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Hi

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I had hydrocephalus but not need vp shunt Medicine cured hydrocephalus

Hello, im new to your Channel. I am a 47 year old woman with Spina Bifida. I find your videos very interesting and informative. Although i know almost all the info you have mentioned it is very good information for other that are not formiluar with Spina Bifida and all the other things that come with Spina Bifida. I noticed that you have not posted any videos in the last 3 years. Do you plan to make more videos because i would love to see more videos about you and your personal experience.

I grew up with a girl in the 70s who had SB and wore diapers all the time. She always smelled of urine. Wonder if the situation is better for people like her?

do you use an irrigator?

Thank you for the video was the pain like you can do more than this step than pain more that it get also more next days like swelling? I dont know if its from leak, Arachnoitis or TC for they want sirgery. Think about what for backpain it can be. The doctor say band to short and think clumped but it’s in usa not here europe. And don’t k ow if the pain i cant walk is from this🙈

thank you for your story 🫂

do you also had pain in back before surgery that you cant walk.

❤

do you have pain in stomach? thank you 🙏

Am a mother who has a daughter born with spinal bifida and really all the help and support I can get in this world she's fives years old and going in her first grade .

Thank you for sharing your story. You're helping many people.

👍👍👍👍👍👍👍👍👍👍👍👍👍 storytime I l like your storytime)

Increasable storytime on telling about your UTI storytime)

Play at 1.5x speed

I have Mild Communicating Hydrocephalus from minor head injury I'm 35 now and has Shunt surgery in 1997.

The exact same thing happened to me. I just spent the last 4 days in the hospital for sepsis and kidney infection caused by constipation and not drinking enough water. Most painful thing I’ve ever experienced.

Great to see people are sharing this kind of experience here, my nephew is also born with this. I will get much useful information from here which possibly makes his life much easier, god bless you 🙂

This is so close to home for me as my mother was the same age when she had me at 18/19 and she and my family never left my side because I was not expected to live being so premature with hydrocephalus you both such have a lovely bond which is so heartwarming 🤗🍀🙏🏻

So far in my life I have had 2shunt replacements after being diagnosed with hydrocephalus as a baby you are such a brave fighter and my mum would know the malfunctioning signs immediately and have me seen to asap as I’ve spent all my life with hospital stays and check ups best wishes to you stay strong I believe in you and the consultants and professionals are so brilliant these days god bless you brave lady 🤗🍀💪

I get uti with no symptoms I only find out during routine urine analysis. Dr put me on antibiotics he told me to drink water like you I don’t drink enough or any at all. My Doctor said the bacteria is so bad it could become septic. Now I’m drinking more water at least trying too.

Please help me my Spaina bifida and my overactive bladder

TERRIBLE STIGMA😐😐😐😐😐

😮wow

😮😮😮wow

Hi plz lhave the same case lhave aboy with the same case ldont know how to do is 10years buying dippers everyday am a loan nobody assisting me 🤭😭😭

Hey there

I have hydrocephalus and a shunt

Many doctors don't seem to want to do anything for over active bladder any more than they do for Spina Bifida Occulta. Did they have to do all kinds of urodynamic tests for you? I was reading where if the problem is obvious, they can skip this test.

people don't understand near me why some times they see me with crutches and some times in a mobility scooter. and even time i don't use any aids if im just going over the road. i push my pain to the limits of me if i need help i will ask and not until don't be afraid of asking for help just let people know that you know your limits and if u need help u mean u need help. good luck your so young and just learn to manage the pain and do not rely on the pain killers as much as doctor gives em to you dont forget your on these things for life. i am now 53 years old and been handling this for over 30 years good luck girl and good advice x

I've just got this diagnosis. Can you speak on the surgery for it? I know you haven't had the surgery but you may be able to give some information?

Girl...I think your soooo brave!!! Sincere, vulnerable, beautiful.....survivor! You remind me of someone in a survivors meeting....but her scars were on the inside!!! This was a meeting for the willing, not forced requirement!! We made a lot of advancements back then!!! Don't you EVER I MEAN EVER.... .Down play the value of your life.....no matter what!!! Hang tuff, pop tall, press forword & know you are beautiful!! God Bless you & your courage to post such a video! P S. I wouldn't be here either without the scars I have! Merry Christmas & have a Happy New Year!!!

Thanks you for sharing , my son have hydrocephalus and he's one now, I don't know how he feels or what to expect in the future,

Very beautiful 🤩

I'm Glad that I am not alone

I had sepsis last summer with a stage 4 pressure ulcer

Thank you for this channel. My baby has spina bifida.

I had/ have. Hydrocephalus and I have a VP shunt. I had to have revised 4 times. The doctors never said that I had problems with my spine. I'm just curious.

Great video! I also have spinabifida and I have to cath myself, it was overwhelming and frustrating at first, but eventually I got it! Keep up the great work! I wish there were more channels like this 💕

Just had a revision done last week. I'm in recovery but my neck is acting up. Fingers crossed hope it isn't a complication from the surgery.

I am 58 years old and was diagnosed with tethered cord syndrome about 11 years ago. Surgery was decided might make me more disabled or help me, kind of 50/50 chance. I just discovered your channel and listening to your pain symptoms was exactly what I go through everyday. I can still pull up and scoot a few steps, but the numb feeling and pain has made me use a wheelchair for the last 7 years mostly for everything. I look forward to watching all your videos. BTW, I started being incontinent about 5 years ago, I can sorta know when I have to pee sometimes, but not very well. Did your TCS affect you that way? If that is too personal, I'm sorry just ignore that question. You are the first person I have ever talked to that had same condition. I am sending you positive thoughts and wish the absolute best for you! I will message u again after I watch more of your videos. Stay safe, buy for now!

I was diagnosed with hypersomnia in I think 2016 from having a sleep study

I had the worst time with girls growing up but now as an adult I don't care. Guys always and still accept me and don't see my disability and wheelchair. Now when it comes to dating guys I can't seem to figure it or them out lol.

That's how I explained it when I was younger too

Can you share with me your yoga routine you were talking about in one of your videos, also I am in the same Facebook group as you if you could send me the link there. ❤

This is one thing that I am still trying to figure out. what works and continues to work, but it's like the second they finally start to be a little regulated my body will stop working with that medication. I rarely would go. Years ago I had my gallbladder removed and then a few years ago I had a bowel obstruction because of my stomach that barely digests my food, so I changed my diet and for a while at first it worked great now im back to figuring out what to try next because surgery is the very last thing I will do. Also since my gallbladder removal if I take my laxative more than a few times a week I have issues with not being able to stop going. I just try to drink lots of lemon water and eat more of my plant based foods.

I have been on 5mg of oxybutynin twice a day but can take it up to 3 times a day my whole life. What has worked best for me for the past few years is botox injections in my bladder.

❤

I love your story, I also have Spina Bifida, Myelomeningocele, L5S1, and am super interested in sharing my story (through motivational speaking and also through the autobiography that I am in the beginning stages of writing!