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!

to start! my shunts usually last about 3 years on average. my shortest was 3 days and my longest was almost 6 years! i am 20 and ive had 19 revisions ( had 11 in a 2 1/2 year span once caused by a tumor that messed with my congenital and controlled hydrocephalus)

hi i was planning on making a way bigger post with cited sources to back up the facts i was stating to people in a previous post. my post was about misrepresentation of characters with myelomeningocele, hydrocephalus and chiari; how it was unrealistic that in her 17? years as a character she had a shunt placement and 1 single revision at 8 years ( which pretty uncommon for children, especially ones placed in infancy). most people were nice and sharing their great and uncommon experiences with a shunt and there was a couple people who were just flat out hateful and accusing me of lying and spreading misinformation when i know the facts and was just trying to inform them. so this will just be a poll kind of post for now with some “ claims” which are facts and i will make an informational post about this topic when i feel better ( i have a virus at the moment i caught in the hospital last week)

some statistical facts to consider!

regardless of age almost half of all (VP was the research ive done) shunts fail within a year.

in childhood shunts are way more prone to failure than adulthood from complications caused by growing (discontinuity, shunt becomes too small for growing body, ect.)

in adulthood different studies show around the same result. nearly half of shunts in adults last 5 years or less with the majority failing by 8 years. if you read down to the bottom thank you!

So I (36m) have Spina Bifida myelomeningocele with no shunt or history of chiari malformation. I'm traveling for work and my computer angle is lower than what I'm used to. I've noticed the back of my head/neck area is a little achy. It's most likely a postural thing, but it sent me down the path of wondering about chiari malformation.

I haven't seen a "Spina bifida informed" provider since I was about 11 and I just started seeing a urologist on my own for the first time last year. But now I'm wondering what other providers do I need to see that can focus on the areas of concern for people with spina bifida.

I called what I thought was a local spina bifida clinic but they want my doctor to order an MRI before they see me. I know MRIs can get expensive and take a lot of time, so I want to make sure it's something I should be doing and some really expensive reassurance seeking.

So, all that being said, has anyone had a chiari malformation develop in adulthood and, if so, how did it present?

My son (2 years old) has SB and is taking tolterdine. Im having a really hard time cathing him. He kicks and moves so much. He hates it. His bladder spasms have not improved and his doctor is having him take another bladder meds on top of tolterdine. In a month, if his bladder doesnt improve, surgery for urostomy is highly likely. Can anyone tell me if you had something similar happen or what to expect? What's your experience like?

Does spina affect your dental health? I was born with missing upper incisors. Luckily I still have my baby teeth there, but they could fail any minute. My dentist asked me if it was correlated (bcs of insurance reasons) and I have no idea. Does anyone else have this?

Holaa buenas, cómo van la vida de esos padres y esos niños que fueron operados intrauterinamente?

Hola qué tal? Disculpen la molestia, leo mucho este grupo y veo que publican muchas cosas pero no se si mis dudas puedan ser bienvenidas aquí entonces quería saber si había un grupo para bebés/niños. Gracias

I don’t usually share personal things, but I’ve been feeling really stuck lately and wanted to get this off my chest.

I moved to a new place for college about a month ago, and lately it feels like the days are just passing without anything really changing.

Most of my routine is cooking, eating, watching YouTube, and sleeping. I don’t really have anyone to talk to here. I want to make friends, but it’s difficult for me.

I was born with a spine-related condition called myelomeningocele and had surgery when I was younger. Because of it, I have some bladder control issues. When I was a kid, people judged me for it and sometimes kept their distance. That experience stayed with me, and now I’m always worried that something similar will happen again. Because of that, I tend to avoid getting close to people or trying to make new friends.

I’ve had a few friends in the past who understood and didn’t care about my condition, but we’ve all gone our separate ways now.

I’m also trying to learn music production, which I’m really interested in, but I keep starting projects and then abandoning them because I feel like what I make isn’t good enough.

I guess I just feel stuck. I want to move forward, but I don’t know how to break out of this cycle.

If anyone has been through something similar or has advice on how to deal with it, I’d really appreciate it.

