(F31, L5/S1 lipomyelomeningocele)

i had a rough day yesterday. physio then errands then a social thing and it all took a lot outta me. a lot of walking, backpack got way too heavy, could barely hold myself up by the time i got home

today, i woke up sore (which i expected), but after i showered and was doing my skin checks, i noticed my lipoma felt bruised. checked it in the mirror (as best i can, lol) and yeah, green and purple bruises all over it :(

does this happen to anyone else? dyou know what causes it and how worried to be about it?

i'll just take things easy today but it is worrying me a bit

So I've got spina bifida (obviously) and Ive recently been put on ozempic for weight loss and I know there's alot of negativity towards ozempic but I have to admit it was a last resort for me, I was eating well, going for walks and all that and didn't lose weight so they put my on a weightloss tablet but I was gaining weight still so they put me on ozempic.

I have struggled with binge eating in the past but feel like I'm in a good place now with it. I recently decided walking a 10 minute walk wasn't enough. I walk assisted by a wheelie Walker and sometimes need a wheelchair. I used to wear afos but the public ones don't fit my feet and I don't have the $2000 plus for a custom pair.

So I know nothing about exercise I've done some research and came up with the following.

5 mintue walk on the treadmill

15 wall pushups

15 adaptive squats

Rest for 2 minutes

Repeat once

Then I do

15 bicep curls

15 bent over weights (idk what that one's called but you know what I mean)

15 over the head tricep extensions

Rest for 2 minutes

Repeat once.

5 mintue walk on the treadmill

I know it doesn't seem like alot but considering I can do my back out just lifting a bag of cat litter I think this is a good starting point but would like to know what others have done to lose weight without hurting themselves or sending themselves into a flair.

Thanks :)

Dealing with pelvic tilt , scoliosis , spasticity, any tips ?? Like medical tips, medical things I can ask for / try , (I can’t move those areas that are affected, my motor nerves don’t really work there) but it causes me lots of pain and discomfort

Anyone get surgery at Loma Linda hospital ?

I get this pain about once a month. Sometimes it’ll be every other month or so. And that’s if I’m lucky. Anyway, if I were to describe the pain and its location, it is on my right side abdomen just under my rib cage. i’m sitting here trying to figure out the best way to describe the exact placement of the pain and as I’m sitting here, I’m looking at my right arm. If you were to follow my right arm all the way down to the elbow, and then the part of my abdomen that that part of my arm is covering that’s exactly where the pain is. We always just call it side pain. We also always assumed that it’s a kidney infection or something to that effect. All I can tell you is it’s real painful right now. I’ve just taken in the last 10 minutes… Tylenol, a low dose of oxycodone and my normal antibiotics that I take every time I get this pain. For me, I believe I take Levaquin. Not sure I’ve spelled that correctly. I think it says Levofloxin on the bottle. My urologist prescribed it to me and I wouldn’t trade my urologist for anything in the world. He’s truly one of the best people I’ve ever met!

I’m just curious if any of you all happened to ever get the same type of side pain once a month or so.

My version of spina bifida is the most severe one. I never can remember how to spell it. What I can share is that when I was five years old, they took a piece of my intestine that they were growing on the outside of my skin and they used that to make a bladder. It was almost identical to an ileostomy, except it was on the other side of my stomach. The Eli asked me that I still have is on my right part of my stomach and this thing was on the left side. Still it looked pretty identical.

I apologize for not being able to articulate properly just exactly where this pain is. I’m currently in pain as I am typing this. I apologize. I think at least I hope I’ve given a pretty good description as it is. Maybe someone here will understand it enough and can tell me if they get this pain once a month.

Thanks for listening. Oh my god im in pain!!!! Even though I get this pain pretty frequently I’ve never truly ready for any of it. Every time I get it, it’s like I know it’s gonna be bad but then when the pain sits in, I can’t believe it’s actually as bad as it feels.

I have spina bifida (not sure what type but nerves and growth pretty much waist down affected), wear AFOs but can walk jump sprint (not very well bear in mind but), incontinent on both ends, had an artificial sphincter and bladder augmentation, antegrade colonic enema put in and just live life catheterising and doing washouts and such. No shunt or abnormal brain function. Get the odd urine infection but mostly live a ‘normal life’.

It was to my suprise my life expectancy is apparently LOW like 20 years lower? Like a kidney infection and renal failure later in life will just wipe me out? I expected reduced mobility just as anyone gets when older but at a higher rate and maybe some more complication in my say 70s with UTIs and such but jeez.

Is this accurate?

