Mothers know best

A few weeks ago on Thursday, December 1st, Morgan and I followed by Donna in the car behind us drove to Phoenix (Mesa to be exact) for a doctor's appointment. We were going up to see a neurosurgeon at the urging of our urologist to have Morgan looked at yet again for a possible tethered cord. This is something that I have been questioning since Morgan was about 14 months old and it was only at my request that her first MRI was done to check for the possibility of a tethered cord. At that time it was ruled inconclusive and we were told to get another MRI done later. About nine months later we did get a repeat MRI and again it was inconclusive, however, the doctors that did look at it said it did not appear to be tethered, but that the cord just ended low.

We stupidly took their word for it (even though my mothers instinct told me it was tethered) and continued with everything else we were doing, PT, OT, speech, etc.... Then in August after almost 2 full years of potty training we had gone to see a urologist. One of the first things he mentioned was the possibility of a tethered cord. Often when a child's cord is tethered they experience difficulty controlling their bladder and problems with constipation. He immediately suggested that we get a second opinion on the MRI and that we actually be seen by a neurosurgeon and not just a neurologist, so we began the long process of getting in with this doctor.

After months of waiting I finally took it upon myself to track this doctor down and get in rather than waiting for all the stupid referral stuff to go through and them to finally call us. So.. on the 1st we drove up. Donna, Morgan and I were all very impressed with the doctor. He spent almost a full hour with us discussing all the different things he saw in Morgan, looking at her scans, and discussing treatment options. After pulling up her MRI and finding the right image he took one look and said, "yep...it appears tethered." I almost burst into tears right then and there, but did everything I could to control myself (I saved my melt down for poor David who had to hear it all over the phone from a hysterical wife). I was so angry at every doctor we have seen in Tucson, every one of them who ignored or brushed off my concerns, every one of them who didn't before refer us to a neurosurgeon, everyone of them who just took Morgan's lack of movement as part of her AMC instead of investigating further. I am DONE with Tucson doctor's. From now on it will be Philly or Phoenix.

For now the game plan is to do another MRI (this time completely without sedation and without any fighting with the nurses at stupid T.m..C). We are waiting for prior auth in order to schedule the MRI which will be done in PHX. After the MRI we will immediately have an appointment with the doctor so we don't have to drive-up there twice. From there we will discuss our options, but will most likely be discussing surgery to un-tether the cord. From what we were told in about 50-60% of cases by untethering the cord you do see improvement in movement. In the other 40% the movement doesn't change much but you usually at least see bladder and bowel control improve.