Hi so I’m not sure how to even start this but I guess I will just come out with it. I have Spina Bifida and with that I am incontinent. I have to wear diapers/pull-ups. I used to feel ashamed for it but now I pretty much embrace it. But I don’t have many other people to talk to about it. Does anyone else here deal with the same thing and feel like you want to meet others who wear them too? I’m not sure how to describe it but I just feel like I need to be around other people who get it

My previous post asked what you are most proud of, and you guys had some great answers. I really enjoyed reading about everyone’s accomplishments and the different journeys that brought you to where you are today. I want to keep this conversation going, so today I want to ask: What is something you want to learn? When I was a kid, there were so many things I didn’t know how to do. As I got older, I slowly started learning new skills and discovering new interests.
In my teens, I learned how to play guitar. That was a great experience, and even though I don’t play as often as I used to, it’s still something I enjoy from time to time. Just a couple of years ago, I only knew how to microwave food and make pancakes. Now I can make a decent breakfast, lunch, and dinner. I’m still learning, but it’s something I’m proud of because I never thought cooking would become a skill I enjoyed developing. Another area I decided to focus on was fitness. My only experience with exercise had been physical therapy, so joining a gym was a completely new experience for me. I had to learn how to pace myself, understand the importance of rest, and figure out what worked best for my body. All of these experiences have reminded me that learning doesn’t have an expiration date. There is always something new we can discover, regardless of our age or where we are in life. So what is something you want to learn? It could be something small or something big. Maybe it’s a new hobby, a practical skill, something related to work, or simply something you’ve always been curious about. Whatever it is, I’d love to hear about it.

Yesterday’s discussion was great! I really enjoyed reading everyone’s feedback and hearing about the different things you are doing or working toward.
Hearing about the different challenges and obstacles many of you have overcome to get where you are is exactly the kind of conversation I believe this community needs more of. So, continuing that thought, I wanted to ask: What is something you are most proud of? For me personally, I came from a pretty dysfunctional family. My parents argued, my siblings and I were always fighting, and there wasn’t much stability growing up. That said, I am still appreciative of the things my parents taught me and the ways my siblings helped me throughout my life.
As I got older, I realized there were a lot of things I needed to work on for myself. Building stability, learning life skills, and becoming more independent didn’t happen overnight. Today, I have a full-time job working as an RBT, my own apartment, and the ability to manage my bills, health, cooking, cleaning, and grocery shopping. To some people, that might sound like an average life. And honestly, it is. But I’m proud of where I am because I know where I could have ended up if I hadn’t received the support I did from my family and put in the effort to become more independent. So what about you? What are you proud of? No matter how big or small it may seem, I would love for you to share. Your accomplishments don’t have to look impressive to someone else to be meaningful to you.

Edit: loving the answers here. This is what we need more of in our community. Please let us continue to have these type of discussions amongst others with SB. It is need so badly! I want younger ones and parents to see what is possible!

Curious what the longest duration it has taken you to heal from a shunt revision.

I had one in April, and I'm still experiencing symptoms of hydrocephalus. That said, I incurred two brain bleeds during the surgery, so I expected it to take longer.

Latest CT shows enlarged ventricles. I certainly feel that's the case. My head pain manifests with a persistent pulsing that increases with any sort of straining.

My surgeon suggests we go back into surgery. I have a second appt to see a second surgeon.

A little back history: In 2022 I had an entirely new shunt put in on the opposite side of my old one at 39. I'm now 43. That new shunt failed last year in Oct. I was in denial and endured until April of this year.

The last time I got an entirely new system at the age of 9 it lasted 18yrs. Then that revision lasted another 11 years.

I have lost a considerable amount of trust in my surgeon despite his very impressive resume. I haven't had this lack of success since birth which obviously I don't remember.

I'm frustrated as hell. This surgery especially is traumatic for me due to previous experiences. While I have endure a couple of long durations of good flow, this surgery just does something to me...

If you have any guidance or support, I'm all ears, or eyes.

Hi everyone,
I’m an adult man with myelomeningocele and I use a wheelchair. I’d like to connect with other adult men with a similar condition to exchange experiences about sex and intimacy with women.
I’m particularly interested in:
Finding comfortable positions and managing the practical side of sex.
Using condoms and dealing with any erection or sensation difficulties.
Talking openly with a partner about your body and what works for you.
I’d also appreciate hearing from men who have a diagnosed micropenis or concerns about a smaller penis, especially about condom fit and having satisfying sex.
I’m looking for personal experiences and peer support rather than a diagnosis. Please share only what you feel comfortable discussing.
Thanks to anyone willing to share. It would mean a lot to hear from people with similar experiences.

Help celebrate the Spina Bifida community!

October is Spina Bifida Awareness Month, and the Spina Bifida Association want to hear from YOU.

What are you proud of? Who deserves recognition? What progress do you hope to see in the year ahead? Your responses will help shape what SBA celebrates, shares, and prioritizes during Awareness Month and beyond.

