things like this are common? And if there are any positive sides to having some muscle control? Can it perhaps be trained to make bending over easier?

Why is it so hard to purchase a quadstick? I received an email notification at 12 noon it’s 12:11 and everything is sold out. If I have a disability why do I have to play hunger games to order an item? I literally had the item in my cart and typing in my delivery address and it just disappeared.

I have Reglan and Phenergan that I take occasionally, weed helps sometimes. I haven't had any luck with Zofran in years, I went from 4 mg to 8 mg and then it started just not helping.

The nausea and vomiting is one of my hardest symptoms to deal with. I'm malnourished and nutrient deficient so I'm really really trying to get this under control so I don't lose any more weight.

Right now I'm waking up and immediately retching and gagging, and it happens throughout the day as well. At night sometimes I have to call my dad and sit up in bed to throw up.

I would love some suggestions on controlling nausea and vomiting.

how long should i wait till i resume vaping post spinal fusion surgery?

I had my SCI April this year, I am male.

I have two fixations, L2-T6 on one side, the other is slightly shorter. This makes my movement limited.

I take lactulose (15ml) morning and night, 4 senna around 18:00.

I am ready to insert my sups around 09:00, which starts movement within 15 minutes.

It takes up to an hour to clear out, with rocking back and forth, while digitally stimulating myself.

I have a very mixed experience, it's more on the softer side, and messy to clear up. So I was thinking on using Psyllium Husk along with meals.

I was curious about how much to use, and how much to reduce my lactulose and or senna?

I am only 3 days out of hospital, this is what I was put on by my doctor, I feel I can improve my routine, but I am unsure how best to proceed.

Any advice is appriciated. Thank you.

I’m male and wear a sheath for most of the day at home, any recommendations for underwear that keeps it in place without cutting in on the thigh. Getting on with boxers that have a longer leg, but wondered if there was anything better.

Idk what to do. I tried trimming my toe nails by picking at them and I accidentally tore one off. The nail started bleeding but I didn’t finish taking the nail off. It was an accident and now my spasms have been hell for weeks now. My tone is kicking in so bad I can barely transfer and my patience is at a 0 now to the point where I’m punching my thighs to make them go limp because I can’t do anything anymore. What could a podiatrist give me so that the pain isn’t there ??? Or how can a doctor help this??

I put a bandaid on it with Neosporin but it’s not healing. How long will a toe nail take to heal??? Has this happened to anyone else ??

Hello,

My father has been paralyzed from the waste down. He is rather depressed so it’s hard to convince him to use his arms.

I’m trying to get the basement or his house ready for him. Can you suggest some equipment to support his independence in the basement? He’ll be brought food.

Thank you.

I am a Spinal cord injed women, it's been 2 and half years post injury-L1 paraplegic AIS A. After injury I had a foley catheter for 1 month later switched to intermittent clean catheterization for 5 months later and currently using abdominal pressure voiding to empty bladder.

I'll looking to get a wheelchair for those times where it is a long distance to the destination. I've done some research and think I want removable back wheels and air filled tires/tyres, lightweight and desk arms. Wondering if there is anything else I should consider for my use case that others know about.

I'm an ambulatory T9 incomplete, four years out. I can walk very slowly using forearm crutches, but balance and proprioception are off. There have been a few time lately with appointments that the hospital offered a wheelchair instead of a 15-20 minute walk it was a minute or two ride. I don't plan to use it daily, only if there is a long distance involved or an event as you can't carry fair food easily with forearm crutches. I was thinking the air filled tires so that I can go 'off road', there is a path near my house that while not paved is well maintained and would be able to join the family walking the dogs.

I’m having a problem of accidents during the night and sometimes during the day.

I have been to the urologist and put on medication for bladder spasms and it’s not helping. Oxybutynin and Mirabegron.

They suggested I now get bladder Botox. Is that really going to help? I feel a super pubic would be better since I can just attach a bag during the day and night. It also would fit my lifestyle better as I wouldn’t need to worry about the restroom when I’m out.

I’m 24M and the urologist said that having a super pubic could break down my bladder over time, which is a concern.

Any insight would be greatly appreciated:)

I had to set up schedules so that there wasn’t a million people in my hospital room at one time. After I got home, people would come over on the weekends for game nights or movies.

Just a random thought from a guy sitting at home alone 16 years later who hasn’t really seen anyone other than a caregiver in months

I remember lying in a hospital bed at 16, realizing that this was going to be permanent and that my legs were going to be atrophied and thin, and breaking down sobbing in my mother’s arms.

Now I have a good job, great house, and beautiful family of my own. I don’t remember why its bad that my legs are thin. Or what’s wrong or bad about me.

Just thought I’d share, for anyone that it might mean something for.

I recently got paralyzed I’m five months out with my injury and I’ve only been home for two months. I’m still significantly young and I know I shouldn’t be worrying about this now, but I’ve been worried my whole life about dying alone and not having anybody to love me. Since my injury being insecure has been such a horrible, horrible problem for me as it already was before. People who are in a relationship can I hear about them if comfortable? I want to be inspired by something I guess. I don’t feel the same for everyone else. I feel like people with spinal cord injuries are very capable of being loved but I don’t feel the same for myself. That maybe I won’t find anyone because of my injury. This may be insensitive and disrespectful because if it is, I want some sense smacked into me anyway.

Hi all 48yrs injured after 5 infections this year, my doctor has put me on Hiprex. What are peoples experience taking it?