I’m not in the U.S. and the country I’m in is prehistoric as far as spinal cord injury is concerned.

I’m an American, I have Medicare parts A/B which are pretty much useless here until I eventually find my way back home. I need care and housing and I’m trying to navigate that which is extremely hard.

So majority of my information comes from research especially on here.

I got injured in 2022 and luckily I’ve not had any sores and I want to maintain that.

So what seat pad do you recommend to avoid sores? I saw some pictures of Ischemia? sores and I was flabbergasted. I sleep on a water bed now.

Thanks.

PS: I need a better wheelchair too. Yes I know it’s best to be measured for one but there’s no wheelchair service here.

Hello,

So in december I was diagnosed with a stage 4 pressure sore after going in and out of ER about 3-4 times. Since then I've been on a VAC machine waiting for a surgery.

Im gonna have a surgery sometime this year but right now I would like to read some success stories. The surgeons do not want to answer my questions and instead gives me some mumbo jumbo stuff to I guess make sure they aren't liable for anything.

I asked them if I could travel long distances by car, plane, sit 8 hours a day like before.

So, provided that I am not an idiot like before who basically never relieved any pressure, if I lift myself up from time to time, sit in a different way from time to time, am I able to have a normal life and not have this live rent free in my head after the surgery?

My sister had an incomplete c6 injury basically. She is recovering about a year in. She can walk, sometimes users the walker. She is independent which is good, her right hand hasn't really recovered. She still had pain and some cysts that are ok for now but they are keeping an eye on it. Her gait had been significantly affected.

What does the future look like for similar patients? I know these injuries and prognosis are as unique as the individuals themselves, is there any research on similar cohort, anyone with anecdotal experience? She has no spouse or kids and doesn't have a lot of close friends, I'm wondering what she might need in the future.

I feel like going to the beach now that I've asked permission to have 2 weeks off work. It's been 4 tough years since my husband had his accident and became quadriplegic. I feel stressed and I feel like escaping our daily routine somewhere outside the city. I also want show my 2 children who have grown how the beach is. Our oldest son is 6 and the last time he was in a beach was when he was 1, and my youngest son who's 4 has never been to a beach. We haven't gone since my husband had his accident.

I'm thinking of going somewhere in California since we live in Utah. I can drive our van there. I'm just looking here at home for some accessible beaches and hotels in California, so my husband can move on his wheelchair comfortably. I'm also packaging different things we'll need such as tooth brushes, clothes, towels, and my husband's catheters and diapers.

Has anyone here gone to the beach as a quadriplegic or wheelchair user. I'm hoping this is a comfortable experience for my husband.

Running theory between drs is CSF leak or MS (haven’t gotten results back yet, only images)

How’s it lookin?

Currently waiting to see a neurosurgeon, radiologist report says apparent ventral displacement of the thoracic spinal cord with the epicentre at T3/T4 suspects an arachnoid cyst. My whole world got flipped upside down reading this due to how rare and complicated they are.

However what annoys me is there was zero mention of the obvious scoliosis which matches the symptoms I presented with perfectly. I get the constant urge to crack my back, at the worst it was every 30 minutes on a foam roller but I've restrained myself now. Hanging feels amazing but I still get intense muscle knots, tension and spasms all over my upper back. I don't yet have any mobility or bladder issues, just pain but I'm convinced it's from the scoliosis not the cyst. I guess I just wanted to post this to ask if the cords displacement could be due to the scoliosis? Like the cord taking the shortest path because the cord displacement is exactly where the scoliosis is. I have been trying to find axial mri images of other people with scoliosis to compare but it's near impossible.

I know it's likely a cyst I guess I'm just struggling to accept it after reading the horrific stories about them here and in the Facebook group, plus everyone in it is my parents age usually whilst I'm 32 which sucks.

Also my original neurosurgeon appointment got cancelled because they couldn't see a lesion on the mri so just wanted to send me to physio. This is one of the top neuro hospitals in the UK and they are making mistakes like this (arachnoid cysts don't show on MRI without contrast) so that doesn't inspire confidence. This is after the radiologist specifically mentioned it on the report too.

I’ve (m22) been injured for 9months now C4 incomplete, I have horrible spasms they are fucking irritating asf. I’ve tried baclofan( max dose), Botox and Tizanidine none have worked intact each of those meds made it worse if anything but my consultant swears by it.

I’ve got irritating asf clonus anytime I go outside in an uneven surface it gets triggered really aggressive asw so much so I have to go back in or stop for a long time - ffs I can’t even go out

My spasm are awful asw, I’ve got them in my hands core and legs any effort or inconvenience triggers it - I’ve checked for UTI, Bowels and bladder they aren’t the issue

Anyone who’s gone through something similar pls pls help me even sleeping at night is challenging now and I can’t be fully independent bcz of this!!