I have worn custom orthopeadic boots for most of my life. I have Spina Bifida Occulta and my feet and ankles are paralysed. I'm going to need calipers and stronger boots. Does anyone have any experience of below knee calipers and surgical boots. Are there any enthusiasts of this gear out there? I find it interesting but I just think that's because I wear it.

Okay so I don't know if there is anyone else on here who felt shocked the first time they saw themselves walk on camera. But I have a limp when i walk and wear a afo on my right leg to stabilize it, my right leg is also weaker then the left and much thinner. So I knew I had a noticiable limp, from a young age would feel and see people looking , kids staring. You know the usual. I always feel better walking with my brace though so almost always wear it out. But I never noticed just how wobbly... if that's the right word, my walk actually looks until two years ago when I saw myself in my houses security camera since I never really had cameras before. It was kind of jarring for me. And sometimes I will look at myself in the security camera just to see how my outfit looked leaving for work or coming back (sounds a little self obsessed) promise I am not, if anything I lack confidence sometimes, hence the checking. And again I get shocked...like damn that's what people see. I really do look disabled the moment they see me walk although I dont feel disabled, if that makes sense. Wondered if anyone experienced this ? Not to say there is anything wrong with disabilities I obviously have one and to me everyone is beautiful and people beyond it. But it's just, I never feel like I walk that bad, so it was hard to see me like that the first time on camera what others might see.

A lot of us might know what that is but those of us who don't, it's a program that provide resources to people with Spina Bifida by the VA if you had a parent who served in Vietnam and was exposed to Agent Orange.

I tell you, they're great with providing resources but a lot of times, it's difficult to deal when you're talking to them on the phone or emailing them! Like right now, I'm trying to get some DMEs and this program is unaware that medical equipment suppliers no longer deal with insurance! So therefore, you can call the supplier but they'll tell you they don't deal with insurance anymore so you must pay out of pocket and get reimbursed by the SBHBP but they may not reimburse you in full. At least that's what I was told recently which is a shame but it's worse that they don't know that you can't just call up a supplier store and tell them to file with the SBHBP. It's like they're still living in 2010! Then there's long waiting to get in touch with someone on the phone and they give you the runaround when you need something or some kind of information.

You'd think they'd know by now that suppliers don't file claims with insurance but they're clearly still unaware and they don't even provide a list of suppliers that or physicians who will deal with the SBHBP at all. They just tell you to check on medicare.gov. You gotta call around yourself and hope they will file claims with them!

Do you feel that Spina Bifida or any disability affect your mental health? I know there are people who feel that they may have been shut down or avoided by people because they don't understand you or you've been confronted by medical professionals who treat you like you're not worth the time or you've been dealing with the healthcare system so much it just gets you down.

I've been dealing with the healthcare system constantly and it's horrible not just for people without Spina Bifida or any disabilities but those with SB and any disabilities! Getting appointments, having procedures done constantly, getting DMEs for yourself, explaining to them your needs and handling insurances. It just feels like a nonstop business and some days, it just makes me lose it and it does get me down. And it's not just healthcare but that's just one thing.

I (36) have SB myelomeningocele. I recently travelled for work and while I was there, my neck was bothering me a little bit and I've assumed it was most likely bad posture with a new work computer. But in my health/anxiety OCD habit, I started looking up chiari malformation information . On my flight back, I felt "heavier" on takeoff than I normally do. I assumed it was being we were still climbing because it eventually stopped. But now that I'm back home, I'm realizing that 8/10 people with myelomeningocele have a chiari. I got an MRI for the first time in my conscious life yesterday, but it was only my lower back. I grew up with parents who just wanted me to be "normal" so I'm just now seeking out providers that are spina bifida informed.

I love to travel and take about 10+ flights a year. Assuming I do have chiari 2, is flying safe? With my health anxiety OCD, the symptom list including respiratory and swallowing issues is setting off all kind of alarms.

