r/spinabifida

My daughter has a Mace. We have had a busy summer. Sometimes we need to skip her flush do do activities. We skipped last night and she was crying because she said she thinks she has to poop. So we started her flush early at 10:45am today. (It's now 12:32.) She still has nothing in the rectum. Did our normal flush..(2 Ducolax before, then 400ml of water with 2 tablespoons of baby soap.) we have not needed to add Miralax in a very long time, but I did a Miralax mixture after an hour with 2 mls of water. Still nothing in the rectum. Any suggestions on how to get it moving today?

So mine is September 4th is definitely complex. They just don’t know how complex depending on how severely tethered it is especially if there’s lesions and stuff like that and I wouldn’t be surprised there’s adhesions. And then not to mention, it’s already displaced to the right because the stupid neuromuscular Scoliosis and stupid spina Bifida Occulta ❤️❤️❤️❤️❤️❤️. Also, how much damage is permanent and will hopefully gain function back in my left hand or is that pretty much gone for good?

What does everyone do for fun? I’m curious. I have met quite a few who have said they can’t do a lot of things because they have Spina Bifida, even something as simple as playing video games. So I’m curious what everyone here does for fun. As for me i play video games, go to comic and anime conventions, dress up in cosplay, watch movies, and hangout with my friends. What do you do in your spare time?

Yesterday, I made a post asking everyone about their hobbies, and I got some amazing replies. Many of you do some really interesting things, and I absolutely love seeing that side of the community. But it got me thinking about something: Why don’t we see more of this? Why don’t we encourage each other to show these sides of ourselves more often? I’ve seen many people say they can’t do some of the things others in this community talk about because they have Spina Bifida. And that honestly makes me curious about what’s going on. Why do we hear so much about the things we can’t do, sometimes even the most basic or fun things, while the things so many of us can do, and genuinely enjoy, often seem to stay quiet? I’m not saying the challenges aren’t real. They absolutely are. Spina Bifida can create limitations that other people may never have to think about. But I also think there’s something powerful about showing each other what is possible. Maybe someone sees you talking about a hobby and thinks, “Wait, I have Spina Bifida too. Maybe I could try that.” So I’m curious: Do you think our community focuses too much on what we can’t do and not enough on what we can? And if so, why do you think that happens?

My older sister was born with spina bifida, the myelomengical (sorry if I butchered that). She is obviously very medically complex. She uses crutches to get around for the most part and a wheelchair. The point of my post is she has a really terrible habit of leaving her crutches in MY car, or in the most inconvenient spaces for other people. Like on the floor where you need to walk. I’ve tried asking nicely in my own way, though I think she’s getting upset because she’s perceiving it as annoyance with the mobility aids, while I’m just annoyed they’re constantly in the way. I have a smaller disability, but I feel like I’m still insulting her with 0 intention. Is there a way that I could ask that would make her feel less like a burden and more to understand how it is inconvenient to open the door jammed with a crutch.
Sorry if this isn’t the right place to post I just didn’t know where else to.

Hi everyone! Does anyone know of a good neurosurgeon in Orlando, FL (or relatively near by) for an adult with Spina bifida?

Thank you!

My SIL will be having fetoscopic surgery at the end of the month, in a different state, to do some repair for their son who has been diagnosed with myelomeningocele spinabifidia. I’m wondering, anyone who has had fetal surgery, what kinds of things would you have wanted to have/did you get that were great to have in a care package?

F30 here, myelomeningicele. I wanna know your stories about the first time you had sex (or sex in general). Tips and recommendation are welcome as I am a virgin atm (hopefully that's about to change)

Alrighty,

You may or may not have noticed that there have been lots of updates to this subreddit over the last 48hrs. I have updated our Banner and Icon - Yes, It's AI, I'm not a graphic designer; I'm an OT.

I have also updated a few smaller sections of our page like the description, new member welcome, and flair.

At the top of the page I have pinned a few different events, resources, research items you can check out - The goal is to update the top page regularly with various events/topics that are coming up.

And finally, on the right side bar I have added "buttons" which links various resources from the Spina Bifida Association, clinical guidelines, and bowel management website. If you have suggestions for other big resources please let me know.

I'll continue to make changes, but carry on.