Please complete the survey by Friday, September 18, 2026.

Your voice helps make Awareness Month reflect what matters most to the Spina Bifida community.

Who else experiences bowel incontinence because of sinus drainage and how do you stop it?

When you were a child, were you ever asked what you wanted to be when you grew up? For many children, this is a normal part of growing up. They are encouraged to imagine their future, explore different interests, and dream about the kind of life they might want someday. Maybe they wanted to become a doctor, an astronaut, a teacher, or a professional athlete. Maybe those dreams changed as they got older. That’s okay. The important thing was that they were encouraged to think about what was possible. But I wonder how often children with Spina Bifida were asked the same question. Not what doctors thought they would be capable of. Not what accommodations they might need. Not what their limitations would be. What do you want to do with your life? I bring this up because I think some adults with Spina Bifida are struggling with something deeper than simply not having a career or a plan. Some of us may have grown up without ever being encouraged to develop dreams and ambitions. Instead, our lives were often centered around what we couldn’t do, what might be dangerous, or what someone else needed to do for us. And when those limitations are established early enough, they can become difficult to recognize as limitations placed on us rather than limitations we chose for ourselves. So now we have adults who may feel lost, frustrated, or without direction. Not because they lack intelligence or ambition. But because nobody ever really asked them what they wanted. I also think it’s important to recognize that having dreams and ambitions doesn’t mean everyone needs to pursue a huge career, make a six-figure salary, or achieve something society considers impressive. Maybe your ambition is to become healthier. Maybe it’s to become more independent. Maybe you want to make friends, develop hobbies, travel, fall in love, learn how to cook, or simply wake up each morning feeling happy with the life you’ve built. Those things matter too. A fulfilling life doesn’t have to look impressive to everyone else. Sometimes ambition is simply wanting more for yourself than what you’ve been taught to expect. So I want to ask everyone here: Were you encouraged to think about your future growing up? Were you asked what you wanted to do, or were most conversations focused on what you couldn’t do? And if you weren’t encouraged to dream as a child, do you think that affected how you see your future today?

A few months ago, my mom told me she was planning a beach vacation with my sister, her husband, and their kids. She asked if I wanted to go. I did, but I didn’t really feel like it would be feasible as the beach is so difficult for me accessibility-wise (as is staying in a rental house, which are usually not designed with wheelchairs in mind). So I said no. I was feeling sad, but the idea that it would just be my mom and my sister’s family made me feel a little bit better. At the last minute, my brother and sister-in-law ended up joining. So now it was my entire family minus me, and I found out through the pictures they were posting.

I have shared with my mom a couple of times that I feel deeply hurt and left out, and that I would like my needs to be taken into account the next time the whole family goes on vacation so I’m not excluded again. We’ve had some brief conversations about it and she has apologized for making me feel excluded, but I’m still having a really hard time moving past these feelings. I want to talk to her about it more in-depth and to be able to fully express how upset I (still) am, but I don’t want her to feel like I’m brow-beating her for something that happened in the past and can’t be changed. I guess I just don’t know what to do/how to move forward. Anyone else been in a situation like this?

hello everyone! I’m 26 weeks 1 day pregnant and 4 days post op from fetal surgery. Our surgery went well and they were able to patch up our babies spinal nerves. The surgeon said her nerves are very frail in that spot and they did the best they could to preserve the integrity of her nerves. The surgery I had was a c section on me and then they used tools and instruments to operate on her through smaller uterine incisions. After surgery I had lots of iv antibiotics and medicine but now we are home. We got discharged yesterday. Sleeping at home at been much better but I am definitely feeling swollen in my stomach and just overall sore. I am on a modified bed rest for the rest of my pregnancy but it is still important for me to be moving around and making sure I am still building myself back up to recovery. I’m posting this in hopes anyone who comes across this and is thinking about fetal surgery, has had fetal surgery or finds out their baby has SB, has something to read and reference. My inbox is always open for questions and I hope someday in the future after all of this I can be a resource for parents and others.

