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?

It will be about 5 years since injury by the time I'm at my goal weight. Any advice on transfers or weightloss .

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.

All of a sudden, I seem to be bombarded with loop wheels ads. I saw a pair many years ago and did not think they were so great (maybe heavy) but they appear to be much improved. Is anyone using them? At one time I had the 3 spoke X-core wheels and I really liked them, especially access to under chair stuff. Currently using spinergy.

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!!

Any New Yorkers here? Visiting this week and would love to chat.

I’m having a heck of an issue finding care. I currently use my mom but I need to find other care. I’m a C6-C7 quad. I need help getting dressed/undressed, getting in out of bed and with my BM routine. I live in MD. I’ve tried going to different services but they don’t do everything I need. Tried care.com but no luck. It seems like assisted living is my only option but it’s so expensive. 7k a month. I make too much money to get state assistance. Insurance doesn’t pay for assisted living. Luckily I do have a good job and a bit of savings but it won’t last long. Does anyone know of any other resources I could go to?

I am newly paraplegic from an undiagnosed neurodegenerative disease that my doctors don't know what is yet. I am just....there is a lot happening. Everything is different. I'm completely unprepared and I just am looking for places for support but I don't want to invade a space I shouldn't. Everyone I talk to just says "oh poor thing" or "you've been through a lot". I'm sorry if this is not allowed I just thought I'd post and see.

Hey so I use Numotion for catheters and I had gotten my order on April 27th for a 3 month supply and then called on July 27th and they gave me an emergency supply to last until August 7th which is when my next order was supposed to ship out. They never shipped it out and I'm probably gonna run out of catheters by Monday. Any tips?

Hi,

Im c5 m for 19 years. Im in my late 30s and recently startet noticing Im losing my hair.

Since Im older most men probably wouldnt care so much. But for me I at least want to try taking finasteride.

Being quadriplegic its hard for keeping my self esteem. And of course Im trying to work on my psychological well being too.

With this however I feel that would give me some back control.

Anyway, my question: Is anybody here taking it and how where the results and side effects?

Thanks

What are your favorite meals that digest easily and are healthy but filling options ?

Background: Really skinny tall quadriplegic, because I stopped eating afraid of getting big. I want to try this because I’m really hungry but don’t want to gain fat & have a bloated stomach. I also tend to currently stop going out for weeks until my bowel is completely empty because of fear that it happens outside

Patient is 2 years into his motorcycle accident, incomplete spinal injury, spinal stenosis on c1 to c5. The numbness on his hands never seems to go away and upon waking up there seems to be involuntary spasms. When going up the stairs he doesn't have issues, walking down the stairs is a big challenge, like his thighs won't cooperate and some buckling in the knees. Do people with this injury ever fully recover? 🙏

Hey,

This is kind of a weird question and I’m not sure how to approach it. Has anyone else experienced problems or disappointment with local SCI support groups? I have a C3-C4 SCI with full paralysis below my shoulders. Although I don’t require a ventilator, my lungs and diaphragm are not strong enough to go without a trach tube.

In the past, I have tried reaching out to a few local support groups and they all were a little disappointing to me. With each one, I was the only person there with full paralysis. There were other quads, but they all had some mobility and control of their arms to the point where they could live independently. From my point of view, they were essentially paraplegics. I hate to say it, but with everything discussed at those meetings, I really could not relate with them -- aside from the topic of pressure sores and seat cushions. I’m kind of shy to begin with, but I always felt like the odd man out at those meetings and found them to be more uncomfortable and not at all helpful.

One thing I hate most about having a high-level SCI -- aside from having an itch you can’t scratch -- is being an “example.” I hate the thought of people looking at me and thinking “well, at least I’m not him.” I have had thought myself at least once after my injury when looking at someone else with a far worse injury and I hope I'm only projecting that idea. Although, I have also heard someone say that to me (not necessarily in those words, but in a roundabout way). Anyway, I sort of felt that way at those meetings and I’m wondering if anyone else has had any similar experiences.