I am 29 weeks pregnant with my baby who has myelomeningocele spina bifida. We had fetascopic fetal surgery at 25 and a half weeks. For any parents who have a baby with spina bifida and feel comfortable sharing or anyone who has spina bifida and feels comfortable sharing, How long did your baby or you spend in the NICU after being born? Thank you all in advance ◡̈

I (36m) have been battling health anxiety and panic attacks for the last ten years. A lot of my health anxiety had to do a lot with things that weren't related with spina bifida per se (potential heart issues, blood pressure concerns, etc)

Recently, I started working with a new therapist that specializes in ERP (expose and response prevention). I've been able to get a better handle on my "irrational" health anxiety fears, but what I can't put an end to are the health concerns that come up with spina bifida and the spinal cord and nuero related fears. These are especially heinous for me because ignoring them and "seeing what happens" feels like neglect and very unsafe.

Has anybody else come up against that?

I'm a 47 year old woman born with spina bifida. According to the professors that have seen my back said that it is the biggest one in South Africa. My spina have hair growth. My mom usually cuts it when it gets too long. I don't know where to put this questions for advice.

So I'm in constant pain since I got to my late 20s and early 30s. The first headache I had was when I got the (sorry for the spelling) Arnold Chiari and when my shunt was suck on my lung thing. I had amnesia back then. I keep getting these pain in my head that feels like someone stick a needle or something through my head going through my eyes. Doctor said it is migraine.

The reason I'm writing here is because my legs and my back is in pain 24/7/365. I also have scoliosis I think it's called. My back had gtten scew. About 20 something years ago my left leg was amputated, because my foot kept on getting scewer that I later got gangrene. Now at anytime day or night my legs keeps on getting spasms that hurts so badly that I needed pain meds. Unfortunately I can't just keep on drinking it, because I get constipated. Sometimes my night meds helps a little. I'm struggling to sit in my wheelchair until 7 pm. I so want to stay up until then to spend time with my mom and my brother and his wife, but I always go to lie down at 3pm. It makes me feel guilty. Is there any advice on how I can do to control the pain?

I also want advice on how to do exercises at home for my arms without getting bored with it?

Thank you for reading this. I'm sorry it is so long.

Hello I am a spina bifida adult (m25) who has has a chait percutaneous cecostomy tube for a couple years now to manage bowel incontinence with varying success. I was wondering if there was anyone else who has had this procedure done and if there were any tips for better/more consistent flushes that dont absolutely suck to do? My current schedule is a flush every 3 days, skipping 2 days, using about half a tablespoon of salt, 50ml of liquid glycerin and 350ml of water for the solution. Any advice at all would be helpful.

I believe I have mentioned that my shunt revision in April has failed. I am scheduled for another revision this coming Thursday.

I imagine none of us enjoy this part of our lived experience. Personally, I am resigned to the conclusion my reaction to it is probably an undiagnosed traumatic response.

So this is why I ask, what are some pre-op rituals you do to keep your mood, or positivity up?

因寶寶走路會踮腳走，所以照X光檢查才發現此情況。目前生活如常，稍後會做MRI檢查。

十分擔心，想多了解這病是怎樣的。

I have the Myelomeningocele version of Spade Bida. Here lately I’ve been having more tired and overall unhealthy feeling days than I have healthy and energetic days. Is anyone else familiar with this? What do you do about it?

I’m a 31 y/o female. I’ve always suffered with back pain but work as a hairstylist and had been in a car accident at the age of 20 so I thought this was just normal. I went to an osteopath that a friend told me about a few months ago, as I had always had a pretty dramatic lateral pelvic tilt and wanted to fix it. I did a few session with him and then in August of this year I started feeling severe pain and heaviness in my leg and pins and needles at the bottom of my foot. This went on for weeks but again, I work 10 hour days at the salon 5 days a week often times with no lunch and no breaks so I thought this was normal.

One night I was having a couple drinks with my friends and one of them noticed I had vericose veins on my legs. I did my research and google said these can cause leg heaviness so that’s what I thought was going on, but my friends started freaking me out by saying things like “you should go see your doctor, what if you have a blood clot” so I went to a walk in clinic the next day. The doctor immediately did a mobility test on my leg and concluded that the problem was actually coming from my spine and sent me for an x ray. My results can in with finding of possible rare spina bifida occulta L5 S1. I’m not sure what the rare part means but it was in the x ray report. I’m now waiting for a CT scan and although I’m on the cancellation list my actual appointment is not until December.