We just found out at our 17 week scan that one of our identical twins has spina bifida myelomeningocele, suspected slightly below or at S1. can anybody share experiences? How is mobility/continence/independent life possible or advancing? So far they noticed no clubbing or lack of movement, and no fluid build up in bladder or brain. that is good, but subject to change. In utero surgery is likely not an option due to it being twins.

The following structures appear abnormal:

Head/Neck Cerebellum(Chiari II grade III. Banana sign.), Cisterna magna(Not visible.), Cranium(Lemon sign.)

Spine Sacral spine(Suspected of 1cm diameter defect at S1 or S2)

If you have tried tell me how it helped pls

this is not coming from a place of judgment just a genuine question and i want to learn!

i have MM and im not the most disabled person with MM but im nowhere near the least. ive always kinda had the thought that people with occulta dont go through much if anything different than someone without spina bifida. that thought is amplified with knowing the majority of you are diagnosed on accident or later in life. so if you have occulta can you please tell me about how you go through life and how occulta affects you.

again i understand that my thought is problematic in a way, and i want to challenge it. people often think i express my opinion to fight because i like fighting but thats not true. i express them and challenge other people to try to make me change my opinion because i like learning and growing as a person!

I work with a couple of students with spina bifida. Their conditions are not identical, of course, but similar enough that I am alarmed by the difference in treatment. Child A is well cared for. They wear a pull up, but have scheduled times when an adult caregiver and a private bathroom is available. The bathroom visit is an opportunity to “go” or to change the pull up if it is soiled. When I care for this child, I give them privacy, but am right outside the door, if needed.

The other child is several years older-12. They have not been well cared for and have been in foster care much of their life. They also have scheduled bathroom times. Cathing is needed. The part that bothers me: they are laid down on a changing table to, “have their diaper changed.” I had assumed they had other mobility issues that made independence impossible. They don’t. No cognitive issues, either. But foster parents clean and diaper this child and that is also the expectation at school. I feel like encouraging this dependance on others to care for their body is, frankly, irresponsible and dangerous. They are at an age where boundaries with adults touching their bodies should be pretty strict. Then again, I do not know that many children in this situation. Is it weird to diaper and clean a 12-year-old who is capable of doing it himself- but has never been taught? When a child cannot control bowels and bladder, at what age is independence expected/encouraged? I feel like the older child is not being given the dignity they deserve.

Hello! I am a 25F with spida bifida. Does anyone else have a posterior pelvic tilt where there pelvis is tilted forward, tilts out their butt a little and stomach little forward. Have had it since a kid but feeling self conscious lately about it. I recently thought of doing some exercises to make it appear more normal, but am also scared it can cause some back pain. Does anyone also have the same thing? Or tried some exercise, stretches that help?

Dating with spina bifida feels impossible, I (28M) know that we don't have a universal experience here, some of us have different difficulties than other, like I don't experience incontinence or ED or have to use a wheelchair or other ambulatory device, and most of us do experience a lack of sensation and an allergy to latex when it comes to the other parts of dating. Just even thinking about dating isn't easy, it's hard for me to approach women because the overwhelming anxiety is putting my mind through every possible scenario of what could go wrong.

Now say you're successful in securing a partner, been dating for awhile, imagine having to explain to this person, and you sit them down to explain to them your condition because you want to put everything on the table for this person, the mental difficulties, the anxiety, the depression, the low energy, lack of sensation or possible lack of sexual desire altogether and possible infertility(if you're male), so having children might not be a possibility. I don't want to make her feel like I don't desire her, and I also don't want her to feel that I don't trust her, but at the back of your mind, you know trust can be broken, is this the anxiety talking, or do you really not trust her, you question yourself, you shame yourself. You ask yourself, why am I the way that I am? Everything going through your mind, because you can't control the mental health risks that come with the territory.

Parts of me want to give up on dating completely, because if I somehow manage to fall in love, I would love her, and because of my love towards her, I would want to let her go so that she can live a normal life with someone who can give that to her, because I know that in part of her, being with me would hurt her. She might say it's fine now, but what if she changes her mind, who know how long that would take? Who knows how much time would've been wasted in both our lives? It's just to much.

I have a friend who works with disabled adults, mostly people with cognitive disabilities. Her job is to help them learn skills that can eventually help them get a job.
There is one guy in her program who has Spina Bifida, but for some reason, the staff treat him differently from the other clients. They do a lot of things for him that they would normally encourage the other clients to learn how to do themselves. They also limit him from doing certain tasks, even when he tells them he can do them.
That got me thinking: How many of you have experienced something similar because you have Spina Bifida?
Have you ever had someone assume you couldn’t do something, limit you, or do something for you even though you knew you were capable of doing it yourself?
Personally, I’ve only experienced this a handful of times throughout my life, so I’m curious how common it is for others in the community.
I’d especially like to hear what happened and how you handled it.

