Newbie

[docshoney]

Hey All,
Well I just typed a big long intoduction and lost it :). So I guess I will make this one short.

I am a new mother to boy/girl twins they are almostg 3 months old. My daughter has myelocystocele. I have to admit I can not find too much information about it and haven't tried to hard because I am scared. The doctors at children's hospital seem to have a very positive attitude and are hopeful for a good outcome. I am trying to look at it the same way. My daughter is a beautiful funny active little girl. The nuerodevelopment specialist says she is doing everything a normal baby would be doing and to treat her that way, which is what we are doing. I am having a very hard time with the what ifs though. We will have more testing and she will have surgery in Dec. and I am living in anticipation of that time. Can anyone pass on any infromation they might have? I am also interested in surgery recovery time, I am sure it is variable, but for some reason it really is weighing on my mind. How long could she be in the hospital?

Thank you all so much for taking the time to read this and respond.

[ollieholmes]

Im sure some of the others would be able to help more with the medical side of the questions but i just wanted to say welcome and feel free to ask as many questions as you want.

[angel]

Hi,

Welcome to the group. I am 31 years old with Spina Bifida Myleomeningocele (after all these years i still can't spell it lol) and i have an 11 year old son with spina bifida occulta. I found with myself and my son the younger you are the quicker you seem to recover. My son had his spinal cord release surgery when he was 2 years old. The doctors told me he might take 2 weeks go start walking again. It took him 4 DAYS!!! after that 4th day you couldn't catch up with him. It was like nothing ever happened!! He had his spinal fusion about a year and a half ago. I had this done when i was a little kid and i remembered it seemed to take me forever to get going again, of course it was at a different location on the spine, and time passes a lot slower when you are 8 years old. With my son he was in the hospital for a week. He came home and after 3 days decided he didn't hurt bad enough for his pain meds and a week later he wanted to go back to school and about his normal life. I made him wait 2 weeks to make sure he had time to heal a little more. Kids are able to bounce back quickly. Another positive you should look at is if your child is only a few months old she will NEVER remember it!!

Angel

[docshoney]

Angel,
Thank you so much for your reply. I have to keep reminding myself that she will not remember it :). I don't worry about the outcome because we can deal with anything. I guess it is just a typical parent to worry. Your story is very inspirational and thank you again for sharing it with me.

[Dodger67]

Hi and Welcome!
Please fill in a few blanks: What is your name? What is your daughter's name? Where do you live? Where is her lesion? Does she have hydrocephalus/a shunt?

I'm Roger. 40yo, South African, SB menigowhatever (also can't spell it! LOL!) at L1/2, fulltime wheelchair user. Self employed IT nerd.

[docshoney]

Hi Roger nice to me you.
Sorry I forgot some pertinent info. :).
My name is Erin my daughters name is Jenna. Her myelocystocele is to the left of her spine right near her behind. I was told her presentation is very rare and only occurs in 1% of nueral tube defects. We didn't even know she had it until she was born, it was not detected on any of my numerous ultrasounds. From the pictures the doctors have drawn for me the very end of her spine did not form instead of the cone there is a fluid filled sac with some nerves around it. It is described in the doctors notes as a soft lumbosacral mass in assoc. with a sacral dimple with an asysmmetric gluteal fold. She does not have hydrocephalus.

The only information I have been able to find are medical journal abstracts. I think because it is so rare there is not alot written about it. I did ask the doctor if he felt confident doing her surgery since he told me they only get maybe 1 a year and he said he is. Our nuerodevelepment specialist is on the professional advisory council of spina bifida assoc. He is a great guy and gave us a lot of hope, he to agreed that there is not much information out there on her type. I am at the stage of trying to figure out how all of this is going to work and am glad I have found a place where people know what works because they are living it.