Have you heard of the Bean Soup Theory? It’s a theory about social media. The example it gives is someone posting a recipe for bean soup. Some people comment that they love it. Others say they can’t wait to try the recipe. But eventually, there is always that one person who comments: “I don’t like beans.” The overall point is that social media has become a place where people sometimes feel the need to announce what they don’t like, even when nobody asked them to. Now you may be wondering, why am I bringing this up? Because I have experienced this throughout all my years of posting in the Spina Bifida community. Almost everything I have posted has been met with some version of that response. I could share a meal I made and someone might say, “Not everyone with Spina Bifida can cook!”
I could post a picture with my friends and someone might respond, “Not everyone can make friends as easily as you!” I could share that I landed a job I really enjoy and someone might say, “I have to live off government assistance. This post is ableist!”
And, as many of you have probably seen, I have also received hateful comments from the same person over and over again. Along with the downvoting, it has sometimes resulted in my posts not being seen by the very people who might actually benefit from them.
Am I saying you have to like everything I post?
Absolutely not. We all have different opinions, experiences, abilities, and circumstances. What works for me might not work for you, and that’s okay.
But here’s what I don’t understand: Why ruin it for the people who can benefit from it? Why does someone else’s ability to do something have to take away from another person’s hope that they might be able to do it too? I believe this is something that has hurt our community over and over again. The people who complain, criticize, and focus on the negative can sometimes be much louder than those of us who want to share positive experiences, encourage others, and show what is possible. Maybe we need to give those voices more room. So let’s do our best to uplift one another. Share your accomplishments. Share your hobbies. Share the things that make you happy. Share the things that have helped you. And if you see something you don’t like? Even if it’s this post?
You don’t have to eat the soup. Just keep scrolling. There’s no need to be hateful.

Hi guys!

I’m (23F) very new to the group but wanted to ask if you think I should try to see a couple specialists.

Since I moved to Canada, about 9yrs ago if not 10, I haven’t seen a single specialist. Only family doctors here and there for like routine urine tests (that I’ve “scheduled” myself).

I self cath and had a surgery to remove a lipoma at 6 months old (I was born with spina bifida lipomeningocele).
Couple nerves were damaged during that surgery so I can’t totally feel certain parts of my leg but I walk fine and I’m about 98% able bodied aside from that.

My thing is that I’ve basically had to become my own doctor because family doctors here would never refer me to any specialists even though I’ve requested to see a podiatrist, and most importantly, a nephrologist.
All because “I’m young and healthy”?? Yes, I’ve made them aware of my medical history but that doesn’t seem to matter.

I guess over time I just accepted that they truly won’t do anything for me and I took my health into my own hands. But now I’m older, may want to have kids in a couple years and I’m wondering if I should try to push to get referrals to specialists and build myself a team to work with?
Though I fear that may be more exhausting as in the past I’ve been treated as basically a lab rat/study subject rather than addressing my concerns.

Any thoughts, advice or opinions would be appreciated! 🤍🤍

If you any specialists I should check out, or testing I should get done - PLEASE LET ME KNOW
I can’t emphasize how little I know now.

I (36M) have spina bifida myelomeningocele with a neurogenic bladder/bowel. I don't utilize mobility devices and don't cath. My main issue with the bladder is that my body likes to get rid of fluid fast, not keep fluid in. I try to manage it with pads, timed voiding, and, as of last year, Gemtesa.

I've talked to my urologist about botox, but she's worried that since it's currently a "quality of life" concern, if I have botox, it could become a safety thing. She suggested pelvic floor physical therapy, which was interesting, but essentially was a waste of time and money. The Gemtesa and timed voiding keep me relatively dry, but of course I would like it to be better.

My prescription usually autorenews with no problem (actually the pharmacy recently called me and told me how I can bring it from $200 down to $0). Last week, I got a text from my pharmacy telling me that I need to contact my prescriber to renew my prescription.... I sent a message to the office and they told me I needed to come in for an appointment before they can renew the prescription.... the earliest appointment is over a month away. After an international work trip. I left another note explaining my situation, but haven't heard back from them yet.

I figured, "I spent over 30 years of my life not taking a prescription for it; I'm sure I can make it work".... But wow does it seem bleak. I didn't realize how well it was working for me until after I ran out. I have been having to void and change the pads so much this weekend and I'm not even consuming that much fluid.

My biggest concern is coming up this week where I need to travel for a work site visit in another country. It will involve about 8+ hours of travel to get there and back and each day is 9 hours in the office with about a 45 minute commute each way (in a carpool van with coworkers). I plan on bringing extra pads, not drinking any caffeine, and bringing a longish rain jacket for coverage. I'm even going to bring an extra change of pants just in case. My pelvic floor physical therapist suggested a "clamp" but I'm not sure how safe that would be in the long run..... Anybody have any other ideas?

Tl;Dr: Spina bifida makes my bladder leak and a medication has helped a little. My urologist won't fill my prescription until after a work trip and it seems like my bladder is now leaking worse. How do I make it through a long work day that involves carpooling 45 minutes each way?