The following was taken from a post we shared on the Facebook page we have for Paisley. This is from our visit with the specialist in August:
Today was exhausting. It’s been a very long and tiring 36 hours. Traveling, new hospital, new faces and the stress behind the reason we are here all on very little sleep. But, we did it and now we rest with Paisley until we fly back home Wednesday.
We do have some answers but it is so complicated and confusing. I worry Paisley will always remain a puzzle and maybe we will always be searching. I hate this life for her. We’ve lost 2 1/2 years to Chiari and now it is more complicated than ever. I hate it.
First of all, the specialist is wonderful. I cannot say that enough. His staff is amazing. Paisley has felt like a priority since the beginning. Their communication is wonderful. There were so many things Kevin and I observed today that were really amazing. We feel blessed Paisley is in great hands.
They drained Paisley’s CSF. She wasn’t as high as we all suspected she would be. Truthfully, I am shocked. Her number was slightly high so we are hoping to see symptoms subside since he lowered her significantly. One thing we noticed leaving the hospital was that she couldn’t stand or walk. We were warned if she was lowered too much she might not be able to sit up for awhile. Since being discharged she has gotten her mobility back.
Paisley had a MRI where they visualized her neck in different positions (flexion and extension). Paisley does have some instability, a slight retroflexed odontoid (if we understood correctly). Now the question is, how do we address this? If she didn’t have the 4th nerve palsy she should be trialing a cervical collar to help stabilize her neck. However, Paisley currently sees double when her head is straight which is why she compensates by tilting her head to the right. It would be cruel to force her head straight and force her to see double. Her instability does need to be addressed as we don’t ever want to go down the road of a fusion.
Now… the confusing, complicated and I want to cry part… Paisley’s stent in her 4th ventricle is too high. It appears to be tickling her 4th cranial nerve which could be the cause of her 4th nerve palsy. I never saw this coming nor even knew this was a possibility. The question is, what do we do? To pull the stent down or remove it is a big deal as he would need to go back into her Chiari site. Assumming it is interfering with her 4th cranial nerve and the cause of the palsy it would continue to affect her eyes which then causes a bunch of issues in itself. If we did nothing and proceeded with eye surgery and then the stent moves it could affect her eyes negatively to have corrected them if the root of the problem was due to the stent. It is very confusing and I hope I explained that well. I am still trying to process it myself.
For now, we keep a diary for a week. the specialist wants to know what symptoms subside and what remain. We want to see just how much her elevated pressures are affecting her. One day at a time and we hope the right decisions are made moving forward. Thank you everyone for your thoughts and prayers!