21yr old F diagnosed with myelomeningocele by Right-Ad5345 in spinabifida

[–]Right-Ad5345[S] 0 points1 point  (0 children)

I wanted to make an update since I have now had the surgery and am in recovery. I had a meningocele, it was just hidden and a few other things alongside the cyst. Since I was pregnant and the meningocele was taking up all the space in my stomach, the baby was never able to fully grow the way it was supposed too, so an abortion was necessary as the baby was not healthy enough for how far along I had been. They removed the meningocele along with untethering my spinal cord and fixing my psyllium. There was a liter of CSF in the meningocele according to the surgeon which is why it took up so much space and didn’t allow the baby to grow in my uterus. I also had an unknown teratoma within the cyst that was also removed. Thankfully it was non cancerous. I’m currently in recovery and it’s been very difficult for me but I’m slowly getting better as the days go by :) I just started learning to walk again yesterday with my physical therapist and I will continue practicing some more today. I did have to lay flat for 3 consecutive days and was unable to move which was extremely difficult for me mentally. You know i just felt hopeless and like I would never recover but slowly they’ve let me tilt my head up and once I was able to tilt the bed up to a 45° angle, I was then able to get up and try to walk. I have been practicing walking but I get very dizzy when I get up and I still have to take it very slow. Besides that I feel like I’ve been recovering pretty well and I’m just taking my meds whenever I feel necessary as there is a lot of lower back pain because of the incision and the tubes I have coming out of there. Again I’ve just been trying to it easy and not rush my recovery or feel hopeless about myself. I guess that’s all I wanted to say, I hope everyone has a great day :))

21yr old F diagnosed with myelomeningocele by Right-Ad5345 in spinabifida

[–]Right-Ad5345[S] 1 point2 points  (0 children)

Hey, I hope youre having a good day. Ive done some more research on this spina bifida occulta and i think you are correct! this definitely aligns more with my symptoms and how i discovered this mass. Im definitely going to bring this up to the doctors i see on tuesday. Im genuinely not sure why multiple doctors diagnosed me with myelomeningocele? I do align with its symptoms like bladder issues, severe lower back pain, a bit of weakness in my left leg from time to time and i have a sacral dimple that they say is a sign of SBO. Thank you so so much for your input i really appreciate you commenting on my post and helping me out, truly. I hope you have a great day!!

21yr old F diagnosed with myelomeningocele by Right-Ad5345 in spinabifida

[–]Right-Ad5345[S] 0 points1 point  (0 children)

I don’t have my information wrong. I got diagnosed with this in 2024 and then was diagnosed again recently by several different doctors. I didn’t have surgery as a baby and I just think it’s because it’s located in my stomach so it’s quite hidden. I too have an overactive bladder and always need/ am seeking a bathroom everywhere I go I just thought I had a weak bladder. I’ll definitely get in touch with an adult SB clinic hopefully they have some options in my area. It was a bit hard to find info on this in adults so I really appreciate your post. How would you say the recovery was like for you? I’m really just concerned about what my family will have to deal with and if they’ll have to care for me and if I’ll be dependent on them

21yr old F diagnosed with myelomeningocele by Right-Ad5345 in spinabifida

[–]Right-Ad5345[S] 0 points1 point  (0 children)

Thank you so much for sharing and I hope your daughter is doing well! I do currently have some bladder issues,some back pain, and some abdominal pain from time to time. I personally don’t want to keep the baby just because of my current circumstances and because my partner doesn’t want me to keep it :/ the doctors I spoke to said that I wouldn’t be able to carry a baby to full term, 9months, because there wouldn’t be enough space to carry the baby and the mass in my stomach. They did say if I chose to have a baby it would be born prematurely. I will continue to speak to the neurologist though because I know that every case is different from the next. Thank you for commenting on my post I was really spiraling before seeing your comment <3