I don’t know how to start this without sounding awkward, but hello. I’ve lived with Spina Bifida Lipomeningocele and a tethered spinal cord for 20 years. To be honest, I’m not very informed in terms of the different types of Spina Bifida, in fact I did not know I was lipomeningocele until I requested some medical files about a year ago. So I apologize in advance if I may not know specifics pertaining to medical terminology or its understanding. Despite that, I would like to learn more about my condition and others. If this is not allowed, mods feel free to take this down or ask me to do so, but I’d like to talk to people who have the same condition as me and those who are different. I’d also like to possibly make some friends if anyone would like to. I’ve never talked to anyone with Spina Bifida before or made friends with a disabled person. My therapist recommended finding community in those who I can relate with, to which I figured I might give this place a chance. If you have any stories or information you’d like to offer, I’d love to hear it. If you have any questions for me, please ask away.

I don't know if I m eligible to post since this is my first day here, my son is 1 and a half years old with myelomeningocele.
His surgery was done the very next day he was born.
Sometimes has trouble with stool (goes couple of days without it)
He urinates normally as of now.

But the problem we are experiencing right now is that he still can't walk on his own, he can walk a short distance but can't maintain his balance and only crawls from one place to another.

Any suggestions would be helpful in this regard, people with children of the similar age what are your experiences?

P.s He doesn't have chiari or hydrocephalus thankfully.

There are many challenges we face with Spina Bifida. Some are social, like making friends or something as simple as starting a conversation. Others are physical, like bowel and bladder control. If you’ve been paying attention to my posts, you’ve probably noticed that I’ve made several suggestions about ways we might improve our circumstances. Most of those suggestions come from my own experiences. I’ve faced many of these same challenges, and I’ve found certain things that have worked for me. However, quite a few people have expressed that my answers wouldn’t work for them or that they aren’t realistic. For example, just the other day I made a post saying that parents should teach their children life skills so they can grow up and navigate life a little easier. Someone responded by calling me autistic because of that suggestion. So, instead of me telling you what I think the answers are, I want to ask you: What are some of the major challenges you face living with Spina Bifida, and what do you believe is the solution to those challenges? I’m genuinely curious to hear your perspective. Maybe there are challenges I haven’t experienced, solutions I haven’t considered, or approaches that have worked for you that could help someone else. Let’s hear what you think.

Quick summary of my two disabilities:

I have Spina Bifida, which affects my lower back and has caused deep sensory loss, lower limb weakness, and neurogenic bowel and bladder issues. (The latter only happened after de tethering surgery when I was 25)

I also have Charcot Marie Tooth disease (CMT1A), a genetic neurological condition that affects my peripheral nerves, causing things like muscle weakness, reduced sensation and balance and mobility issues.

Just curious, does anyone else have both Spina Bifida and CMT, or deal with a similar combination of conditions? Would be interested to hear about your experience.

A Conversation With Parents
There is a pattern I see over and over again in our community, and I want to talk about it.
Now, before anyone gets worried, I’m not here to point fingers, yell at parents, or tell you that you’re doing something wrong. I just want to have a conversation. Every parent wants the best for their child. You know how cruel the world can be, and naturally, you want to protect your child from experiencing that cruelty. You want to make things easier for them and prevent them from being hurt.
But sometimes, there can be a difficult line between protecting your child and preparing your child.
Over and over again, I see situations where parents of adults with Spina Bifida still struggle to let their child make decisions for themselves, even though that child is now an adult. And yes, I know, Spina Bifida is a snowflake condition. No two people are exactly alike, and everyone’s abilities and needs are different.
But despite those differences, I see something concerning: sometimes, people with Spina Bifida are treated as though their diagnosis defines what they are capable of. I see adults who were taught certain skills growing up, but were never given the opportunity to actually put those skills into practice on their own. I see adults who were never taught how to cook, clean, manage money, or take care of everyday responsibilities because someone was always there to do it for them. And eventually, that child becomes an adult who is still being treated like a five-year-old. So let’s take a step back. What does any person need in order to grow into a functioning adult? They need to learn how to take care of themselves. How to cook. How to clean. How to manage money. How to hold down a job. How to navigate friendships and romantic relationships. How to communicate. How to make decisions. How to experience failure and learn from it. So parents, I want to ask you something: Where in your daily routine are you making time to teach your child these skills? I understand. I really do. Between doctors’ appointments, surgeries, bowel and bladder routines, therapies, medications, and everything else that can come with Spina Bifida, it can be incredibly difficult to find the time and energy to focus on anything beyond the medical side of things. But that’s exactly why I think this conversation is important. When so much of a child’s life revolves around their medical needs, there is a danger that they can start to feel like their diagnosis is who they are. And they’re not. They are a person first. Do you talk to your child and ask them about their day? Their favorite food? Their favorite color? What games they like? What music they enjoy? What makes them laugh? What are they interested in? Even something as simple as taking five minutes a day to sit down and genuinely talk with your child can make a difference. Because as they grow, I want them to know how to talk about more than Spina Bifida. I’ve met adults who struggle to carry a conversation, and when they introduce themselves, some of the first things they tell people are things related to their disability. There is nothing wrong with talking about Spina Bifida. It is a part of who we are, and nobody should ever be ashamed of it. But it is only one part of who we are. Teach your children to talk about their hobbies. Their interests. Their dreams. Their favorite movies. Their friends. Their passions. The things that make them them. Because they are so much more than their diagnosis. So parents, let’s get a discussion going. What are you doing every day to help your child explore different parts of their personality and discover who they are as a person, not just who they are as someone with Spina Bifida?
I genuinely want to hear from you.

