There are many behind-the-scenes people that you don’t see that have been huge in this quest for this surgery. I don’t personally know them. We’ve never met and may never see one another face-to-face, but they are the reason we are headed the direction we are next month. And I am so very grateful for their input.
No doctor ever mentioned it could be anything other than migraines. Not once did any of them ever consider occipital anything or surgical options. Every thing I’ve learned, I found on closed Facebook groups of other families walking these same, horrible halls of despair, hopelessness and pain. There are some groups that I long ago dumped because of the drama and self diagnosis. One in particular overwhelmed me with a young suicide. But I’ve found a group that “fit” and I’ve learned and shared. I may not know them, but they know me. And my darkest secrets. My fears. My worries. My faith. My child. A safe place where I can ask the simplest of questions and get a phone call or novel of explanation. When I feel overwhelmed and “done”, they lift me up. And I’ve been privileged to reciprocate for them as well. We call it a sorority of sorts, but one that no one would ever sign up for. When a new member joins and we share our story, we welcome them always saying something like it stinks to be here but it’s a great place to vent, research, reach out and connect with others who truly understand what this does to your family.
The first time I heard the terms decompression surgery and occipital neuralgia was from one of these mothers. Her daughter has had great success and written a blog that I refer to quite often. Others have shared therapies I’ve considered, but learning from them I’ve either pursued or crossed them off the list on my own. A huge bonus is side effects of medication. Doctors are quick to write scripts with very little concern for what goes on inside the body with each and every drug. Especially to growing girls with their hormones and body changes, or lack of same. But other moms have shed light on symptoms and mood issues that have been key to their overall health stability.
One parent has paid it forward with hotel points securing a room for our stay. Another offered airline rewards should we have chosen to fly up instead. But all have always taken the time to introduce themselves to the newbies, stop what they are doing to address a question, and cheerlead another on when they are down…all while managing the care of their own very sick child as well as juggling other children, spouses and their jobs. Very willing to assist and meet where it’s needed. I’ve done the same, many times.
Some had the surgery long ago, so it’s great to hear success stories years later. Some are still recovering and continuing to heal and get their lives back. Some have not been lucky at all but still maintain they had to try. Some are headed towards their date like we are. All have given us insight at the varying stages of this journey. And one in particular has taken the time to write out a “packing list” for our trip. PackingListDrBranchSurgery
These are the people you don’t see. Where I draw my strength. Find answers. Ask questions. Cry out and vent. Share my heart. Bear my soul. So when you pray for us, please broaden it to include these families.