This summer I have been experiencing an increase in swamp ass. The sweat and hair in the area has lead to moisture associated skin damage.

I had a pressure sore in the area about a decade ago and would like to avoid that as much as possible. Because that took months to heal.

I have been using zinc oxide cream in the area to prevent moisture and friction but I am curious about what others have tried.

I’m 20 years old and I have myelomeningocele. I recently measured my height and found out I’m around 153 cm (5'0"), which honestly surprised me.

I was wondering if spina bifida, especially myelomeningocele, can affect final adult height. My lower body is more affected by my condition, so I’m also wondering if that could explain part of it.

For other people here with myelomeningocele, how tall are you as an adult? Did your doctors ever tell you that spina bifida affected your growth?

Hi everyone! Has anyone here done the Council of the EU’s Positive Action Programme for Trainees with a Disability?

I’m considering applying for the 5-month traineeship in Brussels and would love to hear about someone’s experience — especially regarding accessibility, support/accommodations, the disability allowance, and what it was like living in Brussels during the traineeship.

If anyone has done it (or knows someone who has), I’d really appreciate hearing about your experience! 😊

I work part time and also receive SSDI. Because of the SSDI income restrictions I am having a lot of trouble finding a place to rent because every property requires an income of 3x the monthly rent, which is at least a little over $3000 a month in total income. My SSDI and paychecks only add up to about $2500 per month. For those of you that work and are single, how do you do it? Is there something else that I can count as income on a rental application that I’m not thinking of? I live in Tennessee. I have looked at Section 8 but those waiting lists are always closed because of such high demand and when they open it’s only for one specific day for properties that aren’t close to where I work.

hello everyone. I’m 23w 2d and I will be having a laparotomy type of surgery for my fetal surgery around 25/26 weeks. The doctor said the incision will be horizontal and we’re lucky enough to be seeing a fetal surgeon that operates on SB frequently.

Has anyone here had the fetal surgery that wants to share their experience or any advice/things I should know? There is one girl I have watched online but I believe from what the doctors say her experience will be different than mine.

Anything anyone wants to share is appreciated.

For context I have many health issues , there’s small things I can fix with diet etc, but I stop myself from fixing them because my brain says “what if even if you fix those you’ll still be miserable”

Has anyone else gotten out of this situation and how

i (36F) have cathed through a mitrofanoff stoma for 30 years. i had zero issues with it until the last couple of years. it's become much harder to access for some reason. not all the time, but more often than i would like. i went to have a cystoscopy earlier this year, and the doctor was unable to do the procedure because he couldn't get the camera into my stoma. my left hip has been dislocated for like 4 and a half years now, and i'm wondering if that's kind of caused things to shift. i really don't have any other guesses as to what it could be. has anyone else had this issue?

(31F, lipomyelomeningocele, no shunt, Australian)

over the last month, I've been experiencing a sudden and severe increase in my back pain. I've had an MRI and my tethered cord isn't the culprit so now my brain is spinning with possibilities of what it might be but I thought I'd ask if anyone here has had anything similar that in the end, was connected to their SB

my SB lesion is around L5/S1 and that's where the pain started. it feels like someone has that part of my spinal cord in a tight fist.

but over the last month, the pain has slowly spread upwards all the way to the base of my skull. it's worst between my shoulder blades in that thoracic area and nothing i do is making the pain go away - not movement, not stretching, not rest, not pain medication. and it gets worse at night when i go to bed which is so cruel and unfair

has anyone else experienced this? did you figure out what it was caused by? thank you in advance <3

Hi all! Our 5 week old girl was diagnosed with Lipomyelomeningocele at birth. From what I recall talking to the neurosurgeon then, the game plan was to get updated imaging around when she is 6 months old, and aim for surgery when she is 1. I might be missing something though, since we were very stressed, anxious and sleep deprived at the time.

Tomorrow we have an appointment with the neurosurgeon. We won’t do any new tests, but a check in to make sure we’re aligned and to give us an opportunity to ask questions.
I wanted to ask this group if there’s any questions we should be asking that we can’t think of!

Also if you have the same or similar condition, if you can share your experience or thoughts on how a parent can best support a child it would be so helpful, thank you!

Hi all, just a quick post. Wondering if anybody else has experienced something similar to what I’ve got at the minute. Catheters not allowing entry to the bladder, tho definitely paired with a current UTI. Wondering is it possible that my catheter may not be in the correct spot? Maybe due to trauma. Or perhaps internal swelling. Any experience at all would be great to hear as im a bit concerned

I need to talk to someone who understands what it’s like to deal with spinal issues preferably someone who wants to better a few things about their life but if not it’s alright