One of the first steps we took was to tell our friends and family.
Having a support team through all of this is essential. If you have as much on your mind as Matt did, it will be difficult to take everything in and remember everything that is said during appointments. Plan to have a lot of support during your surgery and recovery too.
Ideally, you should have someone who is positive and responsible who can attend all of your doctors appointments with you and be present during your phone consults. This person should be able to take notes for you and help you organize your questions. Matt had his fiancee at every appointment along with his brother and when possible, his best friend and parents. Matt said having support was everything. At some appointments, it was best with just one or two people with him - he wanted me to remind you that the patient rooms aren’t always very big!
Friends also helped Matt with advice, referrals, and gathering information. Everyone knew someone who knew someone who knew a surgeon or expert. We gladly took this information and added the surgeons we felt might be able to help Matt to our list of surgeons/centers we would send MRI’s to in order to set up phone consults. As one friend recommended, look for the surgeon or center’s name that comes up the most in referrals. In our case, this actually proved to be the surgeon we chose.
Beyond friends and family, Matt reached out to his primary care physician and friends that are physicians to make sure he was taking the right steps and making the right decisions. Having professional reassurance is always good!