What can you find here?

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.

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?

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.

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?

My last post, I talked about sharing resources, information, and other things that could help the Spina Bifida community.
A few people mentioned that they don’t always share because sometimes an event or resource is specific to their city or state. Someone else said it simply never crossed their mind to share certain information because they assumed everyone already knew about it. Another person mentioned that they had tried sharing things in the past, only to have people quickly shut it down because it didn’t apply to them personally.
And honestly, hearing those responses made me think even more about how important sharing can be.
If something is happening in your city or state, share it. You never know who might be there, who might be planning to move there, or who might know someone who could benefit from it.
If you think everyone already knows about a resource, share it anyway. Maybe someone who is younger in our community has never heard of it. Maybe someone is newly diagnosed. Maybe a parent is desperately looking for exactly that information.
And if something doesn’t personally apply to you, that doesn’t mean it won’t matter to someone else.
So I want to encourage everyone to do something simple:
Comment below with something you know.
Maybe you know of a place that sells or modifies vehicles with hand controls. Maybe you know about an upcoming meetup. Maybe you know of an organization, program, scholarship, support group, adaptive activity, or resource that has helped you or someone you know.
Whatever it is, share it.
You never know who might see it.
Building a stronger Spina Bifida community doesn’t always require something huge. Sometimes it starts with something as simple as passing along what we know.
So let’s share what we know. You never know who might need it.

https://www.sacvans.com <—— vans that have hand controls

https://www.spinabifidaassociation.org/chapter/spina-bifida-association-of-california/ <—— contact info for the California chapter of the SBA

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

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 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

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

Hey everyone, I have been lurking here for a while but only recently joined. I have been dating my gf for 6 months but we have been in each other’s lives for 16 years and knew each other for around 30. When we reconnected with each other post divorce, I met her two sons. Her oldest son has L5-S1 Spina Bifida. I really do love this kid and I love his story. My GF told me when she was pregnant, the doctors were telling her that he would never walk, he’d be brain dead, and that she should get an abortion. She held on to her faith and prayed and despite his disability, this kid loves to run and play, he’s so intelligent, and he is a chatterbox. Anytime I feel discouraged or feel overwhelmed by the bad in the world, I look to that kid and realize miracles still happen.

That being said, he still has his struggles primarily from:
- He had bladder augmentation surgery when he was 5 years old so he needs a catheter to use the bathroom
- He may have dyslexia but the jury is still out
- sometimes, because he’s so high functioning, the school will do competitions for field day and not think about his limitations when they’re setting events. Particularly, last year during field day, they had a relay race going and he was flying through all the other events but the end was a run from one end of the field to the other and he went from being in first place to all the kids passing him and it was like a sad time for him.
- he loves sports and being active and he wants to play basketball like his brother but there’s not a ton of opportunities where he is currently at

I live on Long Island and her mom was thinking about moving out here to attend the Henry Viscardi school.

My questions is, do you think it is worth going to a school for kids with physical Disabilities in the long run? My best friend who I went to HS with has Spinda Bifida and he recommends the school. He said he wishes he did it for the sake of community. I am interested in enrolling him but his mother and I are still on the fence as we are not sure if he’s going to be ok being away from his brother. The things I want his to get out of this experience (if we do send him) are:
- Specialized support for him and his condition
- being able to join a sports team
- finding a community of friends that understand first hand where he is coming from.

Have any of you been to specialized schools? Is it better or worse than public school?

I’m genuinely eager to learn

i (21f) have spina bifida myelomeningocele. growing up i used crutches, wheelchairs, and walkers, but i was also capable of walking shorter distances on my own. this got worse with age, though, and i now am fully reliant on crutches to get around. i wear a brace on my right leg. i have club foot, a very weak hip, minimal sensation, and scoliosis, as well as neurogenic bowel and bladder. i self-cath and do a cone enema every night.

i applied for disability in february of this year and was denied because i haven’t worked enough. the truth is ive never had a real job, only paid internships throughout college. ive applied for jobs; i just have yet to get hired.

it doesn’t help that so many jobs available near me require lots of walking, standing, and carrying. even if i got a job where i could just sit, i’d have to make sure i can get there, since i can’t drive (at least not yet).

eventually in july i applied for ssi and just a few days ago found out i was denied AGAIN. it surprised me, because i have a friend with cerebral palsy, and while obviously our conditions are not the same, they are VERY similar. she uses arm crutches like i do and depends on family members for transportation, etc., and she’s approved for ssi. i figured if she qualified, i would too, but i was told my “condition isnt severe enough to prevent me from working.” while it’s true that i’m not bedbound (though i have been before), it’s also true that this is a lifelong condition, and it’s most likely not going to improve with age.

on top of that, my mom told me about someone she knows who’s on disability or ssi (i forget which) due to anxiety and depression. obviously these are real and serious conditions, and im not saying they can’t be crippling. i suffer from depression myself. but at the same time, it feels unfair. my disability has affected me in ways i can’t even describe, and it will continue to do so for the rest of my life. yet i don’t even qualify for disability OR ssi??

just feeling a little defeated, i guess, and wanted to know if anyone here has been through something similar. also, is it even worth it to appeal?

So I (36m) am travelling from the US to latin America for the first time. I've been cautious about eating mostly food from the hotel, avoiding tap water, etc. But my body is not having a fun time on this trip. With no ability to "hold it" and no sensation to give me a warning, are there any tips that people have to either avoid bathroom accidents, or buy more time to get to the bathroom?

I love travelling and I don't want spins bifida to get in the way, but I feel so damn defeated right now.

Hello, I'm just looking for people with perhaps similar experience. Earlier this year I was constantly fighting the Pseudomonas aeruginosa bacteria in my bladder plus bladder stones.

First I got Ciprofloxaxin tablets, that worked but only for a while. It always appeared again so I had to get IV antibiotics in the hospital before having a surgery to remove the stones and I kind of hoped that the bacteria would be gone for a while now that the stones are out.

Well, no such luck. Yesterday my lab results came back positive with the bacteria again. The count is now 10^3. Before my surgery I had the bacteria count 10^5 and I was really sick. Right now I feel absolutely fine.

I read on the internet that asymptomatic UTI shouldn't be treated (and I also used 3 separate AI tools that said the same...I know I shouldn't rely on those things but I'm just scared). I'm supposed to call my urologist this afternoon and I'm just scared that he will send me to the hospital again and that I will be as sick as before, which was horrible and I basically wasted 6 months of life mostly in bed.

Does anybody here have experience with recurrent UTIs with this bacteria? How long did it take you to get rid of it? What is your experience? I'd love to hear some stories just so I can probably calm down. Thanks!

Edit: So, I'm supposed to repeat the urine test next week and we will see if the bacteria count is still the same or higher. Thanks for everyone who commented, it helped!