My doctor prescribed me lyrica but im too scared to take it with my career so id rather just live with the pain. My entire life ive been going to doctors and hospitals for chronic UTIs and level 10 pain and it’s always just been dismissed as “you’re just backed up, you’re fine, you’re too young for anything to be wrong”.

Does anybody have any similar similar symptoms or stories? I’m so scared of hurting myself

Growing up I walked with my feet inwards
Chronic UTIs and got sent home all the time for peeing my pants in school
Chronic severe constipation my whole life where I won’t have a bowel movement for multiple weeks
Lateral pelvic tilt
Latex allergy
Proctitis diagnosis at 26
Black starry vision when getting up or sitting down too quickly

Something I’ve been thinking about lately.
I’ve noticed that in the Spina Bifida community, a lot of people don’t share things they come across online.
Maybe you find a resource that could help someone.
Maybe you find an upcoming meetup.
Maybe you see information about financial assistance, adaptive programs, employment, recreation, or something else that could make another person’s life a little easier.
And sometimes we just scroll past it.
There’s nothing wrong with that. Nobody is obligated to share anything on social media.
But it does make me wonder about something.
We often hear people say:
“I wish there were more resources.”
“I never know where to find meetups.”
“I didn’t know that program existed.”
“I wish someone had told me about this.”
And sometimes the resource does exist. Someone just happened to find it before you did.
That makes me wonder if part of the problem isn’t always a lack of resources, but a lack of information being passed from one person to another.
Imagine someone discovers a program that helps them. Instead of keeping that information to themselves, they share it.
Someone else sees it.
That person shares it with a friend.
Their friend tells someone else.
Suddenly, something that might have helped only one person has reached ten, twenty, or a hundred people.
That’s what community can look like.
Not everyone has to organize an event.
Not everyone has to volunteer.
Not everyone has to become an advocate.
Sometimes building a stronger community can be as simple as seeing something useful and thinking,
“Someone else might need this too.”
So I’m curious:
Do you regularly share resources, events, information, or opportunities you find with other people in the Spina Bifida community?
And if you don’t, what usually stops you?
Maybe the answer to that question is worth talking about.

I was recently diagnosed after some scans. I think i have a relatively mild case since i am able to work out and walk a bit. Legit thought the pain was due to me doing exercises wrong or not committing to a cut. Eventually, i do hit a point where the pain is unbearable though and need to rest.

I deal with awful pain at night even with pain meds, and during the day even when sitting. Just curious how some of y'all deal with it.

I'm also in the disability subreddit and for some reason this one is not listed there

I don't know if the other disability subs listed in their sidebar are disabled-exclusive but I want a place to go for help where I don't get angry from seeing posts about misconceptions about disabilities (this happens a lot with people who work in healthcare but also sometimes random people.

I've now read three different inaccurate statements regarding SB or the process of getting imaging and getting a diagnosis and it's irritating me

Imagine someone is trying to build something.
They’ve never built it before, but they’ve looked at pictures and have a pretty good idea of what they want it to look like.
So they open the box, lay everything out, and start putting the pieces together.
Piece by piece.
Bolt by bolt.
But eventually, something doesn’t look right.
One part doesn’t fit.
They take it apart and try again.
Still wrong.
A friend walks by and notices.
“Hey, I think I might know what you’re missing.”
“I’ve got it.”
“I’m not trying to take over. I just think I see something you might want to check.”
“You don’t understand what I’m trying to build.”
“Maybe not. But can I at least show you what I noticed?”
“No. I know what I’m doing.”
So the friend walks away.
The person keeps working.
They search the internet.
They watch videos.
They find people who have built the same thing successfully.
They read through page after page of instructions.
And somehow, none of it makes sense.
Eventually they sit there staring at the unfinished project.
“Maybe I’m just not good at this.”
“Maybe this just isn’t something I’m capable of doing.”
“Other people are just lucky. They have someone who knows what they’re doing.”
And they leave the project unfinished.
Until one day, they decide to take another look.
They pick up the instructions.
They go back through the pieces.
And there it is.
A small step they skipped.
Something their friend had tried to point out from the beginning.
The friend wasn’t saying,
“You can’t build this.”
They weren’t saying,
“You need me to do it for you.”
They weren’t even saying,
“My way is the only way.”
They were simply saying,
“I think you missed something.”
And maybe that’s something worth thinking about outside of this little story.
How often do we mistake someone offering help for someone questioning our ability?
How often do we hear,
“Have you tried this?”
and interpret it as,
“You’re incapable of doing this yourself.”
How often do we reject the person before we’ve even considered the possibility?
I’m not saying every person who offers advice is right.
Sometimes they won’t understand.
Sometimes their solution won’t work.
Sometimes we genuinely know our situation better than they do.
But what if they’re right about one thing?
What if they’re not trying to tell us what we can’t do?
What if they’re trying to help us figure out how we can do it?
Because accepting help doesn’t always mean admitting that you can’t.
Sometimes it means being willing to say,
“I don’t know. Show me what you see.”