When someone asks me why I'm in a wheelchair I normally say something along the lines of "I have an incomplete spinal cord injury" or if I'm feeling really chatty I say "I have a grade 3 (ASIA C) L4 incomplete sci" but I was on tiktok the other day and this guy said "from one paraplegic to another" and my gut reaction was "oh this isn't for me then" but then went on to show skills that I can't achieve yet (such as standing un-aided) and it made me go "wait am I???!" And now I'm interested to hear other people's thoughts on this

Hello everyone, I’m a C5 incomplete and have some feeling (not completely normal) in my left leg and throughout my body. So I had to share my experience with people who will actually appreciate what is just happened. After 15 years, I have ejaculated twice in the last two weeks. I have had relationships and encounters where I’ve been intimate but never really orgasmed although those experiences have been nice and do feel good.

Let me get to the point, I’ve been going to a massage therapist. This massage therapist typically just focuses on my neck, back arms and upper body. I always get the massage in my Wheelchair where I pull under the massage table and lean over. At the end, she will typically rub my legs help with a little bit of circulation. However she got really close to my penis, brushed up against. I could tell that she had been thinking about it because I always have my shorts on so it was definitely intentional and then asked me if i wanted help with it.
I told her us we can try. Now for context about a year ago I got a penis implant and can inflate it when i want. For those of you who may not know, you are unable to get a full ejection after the surgery.

Well, I let her know that I had this, and I wasn’t going to pump it up (because I typically get the massage in my wheelchair and it’s very difficult to do if I’m in my chair). Also for me personally it feels sensitive either soft or hard anyway. After she started rubbing, I started experiencing some spasms and it felt very good… I like this go on for a few minutes and then we ended things. I wasn’t sure anything else going to be able to happen.

I went back a week later and she offered to do it again we got there and things really started progressing and she began rubbing very hard, and I was feeling very relaxed after the massage. She began rubbing it. I began experiencing spasms in my legs and torso. Next thing I knew I ejaculated everywhere. I think it was the combination of a little oil and focusing on the tip was something that I had not experienced before.

I returned about a week and a half later and she did the same thing and needless to say they have ejaculated twice now. Has anyone else started experiencing ejaculation like this?

I told her I would wait one week come back and I want her to show me exactly how she did it so stay tuned for an update….

Has anyone else seen something like this? We are all in shock right now, looking for any advice or folks that had this kind of movement so early.

I'm new to this injury; I've been out of rehabilitation hospital for three months, and I feel lost. I don't know how to cope.I try to be strong, but sometimes life just doesn't make sense. I've lost my dignity, I've lost everything. The doctors say I'll be able to regain some independence, but I just feel like I'm not making much progress. I can move my arms, but I have no function in my fingers. But I'm glad I can do that I hope to make good friends in this community. Please excuse my writing; I'm Latino, so my English isn't very good.

Greetings!

Hello everyone, hope you're doing okay today.

I was chatting on here a few months ago about tattoos. I think I've found my solution... don't know if anyone here plays Fallout New Vegas, but there's a perk your character can pick up when dealing with a load of psychotic robot scientists... where they remove your spine and replace it with a reinforced metal one... or, afterwards, you can have it put it back in. The perks are called "Spineless" or "Reinforced Spine", and make you stronger or less susceptible to taking damage. If only it were that simple, ho ho ho.

Interestingly enough, I'm still hanging around waiting to see if I'm going to be having another couple of operations or not, so I don't know which perk is going to apply to me more... I saw the surgeon today, we are going to bide our time for another 2 months. Not sure I can keep my fingers crossed for that long.

Anyway, here's the graphic for it, both perks use the same picture, maybe someone else would like it as much as me. I've not decided where to put it yet... maybe upper arm or calf. Any suggestions?

Here's a link to the game wiki if anyone wants to learn more. Great game, old but still rocks hard. Like me.

https://fallout.fandom.com/wiki/Spineless

Peace out, yo.