LaRae saw Dr. Campbell at Albert I duPont Hospital at the end of March. He is her neuro surgeon. It was LaRae’s second opinion appointment for the Syrinx. I was very pleased at how well the doctor explained everything and he did not rush the appointment. There are a few reasons why she could have this problem; however, they are what they call a ‘gray area’. They cannot see it on the MRI. One reason could be a Tethered Cord; another could be a zero Chiari Malformation. He really doesn’t feel she has either one of these problems. Which comes back to our original thoughts and he kind of confirmed that, but in better medical terms, which I am not going to be able to fully explain right. I will do my best, but please do not hold against me if it is confusing.
At the time that the anterior horn cell was developing, when I was pregnant with LaRae, (they refer to it as a ‘short circuit’ happened) the brain short circuited and funky things happened and went wrong. She was born with Arthrogryposis with Amyoplasis now to find out a Syrinx probably was one of those funky things that happened at the same time too. He said it was like a domino effect, probably more things are affected, and we just did not know about them. He did say that a Syrinx was not caused by the Arthrogryposis; he feels that the Syrinx happened during the same time of development. We at least got some answers this time that made sense.
This is what our treatment plan is for LaRae: On June 1st she goes for her second MRI and as long as the fluid hasn’t increased, she won’t need another MRI for 1 to 2 years. I am not sure what plan of action will be taken if the fluid is worse, so for now I am going to stay positive, pray a lot, and do what I am learning to do the best - leave it the Lord’s hands.