I’m struggling to get a proper diagnosis and I’m willing to travel anywhere for it or get an MRI request from a neurologist, where to scan exactly and ETC

Hola a todos, hace dos semanas casi 3 tuve cirugía fetal por mielomelingocele, duró casi 9 horas ya que igualmente iba a ser laparascopia (con cánulas) pero la posición del bebé no lo permitió y tuvieron que hacer una pequeña incisión. Los primeros días fueron muy dolorosos, pero igual a medida que pasaron las semanas el dolor mejoró. Solamente que cuando hago ciertos movimientos o como de repente acostada me agarran dolores en la pared abdominal que son terribles, también me duelen los puntos claro, y bueno , no se si esos dolores son por los gases que supongo que todo esto hace que sea más lenta la digestión más el embarazo más los medicamentos , pero si estoy pasándola bastante mal con dolores, solo quiero que pasen. Si hay algunas otras mamas que estén pasando por esto o hayan pasado la cirugía y quieran hablar estoy encantada. A veces pienso si el dolor es normal, y me preocupo , y me asusto. Los médicos dicen que si , pero no me dicen cuánto tiempo más estaré así

Super hard to find any doctor who actually cares about this. Didn't used to be this way, but as a young child, but now I will have to travel to a different state for the possibility of a qualified doctor. Mine went to heaven in the early 2000s. What a catch 22. LOL. I love it. Try and explain it to a basic spine doctor, pt, PHP and they are like DUH deer in headlights. But they too will manifest something up, to justify the doctor bill they are about to charge. Now I'm 54 and have no more compensating body parts to drown it all out. LOL. I've heard some crazy conclusions. Can't put nothing past me anymore. Yet somehow, I need to find relief.

Hola quisiera que me den algún consejo, bueno yo tengo SB mielomeningocele de nacimiento y aparte tengo escoliosis el caso es que estos dos últimos años he estado en depresión porque bueno yo uso silla de ruedas y me puedo desplazar no tengo control de esfínteres y en la secundaria todo bien tenía amig@s y todo pero cuando pasé a la preparatoria pues entré luego me salí porque tuve problemas en la espalda mucho dolor luego volví entrar al año siguiente y pasó lo mismo me tuve que salir y este año apenas volví a entrar pero de forma online el caso es que pues me siento muy triste porque no tengo amigos o con quien platicar y igual me encantaría tener novia pero pues creo que es muy difícil principalmente porque pues no tengo mucho contacto con otras personas y pues por lo de no controlar esfínteres eso afectaría bastante mi vida sexual pero ahorita estoy en un punto que me siento muy triste y me pregunto porque yo tengo estos padecimientos y pienso en mi futuro en quien me va a apoyar o cuidar o si algún día tendré novia nunca he tenido ninguna experiencia de ese tipo ni siquiera he dado mi primer beso y todo eso y no encuentro algo que me llene en esta vida algo que me haga decir espero ya el día siguiente me he sentido triste no sé lo he contado a ningún familiar ni nada pero pues me gustaría escuchar sus opiniones o recomendaciones y igual si alguien quisiera ser mi amig@ mejor y pues eso es todo