Melanie's neurologist appointment on Thursday was just another chapter of frustration for us. The doctor had said on Monday that the spinal cord is lower than it should be indicating a tethered cord and would need surgery to correct. On Thursday she had changed her tune considerably. Yes, the spinal cord is lower than it should be, but it was hard to tell for sure if there was a tethered cord - "it's a grey area"- and there probably wouldn't be anything a neurosurgeon could do for us.
Talk about an emotional rollercoaster.
Regardless, she still wants Melanie to visit a urologist for bladder testing, have another MRI of her thoracic spine, follow up with the neurosurgeon and then again with her in four months. More appointments and tests for probably the same end result - yes there are abnormalities, no there isn't anything to do for it.
We didn't set out on this journey to have the issues fixed. We set out to find answers and to see if this is a progressive issue that HAS to be fixed. If it's not progressive, then we would just rather leave everything alone. We keep getting inconsistent reports. One minute we think she has Chiari that may need to be surgically corrected, then we find out it can't be, then we find out she has tethered cord and will need surgery and then that surgery probably won't help.
And we're not finished yet.
Many people (doctors included) think this is stressing me out and I need to decompress so as to not exacerbate my symptoms more. I have been dealing with some of my symptoms for most of my life. My swallowing has been getting progressively worse for a couple of years and we are to the point again where I need to have the esophagus stretched again, but was hoping for some answers to the reason for it first (and we know that swallowing issues are linked to Chiari). My headaches do not correlate to stressful days, but to days when the weather might be bad or when I have to sit in one position for a long time (in the car) and have been an issue for almost 7 years. . .I looked for answers for the headaches/earache 7 years ago, but gave up after no one had answers for me. Now that I know there is a cerebellar herniation and others share the same symptoms, it makes the symptoms come to light again, but in no way are they worse now than they have been for the past 7 years.
And Melanie is the least stressed of all of us - she doesn't have nightmares or anxieties about this. She continues to happily play and have anxieties about normal childhood issues (losing her favorite bracelet this week was the most stressful thing that happend to her). But yet she continues to have medical issues and symptoms that have been around for several years and we would like to have answers for.
So, yes we are a bit stressed, but not overly so. We are dealing with it appropriately. I know when I need some time off from thinking about it and I snuggle with the girls to watch a movie or play games or read a book. I sometimes write to help cope with stress and Tom goes for a run. But really, I think we're doing fine. I was at my boiling point after the doctor's visit, but that was purely from frustration and has passed now.