We saw the neurosurgeon today for our second opinion. I left the office feeling so encouraged. I felt like we were actually listened to this time and they agreed, something is wrong. We first met with the doctor's PA and he basically told us that if they weren't able to help us, they would find somebody who could. I could've cried right then. FINALLY. Somebody is going to help us get the answers we've become so desperate for.
We discussed my pregnancy and Cooper's birth. What symptoms we started noticing first and at what age. We talked about Maisey and her development as well as my pregnancy with her. I felt like I was actually being heard. And they cared. He told us that with the symptoms we were describing, the two things that came to mind were tethered spinal cord and muscular dystrophy. Both possibilities I had already considered and researched. So this information didn't surprise me. He then looked at the images of Coop's spine and showed us the spot that he assumed was the cyst. He said he believed it was possible that it was causing issues but he couldn't say for sure. We went over a few more things on the images before he left and told us the doctor would be in in just a few minutes.
We waited less than 10 minutes before the doctor came in and immediately started assessing Cooper. He asked questions and looked him over from head to toe. He asked us if he ever has dry diapers and how long it had been since he was changed last. The kid is usually never dry and, in my opinion, pees excessively. I told him this and without missing a beat he told us he was referring us to a pediatric urologist. He continued looking Coop over and pointing out things that he didn't consider normal for a child his age. Less than 10 minutes after walking into the room he had referred us to two different specialists. A pediatric urologist as well as a neuromuscular specialist.
At this point he still hadn't looked at the MRI images. He breezed through pictures of the brain and agreed that everything looked normal there. Then he began to focus his attention on the images of his spine. That little spot the PA had assumed was the cyst? That was NOT the cyst the doctor noticed. He suggested that basically the entire bottom area of the spinal canal, below where the spinal cord ends, was an arachnoid cyst. A cyst that he said he believes very well could be causing all of our issues! The cyst his neurologist's office brushed off as completely normal! I was equal parts relieved and furious. Had we not been proactive at getting this second opinion, how long would we have waited for answers? How long would we have ignored that cyst? He said if that was the root of our problems, it would be a fairly simple fix. As simple as spine surgery can be, I guess.
Although he believed the cyst could be the culprit, he wasn't going to assume anything and told us he wants another MRI done. This time he wants images of the rest of Cooper's spine (something he couldn't believe the neurologist hadn't ordered for the first scan) as well as his lumbar spine again but with contrast this time. I'm pretty sure he was supposed to have all scans done with and without contrast the first time but that's a whole other story.
So like I said, we left that appointment feeling so encouraged. And thankful. Thankful that someone actually listened to us. Thankful that steps were taken to find the cause of Cooper's symptoms. Thankful that an answer might actually be within reach.
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