So, I couldn't wait until Thursday for our appointment with the neurologist to hear the results of Melanie's MRI. But I had a good reason for being impatient. Today is her 8 year physical with her pediatrician and due to many symptoms she has been having lately, I thought it was important to know whether there was a tethered cord causing these symptoms before talking to her doctor about them.
The neurologist called me right back and didn't want to tell me the results right away. She had been holding onto them for our meeting on Thursday to go over with them in person with us. But when I explained the reasoning, she agreed that we should know that Melanie in fact DOES have a tethered cord.
Here is what a tethered cord is from the National Institute of Health (click there for the full description and treatment of tethered cord):
Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence.
When we go for our neurologist appointment on Thursday we will discuss the diagnosis as well as get a referral to a neurosurgeon. This is a surgical issue that will require intervention before the symptoms worsen.
The tethered cord is linked to the Chiari diagnosis. When the spinal cord is attached to the vertebrae, it stretches and pulls and ends up pulling the cerebellum out of the skull resulting in a herniation.
I am in the process of composing my list of questions for the doctor. I would like a few more tests done, especially a MRI of the thoracic and cervical spine to see if there is a syrinx (another complication of Chiari and tethered cord that may require surgery).
There is a video that explains the tethered cord with pictures here. Click on the Chiari Malformation video to see the info about tethered cord. You can watch the other videos as well. They are all highly informative.
The Chiari Institute
The Chiari Institute is a place in New York that specializes in surgery of this type of thing. It is a consideration of ours to go there to see the experts in the field, but it is out of network for our insurance and there would be a ton of red tape to go through to get there (and many times insurance won't cover all the expense).
This diagnosis explains a lot of Melanie's symptoms since she was a baby. When she was only 3 months old we went for an MRI of her head due to unequal pupil size, then soon after she developed an unusual birthmark over the back of her right hip, then she had a lot of posturing and arching of her back (standing on her tiptoes), sending us back to the neurologist at abotut 5 or 6 months of age. If they had done the MRI of the spine then, she would have been treated much sooner and would possibly have never have developed the symptoms she has today. I had a lot of concerns when she had trouble learning to walk and with her gross motor development and I felt like I was always treated like the psycho, worried parent and sometimes was afraid to speak up. The doctors just kept telling me everything was fine, but they would investigate if it would make me feel better. Just a lesson - trust your maternal instincts! Just imagine if I hadn't pushed for this (and we were met with skepticism every step of the way). See my post of Patience with Shades of Grey from Tuesday, January 8 to refresh my frustration. I could write that same thing again right now!
Anyway, I'm sure the frustrations are not over. Now I'm the skeptical one! When we go to the new neurosurgeon there is still the chance he doesn't see the same thing on the MRI that the neurologist saw and dismisses us once again. If that's the case I think we will end up at the Chiari Institute.
We did talk to Melanie about this and she is scared and worried about the possibility of surgery. Poor thing, she is horribly terrified of pain and this would be a very painful procedure (72 hours lying flat in pediatric ICU one website said with several weeks recovery). We aren't going to talk to her too much about that until we know for sure what will be done, but we at least wanted her to start preparing herself for the possibility. Just keep us in your prayers for this journey!