hello everyone. I am posting as a pregnant parent (21w 1d) I know that parents posting in this sub has been a more sensitive topic and I please ask that if this shouldn’t be posted here, it gets removed or we can be educated. I want to start off by saying my original post and everyone who responded to us helped me and my partner so much with our baby’s diagnosis and we honestly gained a lot of knowledge and understanding from everything everyone shared. So thank you so much.

we went to see the fetal specialist today for in utero surgery. We last saw him a month ago and he said the baby’s chance of needing a shunt is low and for the most part the baby looked like an amazing candidate for surgery. We saw our MFM on Wednesday and she said the baby looked like she was doing so well. Great movement, the hole in her heart was small and not concerning, etc. Today with the specialist we did an MRI and more ultrasounds. (For context I slept 1
Hour between my overnight shift at work and my appointment I don’t know if that affects the baby moving at all) the baby was not really moving her legs on the MRI and the ultrasound. They saw movement in one leg and not much in the other. They said it is not common for the baby’s progress to deteriorate like this and I’m still very early. They said our baby will most likely be wheelchair bound and they gave us our options. (They more so focused on termination which is not something I want to proceed with.) We asked if we could come back another day to see again and see if she was moving her legs this time.

Any comments, advice, anything helps. I just need to talk.

I have spina bifida meningocele which means i can feel when i need to pee, i just cant hold it in or pee on my own so i self cath. I started refusing overnight bags when i was a young teen and i had ckd 3/4 at the time so people werent and still arent happy yet they ignore my problems.

When i use bags, im assuming because i move so much in my sleep the catheters just fall out, or stop working or scratch the inside and HURT ALOT... But because i fell asleep thinking i was safe i usually sleep all night and then wake up to an achingly full bladder and soaking bed with an almost empty bag... And this happens alot, enough for it to be better sleeping without a catheter and somehow letting my body wake me up every 2 hours. I tell all my drs that i think its worth losing sleep a little sleep and occasionally having the same experience with the overnight catheters than using the overnight catheters and having that experience 2x the amount. Regardless its going to cause damage but all they think of doing is suggesting different overnight catheters? Or lube for the scratchy problem? But that has never helped.

Does anyone else experience this??

Would there happen to be any guitar players in here? I have some questions about how you all play acoustic instruments. I have a very short midsection so holding large guitars that sound the best is something I find nearly impossible… is it just me??

Does anyone here struggle wearing shoes because they fall off or get in the way? Or anyone not bother with them?

Have they caused pain or physical issues?

When I was 11 I was held down by two nurses and a
Catheter forced into me as I had just come round from major spinal surgery. This gave me a tonne of trauma and it took me until I was 36 to be able to use a self catheter. I can only use a pediatric one as anything else is far too painful. However this takes me so much longer to pee. I drink tonnes throughout the day and it’s such a faff having to numb myself and then try to get the catheter in.

Does anyone know if there might be any other options for me that would work better? I know when I need to pee, but my bladder does not empty fully. I then have to push to get most of the urine out but this has caused issues with my muscles now so I really need to get it sorted somehow.

Would really appreciate any help you guys have.

Thank you!!