Update on my DD.

Sunday, March 23, 2008

I had mentioned before that there were some health problems with my DD. I didn't say specifically what they were because to be honest we didn't know. But we may know now. Here is the whole story:

At the beginning of this month, she started seeing a chiropractor for ongoing lower back pain. At the initial appt. he took x-rays. He sent them to a spinal place on the east coast to read them and they saw something suspicious on them. They suggested we have an MRI on her right away. The chiropractor arranged for an appointment that very day to have the MRI. The next week we got the report back from the radiologist. He suggested we see a neurosurgeon. He saw something that looked like a large cyst. She also has a space at the base of her spine that was not fully developed at birth (which we did not know about until now). He said this could possibly represent myelomeningocele (a form of spina bifida). The chiropractor tried to get her into the top neurosurgeon in our area, and after reading the report, he refused to see her because of the location of the cyst. He said he simply did not feel comfortable removing it himself, so he referred us to Cardinal Glennon in St. Louis. We went last week for our appt. at their spinal clinic. She saw a whole team of doctors there, including a neurosurgeon, a orthopedist, a urologist, and a rehab therapy person. Dr. Flannery, the neurosurgeon, believes she does have myelomeningocele and that the cyst is a collection of spinal fluid, which is attached to the portion of her spine that is not developed fully. The plan now is to do a test to check her urinary function, and then to consider when is best to have the cyst removed.

A couple of years ago she was diagnosed with mild scoliosis - which now I find out may be related to this as well. How odd that I have to wait until my DD is almost an adult to find all of this out. But Dr. Flannery says that sometimes people have this condition and never know about it unless something else happens, as is the case with us.

Its not been the best month for us, thats for sure! My DD is obviously very nervous about the prospect of having back surgery but at the same time, wants to have it removed. I wanted to update all my friends on this and this seemed to be the best place to do that. Any and all prayers would be much appreciated! Thanks.


kelliebean said...

Stephanie, I will keep you and your DD, your whole family in my prayers. It all sounds very overwhelming - especially reading about your job now - but I know God will carry you through it all. {hugs}

--Kellie (CKMB "Kelliebean")

MadMumbler Mommy said...


My son Joey (12) has myleo, he's around L2 approximately, uses a wheelchair.

It's not uncommon for spina bifida occulta (related condition) to go undetected until later in life.

I know this dx sounds very scary, but rest assured there is a lot of support and information out there about it.

There are several great email lists on Yahoogroups including one that I run: